"Psychology shows that when autism parents live in constant survival mode, their bodies and minds adapt to ongoing stress. They stay alert, hyper-aware and emotionally drained always bracing for meltdowns, judgement or the next unexpected challenge. Even in quiet moments, true rest feels impossible. It's not overreacting, it's the nervous system forgetting what peace feels like." Source: @theautismdad

I read this yesterday in a meme (whose photo will not seem to appear on the site today), just after I'd removed the broom from blocking the back door. Sudden Onset Insomnia has struck again here. We have door chimes, but I can't always hear them from my bedroom, so I use the broom as back up noise. 

Our autism mindset affects other relationships. All relationships. Like how I assist my 85 year old Mom via Ring cameras set up 140 miles away. My observations are mostly predicated on constant disaster, worry, thinking ahead. I make different suggestions than my brother (no children) and sister (1 son, married.)  My ex-husband has taken me to court assuming that when I say, "No" to something he wants, it's about an ex-wife just being contrarian, that it's a power play about him. Never. It's always built on worry for my daughters.

I took a computer program class in college. There, I learned about the concept that would come to rule my life: Boolean logic. "And, Or, Else." It's our constant autism companion, "If, Then." The worry machine.  From Grok: if-then statements are fundamentally tied to Boolean logic. The "if" condition evaluates to a Boolean value—true or false. If the condition is true, the "then" block executes; if false, it skips or executes an "else" block if present. The condition itself is typically a Boolean expression, like comparisons (`x > 5`) or logical operations (`is_active && has_permission`). So, at their core, if-then statements rely on Boolean evaluation to control program flow.

I got my only college C in that class.

By Cathy Jameson

I love the summer months.  I especially love alarm-clock free quiet mornings when the kids sleep in.  You’d think I might take advantage of that quiet time and do something constructive while I have the house to myself, but I don’t.  I will sometimes just sit with my coffee and look out the kitchen window.  Beyond the window is my backyard filled with trees and squirrels.  I haven’t turned into a birdwatcher yet like other people close to my age have, but birds are back there also and will sometimes catch my eye.  My favorite view on a sunny, quiet morning is when the sunlight is soft, and when a slight breeze makes the shadows dance across the yard and onto the kitchen table.  It’s here at my table that I think, reflect, and wonder what might come next.  

Next for me in the most present sense is hearing the kids finally stirring.  Ronan will sleep as late as his college-aged siblings.  He may not have the best communication still, but he loves them so much and shares that with them throughout the day.  He also seeks them out, and not just because he wants them to change a Wii game.  Normally, he’d come to me to ask for help.  But when the kids are home, he goes to them.  Ronan will sometimes treat them as if he is a taskmaster, though.  He acts like that when he signs all kinds of signs to get their attention, to get them to do what he wants them to do, and to call them right back to change what they’ve just done.  There’s some frustration in that – for both Ronan and the sibling as he makes some pretty rapid-fire directions for them to follow: 

Ronan: (signs to sibling) Change Wii help. 

Sibling: You want this one?  (sibling asks while sifting through the discs that still work)

Ronan:  Yes, yes! (he smiles when sibling finds the ones he thinks he wants)

Sibling:  Okay, here you go. (inserts disc and starts to walk away)

Ronan:  (immediately and emphatically signs) No, no, change!

Sibling:  But you just said Yes!  (sifts through discs again)

Ronan:  (picks the exact same disc and signs less emphatically…almost smugly) Yes.

Mom!!!  “I know,” I tell them.  “He does the same thing to me.”

Looking at my summer view in the near future has Ronan joining the college-age siblings for move-in day.  He’s done well the last few years in accompanying us to campus, and I think we’ve done a good job of exploring campus with him when we get to visit the kids after they’re settled.  The best part of those visits is seeing the kids’ friends take Ronan in.  I’ll never forget the first time I got to bring Ronan to see his little brother for dinner one evening.  Willem asked his friends – all of them – to meet us and to join us for that dinner.  He even went so far as to say, “Mom, can Ronan sit next to me?”  Ronan’s a messy eater.  He needs assistance.  He can be very demanding at the table wanting this sauce, not that one.  This bite, not that one.  Oh, and your drink, not mine.  I could tell by the way that Willem asked that he remembered all of that and didn’t care if Ronan was going to be a rotten pickle at the dinner table that had us surrounded by 12 other young adults; he wanted to sit by his big brother.  So, I put my worries aside and watched the brotherly love in action, which was a bit messy with putting too much ketchup on French fries but was also beautiful.  Even more beautiful was witnessing the others, my son’s new friends, trying to engage with Ronan.  

When summer ends, Willem will return to those friends, and I have no hesitation in sending him back to them for another successful year on campus.  Before that occurs, we’ll start working on how to tell Ronan who has grown accustomed to typical brother rough housing like wrestling and being lifted and carried around the house like a sack of potatoes.  The two go out every few afternoons for a drive.  They sometimes get fast food that their mother doesn’t buy but knows that this time together is so precious that she doesn’t balk too loudly.  They spend a lot of time together, and it’s been beautiful to see.  

One day, when Willem ran out to do a quick errand to a store that Ronan doesn’t usually like to go into, Ronan looked at me, got up and grabbed his shoes.  He told me with his actions that maybe he did want to go in the store that day.  

But little brother had already left.  

And it hit Ronan hard. 

Just like the last time Willem had gone out to do something without Ronan.  He was just so sad.  Letting me know just how much he wanted to be with his best guy friend, Ronan went to his brother’s room, took one of Willem’s blankets and put it on his own bed.  My heart sank for Ronan, but it also burst with gratitude knowing how connected the boys have become.  

Soon, but not too soon, before the house becomes a little less active and when the older sibs go back to school, we’ll work on a few things.  We’ll look at pictures of our previous visits on campus.  We’ll talk about the friends the kids have there.  We’ll plan a few weekend trips there and back, too, so that Ronan knows that when summer ends our fall routine will begin.  I don’t want to think about that too much just yet because I am absolutely loving the view I have. It’s a wonderful thing to see the kids making the sweetest bonds with their brother right now.  

Cathy Jameson is a Contributing Editor for Age of Autism.  

By Cathy Jameson

We were able to get away to the beach last weekend for a few days.  Always a place of refuge for my family, we are happiest there and feel refreshed upon our return home.  I should stay off my phone while we are on vacation, but I was finishing the last week of a 5-week course and needed to stay connected to receive messages from my professor.  In the midst of looking through my emails for some information I needed for a final paper, I saw an email from the post office.  Several packages were going to be delivered while we were gone, which, thankfully, a kind neighbor offered to retrieve for us.  I opened one more post office email, thinking it was for one more package, and saw that it was just for the regular mail that would be delivered.  

Most of the time, I see the junk mail being scanned and scroll quickly through.  This time, the return address of one envelope had me stop scrolling.  

UGH.  

It was an official looking piece of mail from a pretty official group with letters that are usually time stamped with a return reply immediately requested.  I made a mental note to pull that envelope out of the pile of mail when we were back home.  

Once home, I saw that the group had set up a phone call for me: Your appointment is on Tuesday between 9am and 3pm.  Please be available by phone during that time.  It had been about a year since they reached out, so I figured it was an appointment asking for a review of current needs and services.  When the call came in at 1:15, I was in the car with my daughter, who had just finished her PT appointment.  I let the caller know that I was driving, and that Ronan’s sister was also on the call with me since I had the speakerphone on. “Oh, then let’s reschedule for when you are not driving.  I can call you back anytime this week.  What day can I do that?”  We picked a day later in the week, and I stressed out a little bit until she called back. 

I know I shouldn’t stress, but anytime I have to prove that Ronan is completely dependent and requires 24/7 care, I worry.  We provide exactly what he needs.  We do more than the basics.  We work to keep him happy, healthy and safe.  We do the same for our other children, but our other children don’t have agency representatives calling, emailing, or mailing us to prove their health status.  No one monitors their abilities or their disabilities.  No one holds us accountable for their development or a lack of development.  Parenting them carries different responsibilities, ones we’ve managed on our own.  For Ronan and for his different needs, I understand that groups want to ensure that we are being honest.  They ask and expect us to promise to uphold whatever standards and regulations they demand, especially the ones that provide monetary support.  It’s a terrible thing that we can’t just give our word.  We are truthful, but others havechosen to abuse the system.  So, regularly, our integrity is put under a microscope and checked.  

We’ve followed the rules, we’ve filled out the forms, we’ve disclosed all that’s been requested, so I shouldn’t have the slightest worry.  But it’s still stressful.  

The highlight of the latest call, besides securing the care and services that Ronan does need on a daily basis, was when the caller asked if anything had changed in the last year.  Has he moved?  No. Has he gotten sick for more than 30 days?  No. Has he gotten married?  

What?!  No!  Ha!  

“That would be something, now wouldn’t it,” I chuckled.  

The rep said, “Well, if he had, there’s another program that he could qualify for,” and she told me a little about it.  

I wasn’t expecting that answer, so I thanked her for the information just in case that were to happen.  Giving the woman much more information than she probably needed, I ended with, “You know for Rone to be married would be the biggest miracle of all, which we do pray for.  For a very long time, we’ve hopedand prayed for full healing, for him to regain full function.  You know, for us…that would mean to be independent, on his own, and, I guess, one day married.  That would be the best, so thank you for that thought…” I trailed off. 

In all the years that I’ve had to respond to calls, email, letters, and intense inquiries about Ronan’s health and abilities, that call ended up being the best one.  The representative and I talked about several other items, ones that no one in her agency had either thought to tell me or bothered to tell me.  

With more knowledge, I feel confident that his next year of care is not just secured, but with an added a benefit, it could be a better year for him than previous ones.  Despite the stress, the detailed record keeping, and the frequent invasion of privacy, I’m more than okay with being able to provide that for my son.  Forever and always, I will hope and pray that our little family can give Ronan exactly, if not more, than what he needs to be happy, healthy and safe. 

Cathy Jameson is a Contributing Editor for Age of Autism. 

By Cathy Jameson

Last week I got an automated call where you say hello and have to wait for a human to be connected to you.  I hesitate to answer those kinds of calls.  But I knew this could be important.  The area code gave that away.  I answered and stayed on the line longer than expected.  Static, a slight beep sound, oh, dang it.  Is it a scam call?  I wondered.  I know not to answer those.  About to hang up, a robo voice popped on the line, “This is ____, your insurance company.  Please stay on the line if you are … Ronan … Jameson.” 

He can’t answer phone calls himself, so I stayed on the line.  “If this is … Ronan … Jameson … please press 1.” 

About to press 1 to see what it was all about, another call from my daughter’s provider came in.  Ugh.  She’s still recovering from an injury from earlier this year.  In her second week of therapy now, I needed to touch base with the provider who I know would actually be on the line.  So, I hung up with the insurance company.  It’s all over Ronan’s files that he has intellectual delays and is non-verbal though.  If they really needed to talk to him, or me, a live person would’ve initiated the call.  If it’s really, really important, I know they’d have called right back. 

They didn’t.  Strike 1.

That same day, I followed up with a medication order that I placed over a week ago that was still not delivered.  It should’ve been at our front door over the weekend but wasn’t.  The minor delay had Ronan 2 days off one of his seizure meds.  It wasn’t the one that I think will save his life, but it’s still one that is part of his daily med routine.  Talking to the pharmacy tech, I said that I used the automated line this time to order the medication.  She asked, “Did you remember that it takes 7 – 10 days for the order?”  I did, I told her.  “But still,” I questioned, “We should have had some movement on the delivery.  It’s not slated to go out until Wednesday.  If it’s filled, why hasn’t it gone out?”

She quickly said, “Let me see if the pharmacist can squeeze the order in to be delivered tomorrow.” 

Grrr.  If it’s easy to “squeeze” in only because of a call I made, why not just push the order out when it was initially received?    

“Mrs. Jameson?” the tech came back on the line. “The pharmacist can send it overnight, so you’ll have it tomorrow.”  I thanked her and before hanging up asked if it would be wiser to just call the order in like I had been doing.  It never took as long when I called, so maybe the automated process was less reliable I thought.  “You could call.  There’s still the part that the pharmacist wants you to remember – orders take 7 – 10 days to process,” she added matter-of-factly. 

She got the last word, not that I’m keeping track.  But Strike 2 for how things seemed to be going.

Later, I got something in the mail that I wasn’t expecting.  One of the agencies that provides a service sent a Second Request form.  Second request?  I wonder why when I filled out and mailed back the original time-sensitive form in March.  Opening the envelope, I saw a letter stating that if the form wasn’t returned timely some of Ronan’s services could be in jeopardy.  Dang it!  I mailed it!  I have proof, too. 

We rely on this group for several services, so I quickly gathered the documents being re-requested, addressed the envelope, and went out to mail it.  Missing the morning delivery/pick up, I felt apprehensive at trusting the postal service (again) to get this now very time-sensitive information to the right people.  Trying to get to the post office before it closed on Wednesday, because Thursday’s national holiday would delay the pick up/delivery, I missed the drop off window.  The earliest it would go out would be Friday morning.  Having to leave it in the maildrop hoping it wouldn’t get lost or forgotten, I walked away feeling defeated.

UGH.  Strike 3. 

I wait, pray, and hope that that envelope gets to the office it needs to get to. 

One praise report did come in in the midst of the hoop jumping I did last week, and that was Ronan’s meds finally arrived.  If you’re at the mercy of others to do their job, it takes faith to believe that they will follow through.  It’s not a celebration when they do their job but a huge relief that it got done.  When your child depends on people doing so much more – like securing and maintaining appropriate services, the stress of ensuring all of that remains accessible is even greater.  No wonder it’s said that parents of a child with special needs have stress levels comparable to combat veterans. They are not lying. 

Cathy Jameson is a Contributing Editor for Age of Autism. 

Happy Father's Day!

By Cathy Jameson

I got a call from a group that helps with some of Ronan's services that I knew would take awhile, but I couldn't stay on the phone when the lady called.  Setting up an appointment for the next day, the call was not quick like the lady said it would be.  Like how long it took for Ronan's vaccine injury to set it, slow and painful, so was our conversation.  I've had plenty of these kinds before.  But the longer Ronan cannot, will not, and would not do many of the tasks that I had to go over, the more depressing things get.  The lady quickly picked up on that, like other reps have, and that's when the apologies began. 

At minute 20

I'm sorry, it's taking so long...

After 47 minutes

Here's one more I'm sorry I have to ask...

At a little over an hour

We're almost done, thanks for your patience...

If only the chronic conditions could end like this phone call finally did.  But because of those conditions, long phone calls and securing existing services are still part of life.  What's next brings a new set of emotions, including apprehension.  

Before we hung up, the lady shared a promise of reviewing his file.  “His file goes to those consulting on the case.  After that will be a determination of what will be done next, which includes considering the services he currently uses.”  For his health and safety, we depend on specialists, services, and interventions that we receive.  We are grateful for the coverage, the assistance, and the peace of mind that comes with being part of organizations whose mission it is to reach out and deliver services to people like Ronan.  

Always mindful of how detailed intake and renewal paperwork must be for continuity of care, I'm respectful and thorough with my answers, even if they conjure up everything my son can't, won't, and may never be able to do.  In order to give a solid answer for some of the questions, I know to share more.  Some responses could be a quick yes or no reply, but others required more information. 

Is he able to tell you what he needs? 

Well, yes. But no.  He signs.  But it's not American Sign Language (ASL); it's Ronan Sign Language (RSL). 

Does he make his own meals?

He tries.  But he needs total assistance.  

Can he toilet on his own?

We've set up a bathroom schedule.  But he doesn't always make it. 

Is Ronan able to make his own bed?

He tries, and it's the cutest thing to watch.  But no, he can't… 

Other questions were ones that had me answering if what he can do today is the same, better, or worse than last year.  I knew how I answered could either secure a current service we have, or an answer could have that change—possibly eliminating what he receives.  Talking about some topics was tough, especially having to describe the medical issues Ronan faced last year that landed him in the hospital.  During that time, his abilities worsened and caused an inordinate amount of worry.  He faced unknown issues that caused new problems, problems that welater learned could've been avoided.  

Like how he got sick in the first place all those years ago, a lot of this could've been avoided. 

It can be overwhelming when one agency or another asks for an update.  But I know that the sooner I answer their questions, the sooner those updates can be processed.  Rone's vaccine injury has been never ending, so the services we rely on to keep him safe and healthy also needs to be.  Ronan needs constant care, so I get back to work getting done what need to be done.  The sooner I go through the emotions, the sooner I refocus.  It’s work, and it’s hard, but it’s the most worthwhile work I can and will continue to do for my child. 

Cathy Jameson is a Contributing Editor for Age of Autism. 

By Cathy Jameson

Cathy has the day off for a family event.  Here's her 2025 intro to a Best of post. Dive in!: Our neighborhood pools opened for the summer last weekend. Ronan doesn’t so much like to go swimming anymore, but this story reminded me of a time when he did. 

--

With as much traffic our floors and carpets get, I've often wondered if it would be wise to purchase a steam cleaner. During Ronan's de-robing phase a few weeks ago, I came to a conclusion that YES, we do need our own steam cleaner.

During that phase, I scrubbed Ronan's bedroom carpet daily.  The cleaner I got his carpet, the dingier other carpeting in the house started to look.  While trying to recall the last time we had them professionally cleaned, I remembered a conversation that the carpet cleaner guy and I had.  

We were talking about our kids, the summer ahead, and fun family things to do in town.  Halfway through the conversation, Ronan walked into the room where we were talking.  Boy was he was a sight!  Ronan had tried to put on a bathing suit over his shorts, two pair of swim goggles, and swim floaties--both of them on one arm.  

The carpet cleaner guy stopped mid-sentence.  Ronan, taking no notice of him, stood in front of him and then stared at me.  Signing 'swim, water, boat', his way of saying that he wants to go to the pool, Ronan reached for my hand.  I offered it to him but didn't leap into action.  Tugging on my hand, Ronan looked puzzled.  It would be at least another hour before the carpet cleaning crew was done.  That, and because it was raining, had us staying home with no plans to go to the pool that day at all.  

But Ronan didn't care.  

He wanted to go swimming.  

Now!  

What followed wasn't pretty.

By Cathy Jameson

I’m learning a lot from my recent master’s courses.  The best part is when I can double dip and share something I’ve learned there over here.  The course I’m taking now is about ethical dilemmas in special education.  Did you know that ethical principles are in place, and have been for quite some time, that promote and respect the needs of students with special needs?  Principles guide educators to seek and maintain high levels of expectation for the student and for themselves as well.  For all the years that my son was in special education, I had no idea!  I knew that ethically, teachers should do the right thing because it’s the right thing to do and that they had to be highly qualified to work in the field.  I also knew that the Individualized Education Program (IEP) they helped draft had to ensure that he received a free appropriate public education (FAPE) in the Least Restrictive Environment LRE).  I knew that the general education teacher must be involved and contribute to Ronan’s program also.  Related services, like speech therapy, were something the entire team had to consider, too.  But the ethical principles, standards, and policies that special educators refer to for guidance while teaching children like my son were completely foreign to me.  I felt a little dumb when, in my first assignment for my latest class, I had to describe an ethical dilemma I experienced in the classroom and which principle or principles I felt most connected to.  

Ummm, I didn’t even know about these principles, so….

But in finding them and then taking a look at them, as a parent of a child who did go through the special education system, I was strongly pulled to the ones that have educators advocating for their students and their families.  

That hasn’t always happened for us.  Protections are in place – on paper.  But not always carried through on site.  I won’t go into the details now, but when your child is not receiving FAPE and when they get hurt in the classroom, things have to change and you quickly have to learn about the other side of special education – the law.  The law should always be on the side of the student and their parents, but for some, that isn’t the case.  

Our elementary dream team ensured that it was on his side the entire time Ronan was with them, but earlier and later teams did very poorly in that department.  During those years, I poured myself into learning how to help my son retain the help he needed, but it was exhausting.  The amount of time I spent to know all that a parent must know went beyond just reading a little bit every day.  That reading went well into the night – every book, every website, every email from every parent who also faced inadequate special educational practices from their teams, it was a lot.  It was too much in fact. 

Had I known prior to enrolling Ronan in some of the schooling he did go to, I may have opted out.  The negative impact those years had affected him, my other children, and our family as a whole.  If adults don’t know how to protect all students at all times, if they don’t know that parents must be partners at all times, if they don’t put their best foot forward every day for the students, they shouldn’t be anywhere near the field of education.  

I can say that now, but back then, in the mid2000s, we needed and expected help from the professionals who said they could help.  At no time did we think they wouldn't until we discovered his education and care was lacking.  He, of course, couldn’t tell us that himself because of his severe expressive speech delays, but his behavior said otherwise. 

I know now that the more a non-verbal child refuses to go into a room with adults, you absolutely must trust the child.    

Now that I’m back in an educator role and working with children and their families, I can’t help but draw on my past personal experiences in the hopes of being a better advocate than some of Ronan’s educators were.  I advocate for the whole child.  I work to build a positive relationship with their parents.  I aim to provide meaningful interactions for the child, their parents, and the professional educators around them.  I remain hopeful that my purpose for being part of the programs I am part of blesses all of us.  With time and commitment, juggling the child’s needs, the staffs’ professional development, and the programs’ requirements can be done and done well.  I have so much more to learn and give, so I’m happy to continue to do that – to serve and to grow both at work and while I study late into the night for this class and others I'll take as I complete this degree. 

Cathy Jameson is a Contributing Editor for Age of Autism.  

By Cathy Jameson 

It’s Friday night of a long weekend, and I'll be working late into the night on a paper for a special education college class I'm taking.  Every extra minute I have lately goes into brainstorming, writing and reading for weekly assignments.  I’m thankful to have some extra time on Monday to stay ahead of my studies.  

Each course in the master's program I'm in seems to follow the same assignment outline - reply to a discussion question, write a paper analyzing a weekly topic in special education, read a handful of scholarly articles, listen to a lecture, take a quiz, and prepare for a final at the end of the course.  It's predictable work, thankfully, so I have been able to (mostly) manage the rest of my life (and my families' lives) around my desire to complete this degree.  My family misses me some nights when I’m reading and writing, but they know that this program is important to me. 

I've pushed myself to stay on target with school deadlines, but the extra reading I end up doing takes up so much more of my time.  The longer I read, the more rabbit holes I find.  Like when I used to research vaccines every evening, one rabbit hole I fall into leads to another.  Some nights, as I shut everything down, I’ve read until my eyes burn, but I haven’t written a blessed thing.  I know that I won’t finish a whole paper in one sitting with how much research and citing I’m required to do.  So, I end up writing one paragraph at a time, hoping to piece them altogether before the 11:59pm deadline each weekend. 

Some weekends, especially the busy ones, have that deadline looming quicker than on other weekends.  

I'm not one to give up, so each time I start to feel like I’m falling behind, I rethink how to time the next paper a little bit better.  I'm four classes in with a solid A, which has me thankful that something I'm doing is working in my favor right now.  

This 5-week session is all about ethics in special education, something I've never formally researched.  I knew I'd be spending tons more time reading the last few days just to get a feel for the current writing assignment.  The topic?  I've been tasked to pick two people who I feel have contributed in the most valuable ways to the field of special education.  The first few classes in the program pertained to which disabilities fall under special education and which laws protect students with disabilities, not the founders in the field.  That meant I didn’t have a top two list of who's who in the field.  And that meant I’d have to read quite a bit to feel confident about the two people I would pick.

After hours of reading, I decided on Edward Seguin and Dr. Maria Montessori. 

Having never heard of Edward Seguin (Édouard Séguin), it was truly inspiring to read his contributions to the field.  Dr. Montessori, on the other hand, was someone I was familiar with.  I wasn’t aware of her entire background, though, or that she was inspired by Seguin's work, so I carved out even more time to read through a book about her life, her discoveries, and her dedication to the care and instruction of intellectually disabled children.  

My paper is mostly written, but I need to go back and add citations from the research I was able to do.  While I do that, I wondered who you might feel were two people who have contributed in the most valuable ways to the field of special education.  If I could add two actual people we encountered during my son’s special education experience, I could name them quite quickly, Kate and Kelly who put a plan in place that saw Ronan thrive.  I'd immediately add a third person, Dr. E. from all those years ago. 

 While she didn't know Ronan, the knowledge she imparted to me in that one summer class has stayed with me for three decades.  Others certainly blessed us in other ways and in other areas of development (like Erika, Robin, Katie, and Erin to name a few) and are forever respected by me and my family. 

For many parents like me, we didn’t know that our children would need as much care and attention as they do.  I know for certain that I never expected my typically developing child to end up needing specialized medical care, specialized education, and specialized therapies and medications like he did and still does.  It’s a path that was unknown to me then, and one that, some days, feels strange to still be on.  Even so, I’m thankful to those who set the stage for special education when they did, like Seguin (and way, way back in the mid-1800s!) and my professor of that one class that I took way back in the early 1990s.   

To the trailblazers who recognized that some children need more time and more attention, thank you.  The compassion shared and the support offered will never be forgotten. 

Cathy Jameson is a Contributing Editor for Age of Autism. 

By Cathy Jameson

It’s ridiculous how long it takes and how many hoops we have to jump through for our children to receive the care they need.  Nine months.  That’s how long it took to get a procedure done in the specialty clinic.  What you or I, without complications, could have scheduled, had performed and recovered from within a few weeks, took nearly forever.  Originally scheduled for December, it didn’t help that last summer someone in the specialty clinic put Ronan on the wrong doctor’s schedule.  Their ineptitude caused further delays that already exist for patients with special needs.  Unable to get him on the top of the correct doctor’s schedule, we waited through another rescheduling. 

Booked way back in August, the original December appointment got moved to January, then got moved again, then landed on a date in May.  Asked to please have Ronan put on their cancellation list, we were offered a spot in April.  “Mrs. Jameson, we have an appointment that just opened.  Would you like it?” 

Oh, yes!  Let’s do it! 

Then the scheduler told me the date.  “It’s on the 9^th.”  I went from elated to absolutely crushed all over again.  “We can’t.”  That was the day after Ronan’s sister’s second surgery for an injury that had her back home from college.  While Ronan’s needs were great, his sister’s immediate need was greater. 

Having to pick which child needed care over the other was agonizing. 

So was pushing away others who wanted to help us.  Another specialist said he could piggyback on Ronan’s procedure, which we welcomed, but his office couldn’t manage the changes and delays.  Even though no fault of their own, that doctor’s staff apologized, “It shouldn’t be this hard for you.” 

But it is. 

Two weeks before the long-awaited appointment, the scheduler called once again, “Mrs. Jameson, I have another opening – it’s next week.  Do you want to move Ronan’s appointment up?”  It was late Friday afternoon, and a confirmation was needed immediately.  She knew I needed to work some things out, so she said, “Call me back, I can hold this spot for you while you figure things out.”  She gave me ten minutes.  Ten minutes to decide how to arrange, rearrange, and hope to God that everything that needed to be done could get worked out.  That didn’t just mean work things out for Ronan but for our other children, and for me and my husband who now needed to request a different day off from work.  The timing wouldn’t be the greatest as we would have to rush to get a pre-op health physical done, too, and faxed to the clinic by Monday, but I confidently said yes.  Calling the office back, I said, “Let’s book it.  We’ll see you next week.”  Hanging up, I raced to get things ready. 

If it’s meant to be, I said to myself, every door would open.

Thankfully, every door opened.  Preparing to be gone all day, and possibly overnight if any complications popped up, my nerves were a bit high as I packed for the hospital.  It wouldn’t be much I’d need to bring, but I still made sure to give myself time to have everything ready – a change of clothes, a few extra diapers and pull ups, Ronan’s meds, some snacks for me and my husband, and our guardianship paperwork.  We usually carry those in Ronan’s bag, but I made sure to put that envelope in my backpack.  Sure enough, that paperwork was needed.  The hospital hadn’t had those on file, but one of Ronan’s amazing nurses made sure to document that we could – and always will – speak on Ronan’s behalf.

From start to finish, the staff who walked into and out of the exam room, the operating room, and the recovery room were phenomenal.  I won’t say it was worth the wait.  That would make it sound like I accept the unnecessary and long delays.  I don’t.  Ronan should’ve had that December appointment.  Someone within the system should’ve fought for him to be moved up to the top of the correct doctor’s list, not add him to the bottom of the correct list and hope he moved up.  

While the procedure itself was not too complicated, Ronan’s health was compromised having to wait so long to correct a few issues.  Forced to make decisions we were not expecting to make while Ronan was under, I appreciated it when the doctor updated us during the procedure, especially when we had to make decisions about those issues before proceeding.  Giving us good information to help us know all options the team could do, the doctor added, “You know Ronan better than anyone else.  We’ll do what you think is best for him.” 

What’s best for Ronan – to keep him safe, happy and well cared for.  Always.

If Ronan was seen sooner, I know that some of the work that had to be done during the procedure could’ve been avoided – because it would not have gotten to the point of needing as much medical attention.  Ronan’s doctor recognized that and later told us he did not want that to continue for Ronan or for other patients like Ronan. 

I welcomed his frustration.

Had we had that original appointment when we booked the procedure last year, that conversation may never have happened.  Waiting almost ten months for Ronan to get the care he needed helped the doctor understand our frustration.  Already fueled with a desire to make some necessary changes, he had made it known to hospital admin that things have to change.  Not just for the patients and their families, but for the facilities who are not serving patients well.  The wait time, the additional difficulties that begin while waiting for appropriate medical care, the faith lost – in everything, must weigh on him because he has a plan to fix that. 

And I fully support it and him. 

“If you ever need parent input, call us.  We’ve been dealing with this sort of stuff for years now.  And the one who suffers the most is Ronan,” I shared. 

Before we leave, we usually joke with staff who we’ve loved getting to know while they’ve been assigned to work with Ronan, “We hope we never have to see you again.”  This time, I do hope we do get to see this doctor again.  I hope he does reach out to us because yes, we do know Ronan better than anyone else.  And he respects that and wants to do better for him.  I’ll never be thankful for the massive delays these last few months, but I am thankful for the time this doctor could finally give to my son.  We need more advocates like him.  

Cathy Jameson is a Contributing Editor for Age of Autism. 

By Cathy Jameson

I saw a video on Friday night that went viral not too long ago.  It was of a driver who slowed down then completely stopped on a major freeway.  Two lanes away from an exit ramp, the driver sat in the lane he had been traveling for what seemed like a good, long minute.  During that time, other drivers were forced to stop and wait for him to move.  Easily, he could have and should have continued on, but he made a disastrous decision.  

Instead of continuing ahead and rerouting, the driver inched his way to the right toward the exit-only lane he initially missed.  In doing that, a pretty significant multi-car accident occurred.  Where his vehicle sustained a bump, others were left crumpled in a heap surely causing delays for other drivers approaching that area.  I didn’t follow up with the story to know if the driver who stopped on that busy road was charged with any moving violations.  What I did do later was think about how simple and logical it would’ve been for that driver to just keep going straight.  

To let the GPS reroute him.

To take the next exit.

And to work his way backwards toward his destination.  

But he made a choice that will take time for others to heal from.

I’ve wanted to blaze ahead and just get done what I wanted to get done.  But something held me back. 

I’ve wanted to ignore the rules and skip through a line faster, too. But something told me not to. 

I’ve wanted to back out of a situation quickly.  But something later told me had I done that I’d have missed learning a lesson from it.  

In our little community here, we’ve learned lessons we never thought we’d have to.  And we’ve done that with each otherbecause of each other’s experiences.  Our experiences are painful, especially when we dwell on what happened to our child and their health.  And I promise you I wish what happened never did!  But had they not, would we be who we are today?

By  Cathy Jameson

Two weekends in a row, we had the chance to do something fun. We got to sneak away and stay overnight in a hotel. We've done it before, planning little getaways, but it's always exciting for me when we are able to spend the night in a hotel. I usually prep days in advance for any trip we take, even if just overnight, but my daughter's injury from mid-March had us unsure if we'd be able to actually go until the day of the trip.

Mid-March to Easter weekend was not easy for Ronan’s little sister. At that point, she'd been home from college unexpectedly for weeks. She was also post-op for the second time, still in pain, and still coming to grips that she was still at the beginning of a long recovery. Unable to return to school and to campus life she'd grown accustomed to, I knew we needed to get her out of the house. With a school break coming up for one of our other children, and with me on a break from work also, it was the perfect time to pack our bags and just go.

One of our favorite beaches is only a few hours away, so we thought let's get out of town, even if only for one night, to boost her spirits. It was a last-minute trip, but we Izzy plenty of time to think about everything she'd have to manage. A familiar route and a room on the ground floor gave her some assurance. Ronan's sister said she could do it, so we got in the car and got out of town. I told her that at any time, we could cancel these plans and go home. I didn't want her to feel overwhelmed or think us having to still care for her while we were away would be a burden. Even at home, it was not a burden to serve her.

Wanting so badly to be back in her dorm, I was grateful that she was accepting of all the care we now had to provide for her. In the beginning, it was a lot. After the second surgery, it remained constant. We thought once the surgeries were over that she'd gain some independence back. That hadn't happened before Easter. Only last week, did she not need us as 24/7 as we had made ourselves available to her. It was understandable that Izzy was getting frustrated at how slowly recovery was happening. She needed a change in scenery.

And honestly, the rest of us did, too.

Normally, we run into gobs of traffic right before we arrive at our destination, but that day it was smooth sailing. It was meant to be Better than that, our first night in the hotel was so restful. The next morning, the weather was beach perfect. The kids were incredibly happy. My husband and I were completely relieved.

To top it off, my brother was staying in the same area that weekend, so we had the bonus of seeing family. Getting to catch up, eat out, sleep in, and to be able to manage both Ronan and my daughter well filled my heart and mind with peace. Being able to go to the beach and stay at the beach added more thrilling hours. After a full day in the sun, we went back to the hotel and got takeout, another treat.

We talked, we laughed, and we stayed another night.

It was a bit more costly, but booking two hotel rooms was the best idea as it gave the girls a chance to have more space and some extra time together. In a suite with us, Ronan also got more room and extra time with us. We were just not counting on him to stay awake all night that second night.
That extra time was something none of us really needed, but that is how night two went.

That's how the following weekend went also. After getting Izzy to a follow up appointment three hours in the opposite direction, Ronan had had enough sleeping for the night right after midnight. God bless him, it wasn't his fault that he was jarred awake after falling into the deepest slumber. Earlier that evening, after the appointment with the doctor, we cleaned out my daughter’s dorm room. A long day for each of us, Ronan had his own bed in our hotel room. Like home, he stretched out then curled up into the coziest position and fell asleep. When the gentleman in the room above us came into his room in the early hours of the morning and banged all sorts of things, Ronan woke up.

For the day.

And wouldn't go back to sleep.

I could see his silhouette from where I was in the other bed. Please, please, I prayed, please, Lord, help him go back to sleep. I'm not sure what the man upstairs in the hotel was doing, but at one point he fell down hard. Ronan sat up, looked around, looked over where my husband and I were and said, "Da-da."

Two more times he called out.

"Da-da. Da-da."

Then there was a fourth time, “Da-da.”

I cannot tell you how sweet that sound was!

But at 2:04am, it was not the sound I wanted to hear. Clearly and fully awake, I went over to Ronan and tried to snuggle him back under his covers.

2:11am. He was not having it.

2:18am. Still unsettled.

2:34am. Now we're both pretty much wide awake.

I'm not happy about it. He's not happy about it. At 3:05am I debated very seriously getting in the car with Ronan and leaving. We had two cars for this trip. Not just because we were packing up the rest of the dorm room, but because Izzy's car was left on campus when she came home to recover from the first surgery. We finally had a free weekend to get it. I've left vacations mid-vacation before, and in the middle of the night, and I had every chance to do it again. I realized, though, that I'd have to get gas for my car if Ronan and I were to leave early. Not knowing the area well enough but knowing that it was not recommended to be in certain parts of the city at certain hours of the night, I opted to stay and not sleep with a very disgruntled young man who couldn't fall back asleep.

Ronan at least stayed in bed. And around 5am, he finally quieted down and drifted back to sleep. Once he nodded off, I could sleep. Our alarms went off a little after 8am, but the obnoxious upstairs neighbor had gotten up earlier than that. I couldn’t believe it. Stomping across his floor/our ceiling had me wide awake again at 7:11am.

Like the second night in the other hotel, this night turned into another one of the worst nights ever. We had planned to meet up with others for breakfast, but I opted to just go home. With about 2 hours of fitful sleep, I was in no mood to be social. Ronan was not either. I was also afraid that if I’d stayed, I’d be too tired to drive home later. So, once he was dressed and fed, he and I went in one direction while the others went in another. Since we’ve been back home, Ronan’s had peaceful sleep. He’s actually slept in past 10am a few days in a row. Oh, to have such sweet slumber!

I’ll hope for that one day.

I always appreciate being able to get away with the family. I end up forgetting about the bad ones, but the good memories we make while on trips are ones I truly cherish. As fun as it can be to sneak out of town, I’m happy to be home for a stretch. Other adventures surely are out there, but they’re going to have to wait a bit for me to find them.

Cathy Jameson is a Contributing Editor for Age of Autism.

Note: Cathy's words never fail. But music speaks to her.

By Cathy Jameson

Even before the month started, some were on edge.  April is when we usually get the updated autism numbers.

1 in 31. 

That’s not alright.

Then we saw Sec. Kennedy attacked again for speaking up for a number of affected children in our community.

That’s not alright either.

Years ago, I looked forward to April.  Not just because I get to celebrate a birthday but because I loved making my fun, little autism action month playlist.  No longer does the music move me, though.  I spend more time in silence than dancing in my kitchen.  That’s because celebrating a diagnosis doesn’t make sense and because as Ronan grew, so did the struggles.  Let me be clear – he is not the source of the struggles; managing finances, dealing with side effects from medications, and jumping through hoops while receiving inadequate care are the source of many of the struggles.  They come in waves, and now so does the desire to listen to music. 

Lately, instead of a full playlist, it’s been one song that captivated my heart, my mind, and my soul when I reflected on April and what it’s brought.  This year I so badly wanted Three Birds to be my one song, because I know that eventually, everything’s going to be alright.

But this year, with everything we’ve learned, dealt with and will deal with, my one song is from the Yeah Yeah Yeahs.  My favorite thing about this one, besides that it is so very good, is that one of my kids has it on their playlist.  When the kids are all home, almost as soon as they’re all pig piled into the house, the music goes on.  They crank it to a respectable level, and we sing.  Sometimes, when the music moves us, we dance. 

When the kids are home is the one time I crave hearing music, even if the theme of the song is that your head that’s about to roll. 

https://www.youtube.com/watch?v=auzfTPp4moA

The month of April ends this week.  I hope and pray that more vaccine atrocities are revealed as this year goes by.  To do that, we need to see more information shared publicly, and we need to deal with the fallout from it.  Seeing the truth being revealed finally, it’s happening!  Some of us need to heal and go through all the emotions that come with that – including rage. 

Cathy Jameson is a Contributing Editor for Age of Autism. 

By Cathy Jameson

On my first day off in weeks, I found myself driving toward the mountains.  It was an unexpected trip, but with everything going on, it was the best day for me to go.  My daughter is recovering from a second surgery after an injury that happened mid-March.  She left campus that day with just a backpack.  Hoping she’d be back taking classes there, she’s been online keeping up with school from a distance.  A vehicle, a dorm room full of clothes, school supplies, and more, we just haven’t had time to retrieve anything.  The hope that she’d return to school also kept us from rushing to pack things up, too.  With just a little over two weeks left of this semester, we thought it wise to begin the pack out.  Hoping to go with me, it was better for the kids to stay home so I could get in and get out of the dorm room as fast as possible.  With the help of Ronan’s younger brother who lives close by, that’s exactly what I was able to do.

I gave up a few things for Lent when it began, but I keep a constant fasting of not listening to the radio while I drive.  I started that practice a few Lents ago, and I’ve stuck with it now for a few years.  If you know me, you know I’m an 80s girl who loves her music, especially while driving!  But that quiet time in the car gives me extra time to think, reflect, and pray.  While driving through the mountains on Holy Thursday, after a terrible night of sleep, I needed something to keep my mind going.  So, I turned on the radio.  I don’t know the stations too well, but I knew I could find some Christian music and some pretty bad heavy metal music stations in the last 45 minutes of my trip.  I turned the dial until I found one with the least amount of static and was greeted by a familiar voice.

Chuck Swindoll, a pastor who my Mom used to listen to back in the early 1990s, had a very timely message.  That morning message, like some I remembered, was spot on.  Reflecting on Matthew’s gospel, Swindoll spoke of the Resurrection.  So, so timely!  Reading from the Bible, he recounted Easter morning:

Suddenly, as the women approached the tomb, they felt an earthquake.

An angel, whose face shone like lightning, appeared at the tomb.

The stone was rolled away. 

The guards shook with fear and fell into a dead faint.

The angel spoke to the women saying, “Don't be afraid!  I know you were looking for Jesus.  He isn't here; He has risen from the dead, just as he said would happen.”

“Come, see,” the angel told the women, “See where his body lie.”

Then the angel said to go quickly and tell the disciples, “Tell them that He is going ahead of you, to Galilee.”

“…and He will see you there.”

The women went, and when the guards woke up, they went into the city.

Meeting with the leading priest who then met with the elders, the guards were given a bribe.   

The elders said, “You must say Jesus' disciples came during the night while we were sleeping, and they stole his body.  If the governor hears about it, we will stand up for you, so you won't get in trouble.”

The guards accepted the bribe and were given a script.  Their story spread widely among the Jews…

…and they still tell it today.

More believed that lie than believed the truth. 

More believed the words of critics and skeptics than of the women who were living that day and never before or after lied to us...but somehow lied to us about the Resurrection.

The witnesses were silenced, but they were grateful to live by the truth and to die for it.

Before my drive to and from the mountains late last week, I knew that I’d missed a lot of news.  I missed the updated autism rate announcement, and I missed Secretary Kennedy’s https://www.ageofautism.com/2025/04/secretary-of-hhs-says-autism-epidemic-is-real.html announcement.  When I had a minute to look at the internet before I got in the car, I gleaned from headlines, and from facebook posts, that something was off.  In giving up the radio, I also gave up listening to talk radio.  Easily I could’ve caught up on what the media thinks I need to know on my drive, but I randomly stumbled upon a radio station with a beloved pastor from days gone by with a message that was not just so perfectly timed for the holiest of weeks.  I thought it was perfectly timed for our time.

I’ve heard that Gospel story since I was a child, but not until this week did I think to compare it to a current situation – finally, our community of parents was heard!  But in sharing the message again, that for some children some vaccines cause some very serious health and development problems – parents were attacked again.  Parents who witnessed what happened to their child were silenced again.  Leaders in the health and media communities were quickly again providing scripts that don’t reveal the truth but that cover up wicked ways.  And the threat to the loss of power and money again seems to be at the core of the cover up.

The resurrection is one of the greatest acts. It's the fulfillment of God's promise, that the gates of Heaven will be open to us.  Live by His word, and we will gain eternal reward.  It’s a lifelong goal for many.  Life here on earth, though, can be full of trials, some created by non-believers.  It’s only their own gain that they live and breathe.  They care not who gets hurt by their actions and inactions.  Those parents who were silenced for speaking out decades ago are being silenced again by the non-believers.  They must persevere!  I have no doubt that they will, because a higher power has called us to always live by the truth. 

To those who continue to witness, who continue to speak up despite the skeptics and the critics…thank you.  You, your work, your children, and most especially your faith, does not go unnoticed. 

Cathy Jameson is a Contributing Editor for Age of Autism.

https://www.youtube.com/watch?v=TPE9uSFFxrI&list=RDTPE9uSFFxrI&start_radio=1&rv=7hZFkWvUnuc

By Cathy Jameson

…I declare a meme war.  Silly, right?  But a worthwhile pastime for some. 

Every now and then one of my kids and my sister send each other some of the funniest memes or gifs.  It’s so fun to watch my child bust up laughing while searching for the perfect one.  It’s even funnier when they receive a more hilarious response from their aunt.  I was thinking about that back-and-forth exchange earlier in the week when I started brainstorming for this post.  I looked back at some of the images I’d saved the last few weeks, but nothing made me laugh out loud like the kids’ images do.  Instead, I found screenshots I’d saved of some really good messages.  Then I went looking for more.  So today, as we make it the half-way point of April, I thought I’d share them here. 

1, 2, 3, 4, I declare a meme war…

This one was perfect for April.

This next one is a strong reminder why some parents are vocal and continuously speak up – because their children can’t.

And why we cannot and will not celebrate a diagnosis…

Thankfully, some people are using their platform to call it what it is.

And others are filling their feed with facts. 


They do this because the mainstream media prefers to side with big pharma.

The media and big pharma would probably want us to live in Clown Earth all of the time.
Thank goodness we don’t, and thank goodness for rabbit holes! It’s what got a lot of us to start thinking beyond what we were being told.

Parents who do the work, who read, and who begin to ask questions understand that something isn’t adding up.adding up.

Insane, right? Even the dog owners are cluing in.  

It’s crazy what we’re told to believe and that we just need to trust our doctor, trust the science, and

trust that it’s not the vaccines causing problems.
It’s exhausting. 
All of this.  But will soon, I hear, (click for an early Easter egg!) be a little bit rewarding. 

So, cheers to those who’ve made it this far advocating for something better.  If not for our children, for other people’s children – may they be spared what so many of ours were not. 

Cathy Jameson is a Contributing Editor for Age of Autism.

Thanks to Cathy for a post about autism ACTION during a month that makes many of us want to log off every device we own. Send them to those who need a nudge to do the right thing, too, which is to use better data to provide better care for our beautiful children. 

By Cathy Jameson

Better data for better care

To bring the community together

Data solutions drive better data for better care.  

That’s my non-technical and very basic synopsis of an incredible, well thought out solution that the Autism Knowledge Gateway aims to provide. 

I got to meet founders and supporters of Autism  Knowledge Gateway (AKG) several months ago.  In attendance were doctors, civic leaders, medical providers, therapists, and other parents like me.  Humbling is the adjective I’d use to describe how it felt to sit at the table with some of these community leaders.  All came to support the AKG’s mission. 

The evening began with a mixer and ended with gracious hope.  I took notes during the presentation and during the speeches given by the panel.  The goals were laid out for those new to the mission with the promise to help advance autism care, which is something that has been lacking in certain areas of the medical field.  Personal stories from parents who have adult-aged children, like my son, as well as doctor’s recounting their observations from the field, peppered the night.  One story I share, from around 2008 about running into problems getting proper medical help, still leaves me dumbfounded.  Struggling again with bouts of constipation, I booked an appointment with a gastroenterologist who was well known in our area.  If anyone knew more about the intestinal tract and poop it was a good GI doc.  Right?  I was shocked when this one could not give me one tip, one remedy, or one logical reason why Ronan was dealing with chronic constipation.

After examining Rone, after listening to my timeline of recent medical events, and after hearing me ask for his expertise,  the doctor walked over the sink in the exam room.  Turning the water on, he literally washed his hands of us while saying, “You need to ask the autism doctor about this.” 

Stunned, I blurted out, “But you’re the…the poop doctor.  You can’t help us with a basic constipation issue?” 

Drying his hands, he repeated, “Ask the autism doctor.” 

It was a new low.  Of all the specialists on our growing team of providers who I thought could help us, the GI doctor then walked away from us.  “The nurse will see you out.”  Needless to say, we never went back to his practice. 

Some providers are willing to dig in and look for root causes to help their patience attain the care they need.  For those that do, AKG is something they may want to use. 

Curious what files you can search?  Register to see AKG in development. 

Listen to what other parents, and those behind the production of this tool, have to say about the motivation to create a database.  The best part is that it’s not just for medical providers but for anyone.

What roadblocks have you run into when taking your child to a doctor?  Were the problems your child was facing common to autism symptoms or something different?  The latest one for us isn’t about getting a doctor to treat a co-morbid issue but about the ongoing battle to get timely dental care. 

Ronan needs some dental work that would’ve had a typical patient in and out of a typical clinic within a few short weeks.  It’s taken us several long months to schedule the same kind of procedure.  We’ve expressed our incredible disappointment and great concern with the specialty clinic, but they tell us their hands are tied.  We might’ve gotten an appointment a bit sooner had one of their schedulers not screwed up the entire schedule.  Unfortunately, the only one paying the price for that mistake is Ronan.  In September, his appointment was originally scheduled for December.  It then got pushed to January.  It’s now not going to happen until the last week of May.  Like before, when we had a similar delay with a different specialty dental clinic, an autism diagnosis didn’t make anyone move faster; it was other massive delay after another and one more awful excuse after another that we experienced.

Moving forward, maybe a tool like the Autism Knowledge Gateway will open the door for more providers.  Maybe it will help them understand and respect that our children need not just specialized care but also priority treatment.  Maybe then we will see conditions that are associated with autism being taken seriously.  If it’s up to us to help providers know that that information exists, please share the links above with those you trust.  Send them to those who need a nudge to do the right thing, too, which is to use better data to provide better care for our beautiful children. 

Cathy Jameson is a Contributing Editor for Age of Autism. 

We ran this post from Cathy Jameson last April. As we approach the Month of Blue April, we will remind you over and over that we see you. Every one of you. And we always will. Cathy has today off.

###

April 21, 2024

Note: You must share this poignant slice of all of our lives with others. That's your homework today. And grab a tissue. You'll need it. XOX

By Cathy Jameson

We had a busy weekend last weekend with the kids in different directions.  We couldn’t all be at a friend’s celebration on Saturday afternoon but would finally meet up later around dinner time.  Having spent most of the day out of the house, I was tired and didn’t want to go home and make dinner.  I had Ronan with me, and he didn’t want to go home yet either.  He knew we’d be driving by one of his favorite restaurants, so I called my husband and asked if he and the girls could meet us. They could. 

We had to wait about 20 minutes to be seated, so we spent that time browsing in the restaurant’s store.  Always a treat to see the ‘old timey’ games and candies, Ronan was so patient as we reminisced.  I was getting hungrier by the minute, and I imagined he was also.  Just as I thought I might need to grab a snack from his bag, the host called us to a table.  We are usually seated by one of the large windows toward the middle of the restaurant when we eat there.  This time the place was busy and got seated at the very first table customers have to walk by as they enter the dining room.  It wouldn’t bother any of us because we were so hungry and would not care that we were next to a busy area. 

I was glad we got the table when we did.  While the kids started to look at the menu, I noticed that other parties were soon standing at the host’s station asking how long it would be to get seated.  

Our server was quick to help and clued in that Ronan was not going to order for himself.  She watched us sign to him and watched him respond with signs back to us.  Ready to help, she got his drink order right away.  While we waited some more, because the restaurant was still very busy, we chatted, we looked at pictures, and we made sure Ronan was happy.  He was.  I gave my attention back to the girls, but out of the corner of my eye, I saw that someone else was watching them, too. 

The few minutes before, my daughters were taking pictures of Ronan and posting them in our family chat.  Laughing at the edits they made and carrying on like the best of friends, we were getting a little silly in our little corner.  Maybe that’s what caught this older fellow’s attention.  I glanced toward his general direction, not staring directly at him yet.  Ready to pounce, if needed, I slowly turned and faced him. The girls with their backs turned, were oblivious.  My husband, though, who was seated next to me at our round table also realized that we had an audience.  Then we noticed that this guy was not alone.  

Another man was with him. 

I wasn’t nervous.  Other places in that area would’ve had me scoop up my kids and run.  But we were in a safe place with tons of people, mostly families, enjoying an evening out.  The older man didn’t look out of place.  Neither did the younger man behind him.  Looking past the older man at the younger man now, I saw something familiar.  His stance, his low tone, his expression…

It all looked a little like Ronan.  

Trying to not make it obvious, my gaze immediately moved back to the older man.  He was much older, more like a grandfather.  He was tall but his back was hunched, almost like he was carrying a large weight.  The young man, who had telltale signs of developmental delays the more I observed him,was thin and much, much younger.  If I had to guess, I would’ve said he was in his teens.  

He was actually in his late 20s.

I know that because the older fellow approached us.  I could tell that he wanted to say something almost as soon as I saw him staring at us.  It was a few long minutes of silent watching, and never a creepy kind of watching.  He looked at Ronan, I mean really looked at him.  Then he looked at Ronan’s sisters.  He turned his head and looked at both me and my husband, then back to Ronan.  

During that, the girls were engaging in their own conversation for the most part, but they would try to get Ronan to respond.  It’s typical behavior that they always do, but I think it took the man by surprise. It took him by surprise, but it also made him smile.  That’s when he came over to our table.  

Hunched over, with arthritic fingers, and a slow gait, it was just a few steps he had to take, but it made a huge impact.  

He thanked us, and he encouraged us to please continue to treat Ronan like we had been doing.  Walking to Ronan, he put his hand on his shoulder, patted it gently and with so much compassion.  “He’s 27,” the fellow said as he pointed to the young man behind him.  “He’s 27…his name is Max*, he’s non-verbal, but he’s more like a 7-year-old.”  *name changed

I choked up.  Ronan’s sister, Izzy choked up, too.  Wiping tears from our eyes, we were filled with emotions we didn’t expect. He and my husband spoke for a minute, but I remained speechless. I thought we were going to get breakfast for dinner and then scurry home.  

We got so much more than that.  

As the older man had started to stare at my family, I had begun to stare at the young man.  Assuming it was a grandson, I thought how amazing that he took him out to eat.  Going out takes a lot of work.  It takes guts, too, for some people.  Sometimes it’s easier to just stay home. But for us, we always want to try to do things together as a family.  Even though this was one of Ronan’s favorite places, anything could set him off.  Thankfully, nothing did.  If anything, this night out set something else in motion.  

We were seen and made an immediate connection.  Very quickly, Ronan’s little sister wanted to do something about it.  The older man motioned for the younger to follow him as their table was called. As they walked away, Izzy wiped her eyes and asked, “Can we pay for their meal?” Trying really hard now not to burst into tears as I answered her, I said, “Oh, honey. That’s exactly what I was thinking we should do!”

So, we did.  

Izzy excused herself from our table, scooted back to the store and purchased a gift card.  Once we were finished eating, she took the gift card and walked over to the men who befriended us.  “I know how hard it is to take of someone like Max, so we wanted to show our kindness and give you one less thing to worry about.  It’s not much, but we wanted to give you this for your dinner.”  

The older fellow balked, “It was nothing, no, no, you don’t need to…”

But Izzy insisted.  

Normally I would never let my teenage daughter cut off an adult, but this time, she managed to do that while being incredibly respectful, compassionate, and kind. Trying not to tear up again, she said, “We know you can pay for it, but please, we really appreciate you.  We want you two to enjoy your dinner here like we got to.” She gave him the gift card and caught up with us as we were heading to the door.  

“I’m really proud of you.  I’m glad you got to represent us in that moment, too,” I said to her.  We hugged, and then like usual, we split up and went in different directions—the girls off to see friends and the rest of us back to the house.  

Heading home, I was thankful for how well Ronan did.  It was a really long day for him, and he handled all of it very well. I was also thankful for a good dinner out with my silly family. I was thankful for connections we made and for compassion shared.  Special needs families aren’t always treated with respect.  Tonight, we were, and my children quickly offered that to another family.  I know they’ll be stronger because of all they witnessed that night. 

Cathy Jameson is a Contributing Editor for Age of Autism. 

https://www.youtube.com/watch?v=WFY2Hdh7cvA

Rest in peace, Mandisa.  May your music continue to inspire those who, every now and then, feel down and out. 

By Cathy Jameson

It’s unsettling to see your child’s phone number pop up but you don’t hear your kids voice on the line.  Your heart sinks a bit when a friend of theirs starts out with a cautious, “Hey…Mrs. Jameson?”  You know right away that something is wrong.  Tuesday afternoon, one of Ronan’s little sisters suffered an ankle injury from a fall.  Fielding phone calls from Ronan’s brother, who was on campus when his sister got hurt, and from my husband, we set a plan into motion.  While doing that, we also talked vaccines, because we knew they were going to be one of the first questions asked during triage. 

They were.  

Knowing a little bit about which ones we thought would be discussed, I shared what I could remember about the tetanus vaccine.  If offered, I said that would be a hard no.  

Instead, “Ask for the TiG, and clean that wound well!!”  

I then searched  https://web.archive.org/web/20130730035001/http://www.modernalternativemama.com:80/blog/2013/07/24/the-media-on-tetanus-teaching-or-scaring/comment-page-1/# for one of the original articles I remembered reading years ago.  I needed solid info then when one of the kids stepped on a nail that went through their shoe and into their foot.  During my search, I re-found this webpage https://www.amoils.com/blogs/health-blog/myths-legends-surrounding-the-tetanus-shot with information I remember reading when articles and blogs about the truth https://web.archive.org/web/20130807165223/http://gianelloni.wordpress.com/2013/06/11/the-truth-about-tetanus were more commonplace and not censored.  

P.S. Thank you, waybackmachine!

The current injury we were dealing with reminded me of a time in 2020 when we also needed urgent medical attention and an unnecessary shot was offered.  https://www.ageofautism.com/2020/11/you-do-not-need-a-flu-shot-for-a-broken-arm/comments/

Tonight, my daughter fell and busted up her elbow while playing basketball.  She immediately cried out in pain.  Pain and swelling in her arm increased, so we jetted over to urgent care to have things checked out.  Looking over my shoulder as we checked in, I could feel Izzy grip my arm as I answered some questions.  The "Does the patient need a flu shot and/or a pneumonia shot?" question on the intake form immediately made her skeptical. 

"Mommy,” she whispered to me, “…a flu shot??"  

--

This time again, armed with useful information that we knew would be more effective and logical, the TiG, not a Tdap vaccine like one medical person suggested, was requested.  The TiG was administered with no pushback, and the wound was ‘irrigated with copious irrigation’.  With that part taken care of, we concentrated on what else was needed – immediate surgery.  It would be hours before one of us could arrive, but the surgery wouldn’t wait.  We are so grateful that it was successful and are now praying for a quick recovery, full healing, and for my kiddo to be back up on both feet soon.  

My kids are determined, resilient folk.  They are active, adventurous young people who every now and then like to sit down and chill out.  To see one of them forced to sit things out is hard – so hard for them, and so hard for me and my husband to witness.  With things in a holding pattern until after a follow-up surgery is discussed, schedule and completed, we wait, and we hope.  

It’s never an easy thing when you’re miles and miles away from your college-aged kid when they get hurt.  But with an amazing amount of strength, that kid is already in the next phase – of healing, of managing changes, of reworking plans to get things back on track while resting and recovering here at home.  The road ahead won’t be easy, but with us working together, I’m confident that Ronan’s incredibly athletic and talented sister is going to get back up again and shine brightly like always. 

Cathy Jameson is a Contributing Editor for Age of Autism.

By Cathy Jameson

It’s an awkward title, but I knew I was going to borrow those words when I heard them midweek last week.  After leaving the small postal place in the little strip mall, I thought about my next three errands.  I still needed to stop at the pharmacy, the bank, and the store.  I’d been able to get to work earlier than usual morning, stay later than usual that afternoon, and also run more errands than usual.  That’s all thanks to my college-aged kids who were home last week on their spring break.  Ronan saves all of his smiles for the siblings, and they beam when he shows them just how happy he is to see them.  They smile right back and carve out time for him on their trips back home.  

It wasn’t the most exciting week for the siblings, but they got to see some friends from high school, and they also got to rest. It filled my heart having them home.  When they are here, the house is more alive.  It’s louder, but I don’t mind the extra silliness and busy-ness that comes with all five at home.  As heartwarming as it is, when they want to just hang out at the house and when they offer to help Ronan, I take full advantage and run out the door away from everyone. I got to do that a few times last week, and I got so many more things done that I typically get done!  

We have an amazing caregiver with Ronan weekdays, which allows me to get to work, but she can’t stay much past when I am done at work.  When the kids are back on campus, weekends are when I jet all over town trying to get all my errands done.  It can be exhausting to have to do that, so I felt blessed with how much extra time I had last week, especially on the day I was doing multiple errands in one afternoon.  I knew that I had the luxury to be out of the house, but I didn’t want to stay out longer than necessary.  I really wanted to go home and hang out with the kids.  But something pulled me to be social when I walked out of the postal place.    

My eyes were drawn to a woman who I could tell had watched me walk out of the postal place.  Instead of going toward the right where my car was, I walked straight to her.  “Hi,” I said.  She was standing next to her car, but as I got closer I could see that was actually leaning on the car.  It looked like she was doing that because she needed some support to stand up.  An older woman, who had what looked like swelling in her lower legs, smiled at me.

This post from Cathy originally ran in February of 2009 with the title, "Freedom to Think."  And today, it's TIME. 

Freedom consists not in doing what we like but having the right to do what we ought. ~ Saint John Paul the Great

by Cathy Jameson

This was originally posted on another platform several years ago. I hadn’t thought of it in a long time, but the topic of ‘refusing’ vaccines came up in conversation with a few friends last week.  I edited the post a tad for our readers.  It’s a creative writing piece I wrote, but it’s based on actual events…ones I’d guess several of you have encountered before. 

---

A young mother sits in the pediatrician’s waiting room.  She looks around at other young parents.  Are they as nervous as she is? Are they going through a list of questions for the doctor, too?  Do they even know they should be asking questions?  Her child’s name is called, and she strolls back to the small exam room ready for his checkup.  She’s ready to listen but is also armed with confidence. 

The nurse checks the baby’s height, weight and head circumference.  A quick review of any changes in his development and recent illnesses is documented.  The young mother prepares herself for the pointed statement that comes next, “And, he’s due for his four-month shots.  Here’s something to read while you wait for the doctor.”  Without even glancing at the Vaccine Information Statement (VIS) papers, the young parent looks into the steely eyes of the nurse and says, “Oh, no thank you.  We’re not doing those.”  Stunned, the nurse tightens the grip around her pen.  A few seconds go by, and the nurse replies, “Well, the chart says you skipped shots at the last check up, so we can catch him up today.   Read the papers, okay?  The doctor will be in shortly.”  

By Cathy Jameson

I’m taking a course on classroom management for a certification I’m working on.  Most of the course content is information that I already know.  It’s pretty self-explanatory, too.  If a student’s behavior interferes with their studies, then they might not readily gain knowledge they need to advance in their studies.  One concept was new to me, though, and that was it’s not just the student who could fuel the negative actions in a classroom; a teacher’s behavior can create a discipline problem, too. 

When reading case studies about educators who negatively contributed to their classrooms with behaviors that turned into misbehaviors, I could immediately think of a few real examples from my time in the classroom.  Instead of creating a warm, welcoming, safe environment where students learn and grow, these teachers created a mismanaged, unwelcoming environment.  Learning didn’t happen well because their students were more rambunctious and easily directed.  That made redirecting them to stay on task more difficult.  It’s not a new concept, but I just hadn’t read about it in a textbook before.

Something else I knew already that one of my lessons covered was that a teacher, especially those who teach the youngest learners, must be present with their students for their students.  Distractions happen, but in order to teach well, a teacher must be alert at all times.  That means teachers need to leave their emotions at the door and put children’s needs first.  That means following an appropriate routine, and also following through with consequences, with as much fidelity as possible. 

Basically, if the teacher does a good job, then the students can do a good job, too. 

I had another post about the measles started for this weekend until I recalled that concept.  I didn’t want my post to be a repeat of what we’ve written about back in 2015 when measles news was making the rounds.  But then, when I sat down to continue what I’d started, I didn’t want to write so much about the parents and the children who are being subjected to classic fear mongering that comes with news stories like we’re currently reading.  So, I asked myself what angle could I use this time?  Well, if the news and if doctors would tell the whole story, and not cherry-pick the scary parts, then the public wouldn’t need to be alarmed as much as they are. 

If this, then that.  If I applied it to the latest measles news, like I do with students’ behavior, I might say something like…

By Cathy Jameson

You know what we mean. XOX

I had tons of thoughts run through my head after reading Ginger Taylor’s last Substack.  I’ve yet to think about what my invoice to the government would be, though.   Ronan and Chandler are about the same age, so it would be at least the same figure that Ginger calculated.  Ronan is still crippled with a myriad of medical issues that have us seeing specialists every few months, which could actually bring the total up a bit more.  The 24/7 care is costly – financially, emotionally and yes, even psychologically sometimes.  The emergency room runs, the specialty foods, the years and years of me not being able to work – it's added up.

After thinking about how much this life has cost, I needed to think about something else.  So, I thought about Ginger and the great amount of knowledge she has.  Had she and I not connected years ago, would I be as aware of things as I am now?  Thinking about how much I’ve learned from her had me going back farther in time.  I went back a few years and thought of other moms from the early days, like Kim Rossi, and Karen, and Sylvia.  Others popped into my mind like Marcella, Becky, Holly, Melissa, and Betsy.  At some point, each of them imparted wisdom.  Each of them offered me something else – hope!  The online connections we had then weren’t just until a platform ran its course; these women remain a lifeline for life. 

And it isn’t just the moms who should submit an invoice.  Plenty of Dads should also, like Mark, Chuck, Tim, the other Tim, Harry, Barry, Jerry and Tre, God rest his soul.  One spouse may outwardly be able to handle the effects of their child’s vaccine injury better than the other, but it can weigh heavily on both at any time.  It could cost them their marriage, too.  Most of the Dads I know or have met have weathered the storm bravely.  But you know what?  I’d be okay if I’d never met any one of them. 

I’d be okay if our paths never crossed.

I’d be okay if parents weren’t contemplating submitting an invoice to the government. 

If we didn’t have to submit an invoice it would mean that our child wasn’t vaccine injured.

It would mean our children were healthier.

It would mean that maybe we parents could’ve worked and even advanced in our field.

Being able to work might mean that we would have provided more to our other children. 

That means that siblings wouldn’t have had to sacrifice parts of their childhood like many have.

I’ve often said that if I could go back in time and change what happened to my son I would.  Had I never booked his well-visit appointments.  Had I never trusted the pediatrician like I did.  Had I known to question.  All of that will always haunt me.  It’ll always make me wonder, if I could go back in time would Ronan be healthier.  

I think yes. 

But if he was healthy, I’d have missed out on meeting Ginger.  I wouldn’t have started writing.  I wouldn’t have learned as much as I’ve learned nor made the lifelong friends that I have made.  If only Ronan was healthy.  I wouldn’t be sitting here calculating how much has been lost, and I would absolutely be okay with that. 

I really, really would. 

Cathy Jameson is a Contributing Editor for Age of Autism.

By Cathy Jameson

If you can believe it, I didn’t watch or listen to any of the hearings this week.  I wanted to because I’m all in for Team Bobby and pray that soon he’ll be our Secretary of Health and Human Services.  But work and life and extra stuff popped and kept me from being able to tune in.  I did a quick peek on social media late Wednesday evening and quickly read headlines Thursday morning.  From those, I could see who doesn’t want RFK, Jr. sworn in.  I’m praying that their loud voices were drowned out by the truth.

Other people have written recaps of how things went for Bobby (thank you, other people!).  Included in those columns and blog posts were topics we have discussed for years, including a distrust toward vaccines.  Even if I had time this week, though, I know I didn’t want to write about what’s been written about so.many.times.already.   It’s so important to speak the truth we know, but it can be exhausting to write about it.  Today, since I don’t want to rehash what has already been said well by others recently, I thought I’d share someone else’s voice and in a different format. 

Here are a few documentaries that I’ve found compelling, not all about vaccines, but they include important messages about an industry that stays protected.  Some readers may have already seen these documentaries when they debuted, but for our newest readers – take a look.  If your family and friends don’t want to hear what you have to say about the government protecting pharmaceutical companies or about vaccines you care not to get, maybe they’ll respect the message when offered in a different format. 

The Greater Good Movie – “An award-winning character-driven documentary that explores the cultural intersections where parenting meets modern medicine and individual rights collide with politics. The film offers parents, doctors and policy makers a safe space to speak openly, actively listen and learn from one another. Mixing verité footage, intimate interviews, 1950s-era government-produced movies and up-to-date TV news reporting, THE GREATER GOOD weaves together the stories of families whose lives have been forever changed by vaccination.”

Trace Amounts  – “After recovering from a devastating sickness that brought him to the edge of despair, Eric Gladen would quit his career, move into an RV, and travel the country for years trying to piece together one of the biggest childhood epidemics of all time...and he just may have done it.

Age of Aluminum – “Aluminum is booming and found its way into every facet of our lives: But what do we actually know about the side effects of our daily companions?”  [fyi, viewer warning posted on youtube.]

Bleeding Edge – “This eye-opening look at the fast-growing medical device industry reveals how the rush to innovate can lead to devastating consequences for patients.”

Others documentaries that I have shared with friends in the past include The Business of Being Born, and More Business of Being Born, but now it’s your turn.  I love a good documentary, so what have you seen?  What message did you hear and want to share with others?  If you could film your own documentary, what would it be about?  I’ve got one or two ideas up my sleeve.  I’ll hope to have time to get working on one before long.

Cathy Jameson is a Contributing Editor for Age of Autism.

By Cathy Jameson

I had five minutes of free time in between two big tasks last week.  It was after 7pm, and I still had a to do list to complete that felt like a mile long.  Unless it’s the weekend, I don’t get on FaceBook until the evening.  Needing a break and curious what social media was reporting as news, I popped onto FB.  Knowing I didn’t have much time, I started first with checking out my Memories/On This Day.  After seeing this picture, I didn’t scroll to any other pages like I usually do. 

This picture took my breath away.

To some it’s just origami.  To me, it’s an instant reminder of the day the world stood still.  This beautiful photo is of the paper crane my daughter gave me back in 2017 soon after Dan Olmsted died.  Tears.  I felt them coming, and with how long it’s been, there would be a flood of them. 

During the time between Dan Olmsted’s death, which we remembered last week, and the celebration of life, which would be later in the spring, was a difficult time for many of us.  It would be months before we could gather as a community to grieve together and to also celebrate the life he lived.  I hung onto hope, to memories and to Dan’s last printed words wondering how could we go on without him?  My daughter, who was 10 at the time, picked up on how woefully sad I was the closer the date to that celebration of life was.  She gave me that paper crane, telling me, “Mommy it’s for you for Dan.”  She and my other children adored the man I called friend and mentor. 

The paper crane, a compelling symbol of hope, love, honor and peace. 

If that is not the epitome of what I knew to be Dan Olmsted and his work!  While some did not appreciate his investigative reporting, because of the truth he revealed,  Dan worked toward peace.  He honored us and our children in his posts and the hours of research spent prepping for them.  He shared love and in doing so, he gave so many of us hope.  On the occasions that Dan and I got to meet up, he himself was patient – with me, with my children, with the many questions I asked him.  As controversial as some of the topics were that were part of his articles, books, and discussions, he was also full of peace.  Always. 

Getting to meet Dan, getting time to ask him questions, and getting to hear him speak at events will be some of the greatest memories of my life.  Even if you never got to meet him, when you reread his work today, I think you, too, will pick up on each of the elements the paper crane symbolizes.  Through his work…

We hope.

We love.

We honor.

And we work so hard for peace – peace for our children, for our families, and for our community.  That can be hard to attain, especially when we’re in the midst of a storm.  But it’s a worthy cause to work toward. 

Dan Olmsted was noble, too, and the years he spent researching were important.  It still is!  And I pray that soon we will see healthier children and better futures for them.  Today, here, we carry on his legacy, and we promise to bring a shared message to the public.  It’s why we write, it’s why we research, it’s why we work as hard as we do, and it’s in great part thanks to Dan who held our little community together – and still does. 

To Dan, forever leader of the Rebel Alliance – you are missed so very much. 

Cathy Jameson is a Contributing Editor for Age of Autism.

https://www.youtube.com/watch?v=gd4dFXMuy-8

By Cathy Jameson

I just started another class on Monday.  It’s one is one of 2 classes that I need for a certification I’m working on, but already I’m knee deep in homework, reading and researching again.  I will hope to be able to share some content from the readings here if I find any of it AofA worthy.  Since I’m facing a few school deadlines this weekend, I am posting a just photo from our recent trip west.  This one did not go into the family photo album or in the story I recently shared here, but it’s something that’s definitely shareable.  

With anticipated changes coming next week, both at the White House and within government health agencies, I thought it pretty timely.  I’m not sure who put that little sign on that metal container in the Pacific Northwest when we were there last month, but I just had to take a photo of it.

I’ve been a dreamer and a believer all of my life.  For the last few years, though, I have had the hardest time imagining Ronan getting better.  He is in his early 20s now.  The older he’s gotten, the less I’m able to visualize a recovery for him.  I can visualize, though, that some people, like Fauci, could finally be held accountable for the horrible decisions they made during Covid.  That would be such a huge deal.  Imagine the implications! 

If that doesn’t happen and Fauci walks away from the disaster that he helped create, I have found consolation in knowing that because of Fauci and how big he thought his britches were, many everyday people had their eyes opened.  

Just today, for instance, I read a slew of great responses in a parent message board about vaccines and how many of the parents used to believe in them.  The original topic was exemptions for school.  The conversation went from a very simple sharing of a link to having parents divulge how they lost complete trust in the government thanks to people like Fauci.  What happened in 2020, and through the vaccine mandates, has these parents now running in the opposite direction.  They don’t need to visualize the truth about vaccines.  They can now actually see the truth!  That revelation has them wanting nothing more of what Fauci and the Biden administration forced on them and their families.  There’s so much victory in that that I won’t dwell too long on Fauci.  He’s really not worth any of my time or emotion, especially when I have a paper and a project due tomorrow.  

Tomorrow is a big day, not because I’ll have completed my first week of class.  It’s a big day for those who fought tirelessly for our children.  With tomorrow, change is coming, and it’s a good change that I can see will benefit our children.  It’ll benefit those other parents who have recently woken up to the truth, too.  Truly, tomorrow can’t come soon enough.  

To those who helped pave the way for a better tomorrow for us and for our nation, thank you.

Cathy Jameson is a Contributing Editor for Age of Autism.

By Cathy Jameson

I took 18 years off from work to raise my children.  I wouldn’t say that it was a break in the sense that I was taking time off from a job to get away from it or to relax for a bit.  I was fulfilling a different vocation during that time.  I had always thought about going back to a paying job when the kids were a bit older, but I felt a much stronger calling to stay home long past when other women might return to work.  While home with my kids, I was advocating, homeschooling, and keeping up with my typical children’s activities.  For my son with special needs, I was learning about long-lasting side effects, managing medications, coordinating therapies, and adjusting life when life needed to be adjusted.

A few years ago, I got a text about a job opening at a school.  I laughed.  Go back to teaching?  It was a dream of mine to do that, but now?  Ha!  Like I could go back to work, I thought.  My husband still traveled quite a bit for his job, Ronan’s needs were still pretty great, and my other kids’ afterschool and sports schedules kept me pretty busy.  I longed to use my brain in a different capacity again, but the very thought of being back in the classroom seemed overwhelming.  My friend texted more info and asked me to think it over.  Could I begin to juggle work and the intense demands life placed on me?  It was a part-time assistant position, and because the boss knew of my family’s unique needs, I would be offered some flexibility if hired.  They said that family – and especially Ronan, would come first, but I’d need to be available 20 hours a week.  From one hour to the next, nothing about our life at the time was consistent, but my husband and I went to task with this unexpected offer. 

We talked it over.

We played every scenario in our heads.

We wrote down all the what ifs.

We went back and forth with the pros and the cons.

It would be a huge adjustment for all of us if I started to work outside our home.  Ironically, though, only a few days prior had I shared with my husband that finances were getting tight.  When big problems feel like they are getting bigger, I also shared my worries with God. Lord, I shared, I need You to step in because I don’t know how we’re going to manage things right now.  While dropping the kids off at school later, I looked up toward the heavens and said, “God, I don’t know if our budget will cover everything.  It looks like we are going to be short this month.  I have moved money from one account to the next, cut costs wherever I could.  We need this much monthly to make ends meet.  Please help.”

When I got more information about the job offer, my pay, with benefits, would be the exact amount I’d asked God to help us with.  Down to the penny, it was the exact amount!!  I had told my husband that if every door opened – without us forcing any to open, I would consider that as a good sign for me and for us as a family.  I felt that proverbial door swing wide open when I signed my contract. 

That was six years ago.  I’m working more full-time now thanks to great support from the kids, my husband, and by being blessed with consistently kind and compassionate caregivers who work with Ronan.  Because of all of that, I also had the chance to take a class again.  I knew that would be challenging – not just the class itself but being back in studying mode.  That part of my brain craved the chance to learn in that setting again, but it has been a very, very long time since I sat in a college-level class.  Last semester, I proved to myself that I could handle the coursework, my job, and my role as wife and mother.  That had me looking at other educational opportunities – ones that won’t just benefit me but can benefit those I serve.  In looking for scholarships for my next endeavor, which will be a M.Ed. in Special Education, I stumbled across a word I had never seen – returnship.

It sounded silly.

It sounded made up.

It sounded awkward, too.

It may not be a word in my dictionary, but it’s a concept that also sounded empowering to those who are about to re-enter the workforce like I did after a very long stretch of time. 

When the kids were much younger and I dreamed of going back to work, I kicked around the idea of going into the medical field.  I wondered way back then about returning to school also – either in medicine or to be a therapist (as an OT or PT).  I had also considered one day looking at advocating professionally.  I’ve advocated for my son for two decades, but none of that work ever resulted in a paycheck.  Even though I had no training in it prior to his birth, I work my hardest to get things for Ronan.  If ever I chose to switch careers from education to being a paid advocate I would look at this returnship idea and for opportunities to be mentored.  Who better to ask for help?  It’s those who are steps ahead of me that have helped me the most. 

How about you?  When your child got sick or was diagnosed, did you have to leave your paying job?  Were you able to go back to work?  Did you stay in your original field or did another opportunity pop up?  I’m doing okay where I am, and I’m excited to pursue the next steps in the field that I’ve been most comfortable and happy.  Others have shared that my knowledge has helped them and their children.  I joke that I’d do it for free, but I am so grateful to have the time, the opportunity, and the support – from family and from those consistently kind and compassionate caregivers, to continue to do what I get to do when I’m at work.

Cathy Jameson is a Contributing Editor for Age of Autism.

By Cathy Jameson

I made a list for the kids about a week before we left.  A week would be plenty of time to cleanbedrooms and bathrooms, get laundry done, and pack for our trip.  We’d be heading to the end of the earth, I told them.  Our weather at home was mild at the time, but I asked them to make sure to bring winter gear.  If it wasn’t terribly cold, it would definitely be windy where we were going.

One by one, the kids looked at the list.  Easily I could’ve taken a photo and texted it to them.  I like to be able to cross things off, though, as I get ready.  Years ago, I’d be the one packing their bags.  Only once or twice have I regretted not packing for them.  Once at our destination, I’d discover that one or two of them had forgotten an important item I asked them to bring – like a bathing suit for the beach, or a nice pair of shoes for Mass.  Giving them more responsibilities and chores as they aged gave them the opportunity to learn how to be organized at home and while away from home.  This time, I didn’t doubt their capabilities as we prepped for our latest trip.  I was impressed with Ronan’s brother when he said he even saved a little room in his suitcase – for the gifts he was going to give (and for ones he might receive) and for whatever he hoped to find at the thrift stores the kids planned to visit.

When we were all packed and ready to go, we headed out to the west coast.  For big trips with all of us, I try to give us plenty of time to plan and get to the airport and to our final destination.  One mistake I made this year was waiting a week too long to buy our tickets. I’ve been able to get us some incredible deals for cross-country trips but not for this one. 
Besides paying a little more than usual for our flight, we paid much more than usual for the rental car.  The increased rental cost was partly because I forgot to reserve a car back in October when I finally bought the tickets. 

The other reason it was more costly was because we have to get the largest car any rental company has because all 7 of us (and our luggage) were traveling.  With how close to our departure date it was getting, vehicles were not just spendy – they were scarce.  My husband could find a minivan for us, so he opted for a Ford Transit that seated 12. 

I sometimes call us Team Jameson, and riding out of the city with all of our gear would’ve had us looking like an organized sports team. 

The day we left had us arriving at the airport very early.  Like for other trips we’ve taken, getting Ronan checked in as a passenger with special needs was easy.  He got an escort in the wheelchair that we request for him, which helps us bypass long lines at the gate and through security.  We got separated at security, though, because they would only allow 2 other passengers to accompany him.  That was a little nerve wracking, but we chalked that up to part of the adventure and found each other later at the gate. 

No matter what kind of trip we take, either a road trip or catching a flight, I create a separate list for Ronan’s things and bring separate bags for his items.  I wouldn’t realize it until minutes before we boarded, but I accidently booked separate seating on the flight for Ronan. 

Actually, it was separate seating for all of us!

Join us in wishing Ronan Jameson a very happy 22nd birthday!

By Cathy Jameson

I was hoping to go into work early on Thursday last week.  I wanted to finish a project and take care of something that had popped up the day before. With how busy my day gets, going in early would be a gift.  Having my older kids home from college last week was an even bigger gift.  I've been able to stay at work longer and go in earlier with them home on their Christmas break.  Our caregiver gave up a few of her hours so that they can clock in more, which has been a very generous gift to them.  It's been so nice to have the house full of helpful siblings again!

I'm sure the kids thought they'd get to sleep in a bit now that their classes were over, but Ronan decided to get up at 3am three days in a row.  I got tons done before I left the house for work, but those early wake ups made for extra-long days for him and for me.  By Thursday, Ronan settled down and woke up at his more normal 9:30am time. I wouldn't know until Friday that as his energy level decreased, his temperature would rise.  I had a tiny feeling that something was off for him on Thursday when I left for the day but wouldn't be able to confirm my suspicions until Friday when he spiked a fever.  The kids know how to handle lots of things, including when Ronan is sick. But I don't like to leave that in their hands.  They always assure me that they - and Ronan will be okay.  With their confidence in mind, I tiptoed out Thursday morning.  

I didn't get too far.  My front windshield needed to be cleared before I could drive away.  

The weather was like a yo-yo all of last week, and dipped back to winter temps.  While I heated up the car, I worked on defrosting the windshield.  The longer I waited for it to clear I realized that it wasn't really that frosty.  What needed to be cleared was on the inside.  It finally started to clear.  Readjusting the dials once more, I headed down the street.  It's usually all clear by the time I get to the first stop sign.  But that day, one large section on the passenger side stayed foggy longer no matter what I did.  I could see well through my side but couldn't see well from the other side of the windshield.  That had me slowing down and ultimately stopping.  Come on, I thought.  I finally have a few extra minutes to take care of something important, and I'm unexpectedly stopped in my tracks. 

I pulled over and waited on the side of the road.  No one was behind me, so I didn't feel the need to rush. 

One minute.

Two minutes.

Still, no one behind me. 

Almost cleared.

And, go. 

I rolled back on the road and approached the next stop sign.  Even though the windshield was completely cleared, I sat at the intersection longer than I needed to.  It's not because the road I was turning onto is on a curve, and I needed to make sure that no one was coming around the bend.  No one was coming.  I stopped longer because leaving the house that morning had me thinking back to when things weren't so complicated.  I wasn't expecting to have a rush of memories, but the last few minutes had me thinking back to the early 2000s.  I was prepared for Ronan when he arrived 22 years and a day ago.  I was ready to be his mommy and to provide everything his tiny body needed.  I was willing to go through the aches and pains of childbirth and also parenting.  I was overjoyed to watch our little family grow!  

Those were such blissful moments, and absolutely nothing back then prepared me for what lay ahead of us.  

That foggy window that morning kept me from seeing what was clearly in front of me.  Not being able to see kept me from going where I needed to go.  It sounds silly, but I compared it to how our expectations for Ronan’s life abruptly changed.  I didn't expect to need constant caregivers or to rearrange everyone’s schedules to accommodate him, like I do almost weekly.  I didn't expect to have to learn all that I have learned and had to handle, like being on hold for over five hours with the disability office last week to ask them one simple question.  I didn't expect to lose trust in people I used to revere, like some of Ronan's early medical providers who contributed to Ronan's ill health that led us down a darkened path.  

I know that expectations can change during many seasons of life, but all these years later, I'm sometimes still not prepared for what else is to come.  Take this year’s events.  Ronan's bounced back from a few terrible months of medical problems.  Even though I can see that things are much better for him now, the next round of unknowns keeps me feeling a tad uneasy.  

Once I got to work, I tackled the project and took care of other important tasks.  The kids kept Ronan happy and safe like they said they would when I was out of the house longer than usual.  Ronan didn't seem phased when I came home later.  While he may not be able to say, 'Mom!! I just love that the kids are home,' he shows us with his amazing smile that he was chuffed to bits.  

The smile, the squeals, the peals of laughter, and the shenanigans (happily, there are a few of those) helped push my doubts and my frustrations away.  

Like the fever that spiked and went away, those frustrations I feel are temporary.  I make sure of that.  Because to hold onto those and the suffering that comes with them will fog up my thoughts.  I don't entirely know what Ronan's future holds - for him or for us, but I do know that he's clearly made an impact.  On me, on my little family, and in our community here and beyond.  He's worth the little bit of worry and all of the extra help he needs.  I'm grateful for him nowand for every blissful moment we will hopefully witness in his future.  

Happy birthday, Ronan.  You are one of the greatest blessings in my life!

Cathy Jameson is a Contributing Editor for Age of Autism.

By Cathy Jameson

My kids decorated the house for Christmas the day after Thanksgiving.  When I was a little girl, we waited to decorate.  After Thanksgiving, the next season, a holy one, began with lighting the first candle of the Advent Wreath.  It wouldn’t be until after lighting the third candle that we would think to put up the Christmas decorations.  Our focus was on the waiting – of Christ’s birth and of life He would bring to the world.  When they were little, my kids’ excitement about Jesus’ birthday was as palpable, but they had me cave and break my own family’s tradition to start a new one.  They were desperate to decorate and for the right reasons.  They of course were thinking of Christmas gifts, but they also knew the reverence of two seasons we would be celebrating – the Advent season and the Christmas season.  Seeing how excited they were for both, we started putting up decorations the day after Thanksgiving.  So that the Christmas season is fully remembered, I was – and still am, adamant that our decorations stay up until Epiphany, a Catholic feast day that I look forward to.  

When all five kids were home for Thanksgiving this year, our decorating tradition continued.  My husband and I hardly had to do any of the work.  Once the kids saw that the boxes were out of the closet, the house was decked!  The tree was up, the stockings were hung with care, the mangers were placed in their usual spots with the Baby Jesus figurines tucked safely away until Christmas day, and the Advent Wreath was found.  Finding the Advent Wreath has become a special tradition as well.  For years, that box was put away first and at the bottom of one of our large decorating boxes.  Finding it – and hoping that all four candles were with it, became an annual hide and seek game.  Last year, we found the wreath but not the candles, so I improvised.  It was not my proudest moment.



I’ve had to improvise before and all the way back in 2009. 

Again, not one of my proudest moments. 

Neither was this one in 2020.



Sadly, I was not more organized in 2021 either.

Rabbit! Rabbit! (It's December 1st!)

By Cathy Jameson

Every few weeks I remember that I have another email address.  When I remember that, I’ll remember that I have not checked it in quite some time.  I prepare myself for an onslaught of spam messages when I finally use the right password to log in.  I use that email for store or restaurant rewards and for memberships I needed at one time but don’t use too much any longer.  One message I know I will have every single time I check that email address is from a photo service.  I’ll have at least 5 – 10 messages actually.  Free prints!  Free shipping!  Do you want to see your memories from 10 years ago? 

Some days I do; but other days I ignore those emails and those memories. 

When the kids were younger, I printed pictures.  We’d frame some, send some to extended family, and keep some to give to the kids when they were older.  Most images were taken from a digital camera, which I can look at any time I want to, but there’s something about holding a printed photo.  While cleaning out Ronan’s room over our Thanksgiving break, I found a few photos on his bookshelf.  Most were of the siblings, but one was of me and my husband.  It’s one of my favorite photos of us, taken at our favorite Mexican restaurant the day before my husband’s birthday and right before he left on a long trip.  The photos we’ve printed are the really good photos of really good memories.  This photo service, though, has some that are not great memories.  Instead of wanting to go in and delete them, I ignore them.  I do that because I know that if I start looking at one set of photos from all those years ago, I’ll want to look at all of them.  I have to be in the right mindset to do that, and this week, with as many things as we had going on, I didn’t need the distraction nor the emotional rabbit hole I knew I would end up falling into had I looked.

This week, several family members made the long trip to come see us.  Our house was full, loud, and fun!  The kids watched movies, they played the piano and their guitars, and sang together.  We talked, feasted, danced, and we laughed.  Ronan tolerated most of it, and I loved pretty much every second of it. 

When memories were shared this week, it was the very good memories. 

When family members were brought up, they were the family members we miss the most. 

When the cameras came out, we captured the very best side of us – the side that smiles the biggest with expressions that exude the most amount of joy. 

Other holidays and family gatherings have not had us smiling.  But this one was really one of the best ones.  It was so good that I almost forgot about the other side of life – the one that comes with struggles and with frowns.  We’ve inadvertently captured those on film and unknowingly scroll through them long after a frustrating event is over.  We didn’t have to deal with that this week, thankfully.  Even if we did, I think I could’ve put some of the sadder emotions on hold. 

With as many family members as we had with us for the last ten days, someone was always ready to help – either me or Ronan.  I wanted to be hostess with the mostest and got to do that.  I love when I can provide everything for our guests.  It can be a lot of work to provide for everyone, but it’s hard for me to accept help sometimes, even from the nicest people.  To be gracious is a gift.  And to have as many hands as we had wanting to help me was a blessing.  I’ll hope for more of those blessings next month when another holiday comes around.  It’s my absolute favorite one of the entire year.

Even though Ronan doesn’t show us that he understands what these holidays mean, like past holidays, he was aware that something big is going on.  He showed a little bit of interest, especially when new and amazing foods show up on the table but would soon go back to his normal activity.  That meant he was back in his room, listening to his music, watching his movies, and tolerating the loud, the happy, and the fun from a distance.  The longer he tolerated that and us, the longer we could enjoy ourselves.  Our guests understood and gave Ronan the space and time he needed.  He was thankful for that.  We were thankful, too.  We’ll hope for that again when we celebrate the most special day of the year. 

Cathy Jameson is a Contributing Editor for Age of Autism.

###

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Men too

By Cathy Jameson

Since starting a grad course on special education a few months ago, I cannot tell you how many times I read something from class that directly related to an event in my personal life or my professional life.  The course has been a challenge, but it’s been a blessing.  It’s been perfectly timed more times than not, too!  I love that and will be forever grateful for the knowledge I’ve gained and regained these last few months. 

Today’s coincidence happened after a difficult week of managing some issues both at home and at work.  I had control of some of them, but then I didn’t have control of others and had to let them go.  Juggling so many aspects of life – both mine, my son’s, and others at work takes time.  It takes a toll on me, too,and on those around me.  After getting through one of the frustrating issues that I could get through, I saw that a friend shared a link to a documentary about parents of children with special needs.  Wow, another coincidence.  

I had just opened the next chapter for class, which was all about parents and families of children with special needs.  The opening section included general information and statistics.  The next two sections mirrored what I know and experience as mom of a child with special needs.  Some of the parenting information is what parents across the world deal with. The further I read confirmed what many of us know to be true – levels of success and stress fluctuate for all parents, but those parents with children with special needs tend to handle quite a bit more.  

(Exceptional Learners:  Introduction to Special Education, 15th edition)

By Cathy Jameson

The world is a buzz right now with the news of the new administration’s cabinet members.  Big changes are coming at the Secretary level and the Director level.  The biggest news for our community seems to be of Robert F. Kennedy’s nomination as Secretary of the Department of Health and Human Services.  A shakedown is coming, and so many people shared how excited they were when they heard that news late last week.

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Kennedy is someone who listened.  He researched what parents were telling him.  Not only that, but he hit the road with us – and not just once.  He’s been with us at several events for several years now. 

Green Our Vaccines Rally, Washington, D. C. - 2008                          

Autism One Conference, Chicago - , and that’s our Kim Rossi in the picture with RFK, Jr.!

Trace Amounts, Washington, D. C. - 2015 https://www.youtube.com/watch?v=XxLjtLPNxP4 

V is for Vaccine, California - 2019

Long before this nomination, RFK, Jr. has been a voice for us and for our children. He’s promised to make necessary changes in the District and across the country.  His hope and efforts mirror what President-elect Trump has asked him to do:

“He wants the corruption and the conflicts out of the regulatory agencies. He wants to return the agencies to the gold standard, empirically-based, evidence-based, science and medicine that they were once famous for. And he wants to end the chronic disease epidemic with measurable impacts on a diminishment of chronic disease within two years.”

Many would love to see that happen, too, including my family. 

The first memory I have of Robert F. Kennedy, Jr. working alongside parents in the autism community goes back to the Green Our Vaccines Rally in 2008.  Before that event, he’d written a lengthy article that was published in print in Rolling Stone Magazine and in Salon Magazine online in 2005.  At the end of the article, he shares:

I devoted time to study this issue because I believe that this is a moral crisis that must

be addressed. If, as the evidence suggests, our public-health authorities knowingly

allowed the pharmaceutical industry to poison an entire generation of American

children, their actions arguably constitute one of the biggest scandals in the annals of

American medicine.

Salon took down the entire article six years later, reposted parts of it in 2022, but you can still find it on the web. The pro-vaccine crowd were quite vocal in their opinion of Kennedy back then and what he stood for.  He’s ready to take them on again as well as the new naysayers who would rather he be silent.  I don’t think being silent is possible for RFK, Jr.

I pray that Robert F. Kennedy continues to be a voice for our children for as long as he has his.  Having someone in the position he’ll soon be in has been a long time coming. 

Cathy Jameson is a Contributing Editor for Age of Autism.

###

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By Cathy Jameson

I’m nearing the end of a grad course that I am taking, and that means catching up on lots of reading over the weekends.  I had extra time last week to get ahead on two papers that are due at the end of this month.  For the first paper, I had to compare and contrast two disabilities and include an advocacy group’s information.  I wrote about Williams Syndrome, Regressive Autism, and included details about The Autism Community in Action. The second paper topic was disability in the media.  Since I’ve written about music and sign language before, I thought I’d edit my latest assignment a tad and share it as today’s post  

Enjoy!

When I saw the prompt for this paper, I knew immediately that I was going to write about a video that I saw back in the mid2010s.  The video, which featured a young woman using American Sign Language (ASL), was one of the most powerful videos I had ever seen.  So moved and impressed by her and her ability, I remember sharing the video with family and close friends.  For years, we had been using ASL with my son who was non-verbal.  For years, I also noted that music moved him.  From overwhelmingly peaceful pieces like Mozart’s Concerto 21 to incredibly profound songs, like Nine Inch Nails’ “Every Day Is Exactly the Same”, I had been in awe of his music choices.  It took me awhile to find the exact video I wanted to write about for this assignment, (it has been taken down from several sites by 8 Mile Productions for copyright infringement) but when I found it, the emotions I remembered from almost a decade ago came rushing back.  So much so, I shared it again with family and close friends.  

Accompanying stories featured Shelby Mitchusson and her interpretation of Eminem’s “Lose Yourself” with sign language. With how unique the story was, many outlets shared it.  Mitchusson’s reason for sharing the video, besides that it was created for an interview to be an interpreter, was that she had “…a deep love for interpreting music…”  The original articles of the sensational story were not terribly long.  Ones I searched for today were even shorter, but the video fills in the gaps and shows just how powerful the  interpretation of a song can be.  

Mitchusson uses a common form of communication that students who are deaf or hard of hearing and students who have been diagnosed with non-verbal autism may also use.  While she is not the person with the disability, Mitchusson’s ability to sign gives a chance to those who cannot hear the music to see the music.  It allows them to watch the lyrics, to realize the tone, and to view the depths of emotion come to life visually.  

The reporter picked up the story of Mitchusson’s ASL performance from other sources when the video gained popularity.  An audition tape for a job with concert venue Autism City Limits, many who saw it were completely in awe of it. In searching for more news from this timeframe, I saw that several outlets shared similar information.  All reported that Mitchusson’s talent was undeniable, and several included that she did indeed secure the job.  

While researching for this paper, I learned that the American Disabilities Act requires that interpreters be available at venues if concert goers request that.  Quite a rare job, it could help Mitchusson, and other interpreters, maintain a consistent presence at large entertainment events.  Not only does that position help the fan who may have hearing differences, but it reminds the industry, and the public, that audiences with unique needs and disabilities can be served.  

Social media and the internet helped Shelby Mitchusson’s story reach many audiences across all abilities back in 2015.  From local headlines to international headlines, Mitchusson brought awareness and appreciation to scores of readers, listeners, and followers.  The news sites that picked up her story were not just disability-related websites either.  The message shared was a universal one, and those with disabilities, and those without, were impressed with her talent.  

When the story and video went viral, disability groups commented on how well Mitchusson signed the lyrics and how she perfectly shared the emotion of Eminem’s song.  She shared music with those who could not hear but who very well could feel it.  Eminem is known for deep, raw commentary in his rap songs, and Mitchusson successfully conveyed that in her video.  Looking at her other interpretations,  Mitchusson delivers what artists wish to evoke to their fans and followers – a connection.  

Just like the first time I discovered it, I’ve rewatched the “Lose Yourself” video several times over the last few weeks.  Each time I do, I’m reminded of one of my favorite quotes.  “Where words fail, music speaks.”  In Shelby’s case, the music she is interpreting truly speaks volumes.

Cathy Jameson is a Contributing Editor for Age of Autism.

###

Some of us were pushed. Some jump. It's really hard for most of us to imagine signing up for a vaccine clinical trial. But Brianne Dressen, did. And this is her story, written by Caroline Pover and new from Skyhorse Publishing, Worth A Shot.

By Cathy Jameson

…it’s a testament to you…

I don’t normally invite mainstream medical providers into my home, but I welcomed the nurse in with open arms.  She’s fairly new to Ronan’s team of providers. Last time she visited, she quickly recognized that we’re not a typical family and that we don’t accept things that others typically do – like getting a flu shot.  Not only did this nurse remember that; she also respected it.

We’ve fought hard for Ronan, and we don’t want to slide backwards.  The fight continued just a few weeks ago.  Thankfully, other of Ronan’s providers have been quick to advocate for him.  In doing so, they helped cut some thick, red tape.  Testing is expensive, and insurance companies are rash and say no to those kinds of tests.  Good doctors who spend time with their patients and their families refuse to let no answers be the final answer.  Good doctors, like Ronan’s, fight for their patients.  Testing was approved and done. Since it’s so unique, it’s understandable that it’s taken longer to get results.  While we wait for those, we review with others, like the nurse who came to our house.  Checking with us every few months, she monitors several services that are provided to him.

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Daily living skills

Medication needs

Living needs

Behavioral needs

A young man like Ronan has many needs from learning how to perform very simple daily skills to us managing his very complex medical issues.  With all of it, my husband and I continue to step in to make sure Ronan is taken care of.  The nurse who came by ensures the services needed are maintained.  I used to not like having to reveal all the things to all the people we’d encounter.  Less is more!  But my child needs more than his typical peers do, we do reveal a little bit more than sometimes we’re comfortable.  The medical people are never squeamish, and most have been incredibly respectful of milestones Ronan is still working on. They understand the big picture and that it’s taken small baby steps for us to get to where Ronan is today.  

He's not closer to independence like we’d hoped and prayed for when he was younger.  But he is worth every effort, including the efforts made by the young nurse who came to our house to work on his case.  “I’ll keep in his file that you still require the care of attendants to help oversee his daily activities.  I’ll include the latest neurological issues he’s dealing with.  Since those have worsened, he won’t be in danger of moving down the scale.  I’ll update that he’s still not able to accomplish those bathroom skills also that we’d hoped he would have achieved by now.”  

Not that I’m rooting for failure, but I thanked her for knowing that worse is better for him in this instance.  The case she was updating provides benefits for us that would be out of reach.  Finding the care, the supports, and the time this program offers us has been a lifesaver.  Those who work with us personallyhave been nothing but helpful.  Other groups don’t always remember the human side of special needs care, but this group does.  So, I didn’t waiver when asked to sign the yearly document.  It’s time sensitive so the nurse promised to deliver it without delay.  She’d shared with me that she, too, has a family member who requires care beyond her family’s abilities.  The frustrations she’s recently felt as she searched for available benefits are ones I have felt in the past.  Sharing her story gave us a connection and one that I very much appreciated.  When the person fighting for you is dealing with similar situations, the bond created can be very strong.    

As we wrapped up our visit, I shared a little bit about where Ronan’s siblings were since the last time the nurse visited.  She asked about their latest accomplishments and was impressed that they still willingly pitch in whenever they’re around.  “It sounds like you have such a lovely family,” she said.  Knowing that they are still drawn to being home, she added, “That’s a testament to you and your husband…that gives me hope.”  It was my turn to smile.  

My family.  

Those sibling.  

They don’t waiver, and that, too, gives me hope.

Cathy Jameson is a Contributing Editor for Age of Autism.

Some of us were pushed. Some jump. It's really hard for most of us to imagine signing up for a vaccine clinical trial. But Brianne Dressen, did. And this is her story, written by Caroline Pover and new from Skyhorse Publishing, Worth A Shot.

###

Preschool teacher Brianne Dressen wanted to help end COVID. What better way than to participate in a clinical trial for the vaccine? But something went terribly, terribly wrong. 
 
Worth a Shot? by Caroline Pover tells the true story of what happened to Brianne’s body, mind, and spirit. 
 
This book chronicles Brianne’s journey as she discovers the intricate web of systemic failures that affect the health of millions worldwide, and unwittingly becomes a global advocate for a cause that nobody wants to believe exists.

The message was quick but intriguing – she was reaching out to see if I might be interested in her latest autism adventure – to get thousands of PubMed articles, about comorbidities that occur with autism and how to treat them, on an AI platform for clinicians and parents to use as a reference. Those wishing to support the cause are gathering in a few weekends at an event in Tysons Corner, just outside of Washington, D.C. Organized by Leadership & Innovation Foundation,  tickets for the event can be found at this link.  

By Cathy Jameson

Right after I got a new phone, I set it on the counter with my old phone to transfer data.  That would take a bit, so I got some things done in another room.  I was hoping to get a little discount when I upgraded, but I was a little disappointed when I couldn’t exchange it.   I’d have to pay full price for a replacement. That old phone was my lifeline for a long time.  I used up every bit of storage in it.  Old texts, old photos, old messages, and old notes.  It held a lot of history and was well worth the cost.  I was hoping the new phone would be the same.  

When the new phone was updated, I couldn’t believe how quickly the apps were responding.  What a difference!  While reading through several notifications and messages that came in while it sat on my counter, I saw a number I didn’t recognize.  I could see the first two lines of the message and could tell that whoever sent it seemed to know me.  I didn’t open it right away but did a quick search on my old phone for the number.  Nothing came up.  I typed the number into my email search.  Nothing.  I looked online also.  No connections.  I’m not one to open messages from random people, but this one didn’t give me an uneasy feeling, so I opened it.    

Ohhhh!  It’s from Casandra.  She’s amazing!  

She really is.  

The message was quick but intriguing – she was reaching out to see if I might be interested in her latest autism adventure – to get thousands of PubMed articles, about comorbidities that occur with autism and how to treat them, on an AI platform for clinicians and parents to use as a reference.  She also shared that Dr. Rossignol was part of the efforts.  

Autism Knowledge Gateway,  which launched at a recent TACA  conference, is a dynamic resource in development. It aims to provide clinicians, parents, and educators with access to a robust and easily searchable repository of over 40,000 peer-reviewed research papers, comprehensive information on available programs and resources dedicated to supporting ASD families, and a collaborative chat room within the Gateway to facilitate in-depth private discussions of case studies and current research among clinicians, as well as supporting open chat rooms for more collaborative discussion.

Those wishing to support the cause are gathering in a few weekends at an event in Tysons Corner, just outside of Washington, D.C. Organized by Leadership & Innovation Foundation,  tickets for the event can be found at this link.  Donations can be made at that link as well. 

I’ve seen our community thrive when families help one another, which is why I’m sharing this information today.  Casandra’s sons have similar health issues as my son does.  She’s moved mountains for them.  While we haven’t seen each other in quite some time, I’m so grateful that she checked in with me and shared information about her latest adventure and about the groups involved.  I hope that many families will be blessed by their efforts.  

Cathy Jameson is a Contributing Editor for Age of Autism.

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Denial: How Refusing to Face the Facts about Our Autism Epidemic Hurts Children, Families, and Our Future

by Mark Blaxill and Dan Olmsted | Jul 25, 2017

By Cathy Jameson

When I started teaching back in the 1990s, I was so excited to have my own classroom.  I couldn’t wait to teach young children!  Always envisioning working with the early childhood and the younger elementary grades, I felt right at home in 2^nd grade and 4^thgrade.  Third grade was fun to teach, as was preschool, but there’s just something about 2^nd and 4^th grade that really appealed to me. 

I taught at small, private schools for the most part and usually had typically developing children on my roster.  I can recall only two students with documented learning issues.  One child had testing done prior to being in my classroom, and the other was in the process of testing while I was her teacher.  Both eventually ended up with accommodations, but it was so close to the end of our school year together that I don’t recall how much I personally had to do.  I also can’t remember who helped these students, but someone on our small team of faculty members worked with the students in an official capacity. 

While I don’t remember too much of their education plans, I do remember saying how much I appreciated the other people working with them.  When someone asked me if I’d ever want to work in special ed, I clearly remember saying, “No, that’s not for me.  I am so glad that God made special education teachers!  They are really amazing.” 

And most are.  

Ronan had a few amazing teachers and paraprofessionals during his special educational career.  We still think of them and are very thankful for the years they spent with Ronan and us.  During the good years, I remember sharing my thanks several times, “I am so glad that God made you special education teachers!”

When I got to tiptoe back into the education field a few years ago, I loved being back in an general education environment with elementary-aged students.  Blessed to work with both 2^nd grade students and later 4^th grade students again, I felt like I was on the top of the world.

I have a different position now.  Part of my new role keeps me looking closer at early childhood development.  For my job, and because it’s a topic I am drawn to, I frequently read about typical milestones, about screenings and assessments for young students, and about education in general.  I have spent hours reading about current educational trends and have pondered how today’s educators can successfully implement high quality teaching strategies.  The more I read, the more I could see that general education has taken a hit.  It definitely changed after covid – and not for the better. 

It was time that I do something more than just read and share the information with friends and colleagues.  Gen ed, in some places, was starting to sound more like special ed with how many students were dealing with learning struggles.  Wanting to understand why they were struggling, and also gain insight on how to help the families I work with, I applied for a grant to take a graduate class all about special education.  The thought of taking a course while Ronan is going through his recent medical issues was daunting.  My time is not my own, even more so with his needs.  But I applied anyway.  Within a few weeks of applying, I learned that I could register for the class.  I was back in school again…this time for me!  

I have actually enjoyed the intensity of the course and the knowledge I’m gaining from it.  It’s been five weeks, and it has been eye opening.  The best part is that all of the effort that I normally put into the mountains of reading I do is now coming back with a grade (a solid A so far!).  The only frustrating part was not from the workload but was when I saw that the textbook brought Wakefield into the conversation about autism.  The authors didn’t need to, but they dedicated a page to that old “controversy” anyway.  

Autism is just one topic that on the syllabus.  I’m learning about severe disabilities, intellectual disabilities, and quite a few other disabilities.  The course is heavy with assignments, including reflection papers, quizzes, projects, readings, and optional readings that are geared toward the settings that I and the other educators are familiar with.  In a few days, we have the option to participate in a call with the professor and the group that gifted the grants.  They’d like to know what we think of the class so far and what are plans for the future are – will we take other classes?  or complete the degree?  or pursue special education teacher licensing? 

They’d like a decision, but it’s too soon to tell. 

With two of my kids in college, I don’t know if adding another tuition bill would be wise for us.  I took this chance to tiptoe back into my own education to see if I could handle the rigors of a grad-level course while juggling all the things and all the people in my life.  I’m juggling things well right now, so if another grant found its way to me, I know I would jump at the chance to continue my own education.  Why would I not want to take advantage of putting the reading and researching I’m already doing into something formal like a degree or a certificate? 

As exciting as that is, that’s a thought for another day.  I’ve got to get back to finishing a project and a reflection paper.  Easily, I could bring personal experience in and write about autism and mitochondrial disease for my project, but I’m exploring another topic in special education.  With 8 more weeks of classes, I know I’ll get to explore, read, and research quite a bit more.  I’ve hit a new level of exhaustion with all of this studying I’ve been doing lately, but I really can’t wait to learn some more.  

Cathy Jameson is a Contributing Editor for Age of Autism.

Your Special Education Rights: What Your District Isn't Telling You.

By Jennifer Laviano and Julie Swanson

The definitive guide for parents of children with disabilities is out.
This book is authored by two special education experts and draws on decades of experience from the front lines of special education advocacy.

The authors, Jennifer Laviano and Julie Swanson, detail a strong, practical, and results oriented perspective that helps parents cut through the fog of special education to get the services their children deserve.

"Our bottom line is parents are often ineffective at advocating for their child because they don't know their rights," said Jennifer Laviano, co-author and special education attorney. "We see it time and again: The child doesn't get what he or she needs because the parents don't know what they don't know.

Today's post goes back fourteen years, to 2012.  Do you have any idea how long some of us have been caring 24/7/365 at breakneck speed for our children? Some of our children are approaching 30. We do it with a partner. We do it alone. WE DO IT every day. We never do it alone, as long as Age of Autism is here.

By Cathy Jameson

This old post of mine has been on my mind a lot lately.  That's because lately, we have a different window of time where Ronan is doing okay.  He's doing okay for a number of minutes.  Then, he starts to not do okay.  I can get a lot of things done from minute 1 to 66, especially if I've planned out my morning the night before.  But 66 minutes isn't enough time to do everything, especially when the next 84 minutes, or longer, is sitting seizure watch. 

In those next 84 minutes, I can't do much of anything.  

I can worry a lot, though.  

And most days, I do. 

Parenting a child with complex medical issues is challenging.  When I think back to when I wrote this post, I faced different challenges.  Back then, besides the medical issues, we dealt with a lot more behavioral issues.  Those have subsided over the years.  What hasn't changed is my devotion to my son.  I pray that I can always push through every challenge he and I face.  I pray that I can remain not only physically strong for him but also mentally and emotionally strong as well.  

How about you?  What are your current challenges?  And, how long can you set your timer?  

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March, 2012
By Cathy Jameson

A quarter of a room vacuumed.  Half a lunch downed.  A portion of laundry sorted, washed or folded (but never completely put away).  A full head swivel.  In those spurts of activity, that’s what I can get done before I have to look up for Ronan.  Only when I can see or hear him do I breathe a sigh of relief. He’s staying with his activity (for now).  He’s present.  Accounted for.  Good.  He’s safe.  I carry on.  My inner clock timer resets. 

Three minutes. 

This is how long I have in between where I left Ronan and what I am attempting to do.  Shower?  Forget it.  Gourmet meal?  Never!  Baking?  You must be kidding.  I have no time to commit.  What other housewives might likely take for granted or even resent I blaze through.  It’s nearly impossible to do one thing from start to finish while I keep one ear listening for Ronan and one eyeball on his constant look out.  But, that’s how much time I have.  Three minutes. 

Repeat. 

***

When LJ Goes wrote her powerful piece about what two minutes in the life of a child with autism looks like I thought, “Poor LJ!  Two minutes?!  How awful!”  In two minutes her life goes from normal to unbelievably wrong.  I walked around my house the week after her post went viral thinking about those two minutes.  I thought about LJ running franticly  through her own house trying to stop the madness.  I thought about that child of hers how he screams, literally screaming in pain trying to figure out how to control a body that is riddled with toxins.  In two minutes her child spiraled to a place no parent should ever have to witness.  How I wish it were different. 

I’ve been able to think about LJ’s two minutes for months now.  Her article haunted me for days and days, and obviously for a long time as I’m just now sitting down ready to reflect on and write about it.  Since reading it I ended up timing how long my son Ronan was willing, and later able to sit for an activity.  It’s not very long at all.  Once he’s done, he’s done.  Redirecting is difficult.  Starting something new takes some cajoling.  Distractions fill his gaze.  Frustration at not being able to complete simple things hangs over him.  Three minutes isn’t very long, but for Ronan sometimes his three minutes is long enough. Not only does his time limit stop him, it seriously hampers what I can and cannot do.  It also makes me prioritize what I want to do or don’t want to get done. 

Something had been bugging me since last fall.  I added it to my “Someday Get It Done” list--those are big projects but have incredibly low priority.  On that list was rake part of the yard that had been neglected around the same time I had surgery last November.  Feeling strong enough to do yard work a few weeks ago had me bump Rake Leaves over to my regular “To Do” list. 

When we hit 70 degrees over a weekend I thought, Perfect!  I’d been aching to be outside in the sunshine.  Plus those unsightly leaves needed cleaning up.  A wind storm had brought many down and our neighbors dumped a few over on our side of the property line.  I had a mess to deal with.  My husband had already cleared a majority of the yard but the portion that was left bugged me.  Not wanting to take time away from Ronan or other family events we’d planned since November, the leaves were forgotten.  I would usually have to wait until someone else could sit and be with Ronan if I wanted to spend the amount of time it would take to bag the leaves anyway.   Remember his three minutes?  Three minutes indoors or out.  Three minutes.  Tops.  Plus, he has a habit of bolting when he’s outside. 

But, the warm weather was enticing.  I decided I was going outside no matter what.  Ronan would have to accompany me because my husband had to work over the weekend.  I thought it would also be a good time to start shaping Ronan’s outside routine.  With spring around the corner, it was time to practice outside safety again.  I hadn’t planned anything else on that sunshiny day and wanted to take advantage of the warm air, my better energy level and Ronan’s cooperation.  He’d been in a super mood that morning.  No meltdowns, great communication and even better, he had a tad longer time-on-task attention span.  My other kids were out gallivanting through the neighborhood with their friends while my husband was at work.  Half my responsibilities were taken care of so it was just Ronan and me.   We’d go outside together.  Surely I could get some yard work done, right?

I put on some old jeans, got Ronan’s necessaries (iPad, cup of almond milk, a hat he likes to wear) and we went out to the back yard.  I set Ronan up on the deck—close enough for me to see his movement and also to hear the iPad apps to know he hasn’t left the deck area. 

Rake, rake, glance up at Ronan.  Rake, rake, shove a handful of leaves into a bag.  Rake, rake…“Ronan? Ronan, wait!  I’ll be right there.”  I ran over to the deck as he signed “listen yes” while flashing me a big smile.  He’d somehow turned the sound on the iPad down and was ready to travel down the stairs and across the yard to me.   I meet him half-way and resituated him back on the deck, “Here you go, Buddy.”  Back to the pile of leaves I rushed knowing that inner timer was ticking.  I only had two minutes left before resetting…more leaves, more raking, glance up, smile at Ronan, reassure him he’s doing great, “Good job, Rone!”  Fill a bag, maybe even two.  Maybe not.  

As I raked and stole frequent glances toward Ronan I wondered was it worth it.  Is raking leaves really something I wanted or needed to do?  That day, yes. I wanted to prove that I could do something that other people do.  I wanted to check off a list I rarely get to.  I wanted to soak in the rays of that sun.  I wanted to sweat outside again.  I wanted Ronan to tiptoe back into the outside world he loves to be in but cannot navigate on his own.  I wanted both of us to enjoy the feeling warm weather brings—freedom.  Freedom from the walls that feel like they are caving in during the long winter months.  I wanted and got all of those moments. 

***

My three minutes seem like the opposite of LJ’s two minutes.  I have 60 seconds more to attempt to do something while LJ might wish for 60 seconds less of the struggle she has.  I’m quickly getting things done like cleaning, assisting one of my typical children with homework or creatively planning how to make the next meal hoping it’s somewhat edible by the time it’s served.  LJ is in full-throttle defusing a child who didn’t deserve what was done to his body.  Her inner timer must pass out after an episode.  Mine, as long as Ronan hasn’t wandered off into danger, quietly resets itself and I restart a household chore, a task at hand and even my attitude.  Three minutes to scarf down a meal before having to either get up to find Ronan, to send one of his siblings to check on him, or to hope he comes back through the room he just left so I can lay eyes on him again.  

“Whew! He’s okay.  Now, quickly.  What’s next?”

It was hard to read LJ’s post, and then to reread it several times over the last few months.  I felt like I had to reread it.  I wanted to hear her words and imagine what must go on in the mind of another parent.  Who better to learn from than one of the greats?  LJ and her husband are never going to stop trying to help Noah.  They’re going to kick this autism out of their house because it has no place in their child’s life.  It’s reeked major havoc and has wasted too much of their child’s time.   Their commitment feeds my own and reminds me that I am not alone in what many days feels like an endless battle.

I might only have one more minute than LJ, but it doesn’t matter how much time we have or don’t have.  After taking care of our children we’re using up every second of every day to read, write and share what we have learned.  We’re doing this because the autism clock is ticking, and sadly it doesn’t slow down.  Time is ticking against our kids’ development.  It’s ticking closer to a despair that sometimes hangs over our heads.  The longer we feel those minutes ticking away, the louder LJ and I both seem to get. 

We’re reaching out to someone new with our tired, worn-out, awful stories.  We’re forced to talk about what can happen in two very short minutes and why some of us are only able to work in three-minute intervals.  We’re working overtime because more children are falling ill.  Vaccine injury hasn’t gone away.  Autism is becoming an everyday word and diagnosis.  New people are added to warrior parent status.  We have to harp on this topic until every disaster is cleaned up, until attention spans can grow longer, until children’s health and development are valued.  Too much has already been taken from us, from Noah, from Ronan and from so many children.   One day, and I wish it was someday soon, that has to stop.

I’d love for my inner timer to not have to reset.  I’d love to have the worry, stress and moments of despair be whisked away.  So much has been taken away including our precious time.  Time is one thing that cannot be stopped or exchanged.  How I’d love to go back in time to change a few decisions.  Two minutes to change my mind about a medical decision.  Three minutes to feel confident I did the right thing.  Time.  It feels like it’s slipping through my hands.  How I wish I could ask for some of it back

Cathy Jameson is a Contributing Editor for Age of Autism.

By Cathy Jameson

I had the day off on Monday but ended up going into work to drop something off and to pick something up.  I was going to run some important errands afterward, so I didn’t stick around too long.  These are the errands that can only be done during work hours.  Never having a chance to get to those, I was grateful for the time off to finally get to them.  As I drove into work, I realized I had forgotten to make a copy of the paperwork I needed to mail on my errand.  So much has been going on at home that that simple step got overlooked.  I learned the hard way years ago to make a copy of documents going to government agencies.  It’s always their word against yours unless you can prove it with documentation.

So, while I was in the building, I made copies of that official document that I was finally about to mail.

Four copies.

Done in the open.

But made with guilt.

As I left and started down the road to the post office, the secretary texted me, “Cathy, can you call me when you get a minute?”

OH NO!!  SHE KNOWS!  AND MY BOSS KNOWS, TOO!

We have a group text, the three of us, and I thought surely I was doomed.

Below is Cathy Wrote Best of." She has the weekend off.  Special Education has gotten more complicated than ever, as school districts deal with the onslaught of students needing help. If you have a story to share, please comment. 

As a sidenote, one of the best books you'll NEVER hear about from your district is Skyhorse Publishing's Your Special Education Rights, written by SpEd lawyer Jen Laviano and Advocate Julie Swanson. It offers an "inside baseball" look at what districts will do to protect their budgets and behinds, even at the expense of your child's legal rights.

By Cathy Jameson

IEP.  That acronym can conjure up one of many emotions.  From frustration to relief, what it takes to create an Individual Education Plan can be one of the biggest stressors that special needs parents face.

Susan was one of those parents.  She was becoming more and more nervous about her daughter Anna.  Knowing something just wasn’t right, Susan’s suspicions were confirmed mid-way through Anna’s kindergarten year.  Watching her bloom much more slowly than her peers, she wondered if what she was seeing were tell tale signs of a developmental delay or more specifically, a learning disorder.  Fearing that Anna was going to need a great deal of help to catch up, Susan asked the kindergarten teacher for advice and to set up a parent conference. 

Susan and the kindergarten teacher, Miss Taylor, compared notes as to what each was seeing.  Susan shared how Anna had started to become withdrawn and temperamental once she came home from class.  Wondering if Anna was trying to keep it together at school but lost it at home, Susan suspected her school struggles were the cause of the change in behavior.  Homework was becoming increasingly difficult, bedtime was emotional, and both Susan and her husband were worried that Anna wasn’t grasping the academic demands in the classroom. 

Susan was hoping Miss Taylor could help pinpoint what Anna’s delays were and address them in the classroom.  She liked the school and the staff and wanted to work with them to get her daughter the skills she needed to be successful in the future.  Thankfully, the school could help, and in fact, were required to do so especially if what Anna was dealing were issues that a more specialized program could focus on.  

Anna’s teacher, Miss Taylor, was in agreement that she, too, was beginning to observe Anna slipping behind.  Together, Susan and Miss Taylor worked together to start the evaluation process. Miss Taylor assured Susan that a screening would begin right away.  During this time, Miss Taylor and other district staff were assembled to review testing tools and what they’d need to evaluate Anna.  After Susan was informed of the tests chosen and agreed to them, Anna’s testing began.  A determination meeting, one of the first formal gatherings of the IEP process, was scheduled for 3 week’s time.  Susan put the date on her calendar and stayed in touch with Miss Taylor until the meeting.

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When a parent or teacher suspects that their child has a problem or concern, either the parent or the teacher can request that a child be evaluated.  Once the concern has been submitted to a representative of the school (also known as the local education agency, or LEA) a screening must begin.  Depending on the state guidelines, a school district will have to complete the testing within a certain timeframe.  

If the evaluations come back that determine a child does have a disability per IDEA guidelines, the need for special education will be discussed with the parents and with an IEP team.  IDEA, the Individuals with Disabilities Education Act, enacted in 2004, is: “…a law ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities.

Infants and toddlers with disabilities (birth-2) and their families receive early intervention services under IDEA Part C. Children and youth (ages 3-21) receive special education and related services under IDEA Part B.”

This means that public schools provide free-appropriate public education (FAPE) for a child who needs special education and related services.  The child’s parents, who will not incur any costs when the child is enrolled in those services, take several more steps with the school to create a specific plan for the child.  Those services will be outlined in the IEP. 

IEPs are legal documents that dictate a child’s educational plan.  If done well, the IEP includes input from the entire IEP team who service the child’s needs.  While it takes a village to raise a child, it takes a team to create, implement and track the goals and outcomes of a child’s IEP. 

Typically, the team is made up of the parents, the general education teacher, the special education teacher, a school psychologist, various therapists (if your child requires related services such as physical therapy, speech therapy and occupational therapy), your child (if you wish them to be there, or if they are able to contribute to their education plan), and of course, at least one administrative representative from your school district, which is usually the principal or vice principal of your child’s school.  As time goes on, and depending on how the child’s educational needs, other people may be added. 

A child, after being evaluated, can be found eligible for special education and related services in the following disability categories:

Autism

Deafness

Deaf-blindness

Developmental delay

Emotional disturbance

Hearing impairment

Intellectual disability

Multiple disabilities

Orthopedic impairment

Other health impairment

Specific learning disability

Traumatic brain injury

Visual impairment including blindness

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A great deal can be done to support a child with a disability.  It takes careful consideration and a well-thought out educational plan to get that child the support they need.  That’s what Susan wanted for Anna.  Because she was struggling in specific areas, during the referral process Anna underwent several tests:  a psychological evaluation, an educational evaluation, plus a speech and language evaluation as well as a fine motor delay evaluation.  It took several days to complete the testing including tallying the results.  Those would go in a formal report and be presented to Anna’s parents and discussed at the determination meeting.  Throughout the testing process, Susan was kept informed of which tests Anna’s underwent and was eager to know the results. 

Now that all of Anna’s testing was complete, the next step was to wait to hear the schools’ recommendations.  Susan had just received the invitation to meet from the district.  She was available for the day and time they suggested and started going over in her mind what she wanted to talk about with the team.

Susan wanted to be an active member on the IEP team.  She had already made a list of Anna’s strengths and weaknesses.  She had also started to do a little bit of reading and asked another mom, who had a child on the spectrum and was two years older than Anna, what she knew about their district’s special ed program.  From that conversation, Susan learned she can and should play a very active role in the IEP process.  She started thinking about what goals she wanted for Anna—goals not just to get through first or second grade, but beyond when Anna would be done with school and hopefully on her own.  She wanted Anna’s school experience to be positive where she’d learn, grow and build life-long skills to be an active member of society. 

Suspecting that it was going to take a few more professionally-trained people and a bit of therapy to get Anna where she should be academically, Susan asked for a copy of the official reports everyone had conducted to be sent to her before the IEP meeting was scheduled.  This way she wouldn’t be thumbing through the reports trying to read them while the educational experts were presenting them; she would instead have had time to read and digest them before having to talk about them. 

Susan also requested that, if the school had created proposed goals for Anna from all of the testing they did, she be given a copy of those as well.  Knowing that making goals would be discussed if Anna were made eligible, she made sure to ask for them at least 5 days before the meeting to be able to decipher the language and look up anything that she may not completely understand. 

On the day of the IEP meeting, Susan sat at the head of the conference room table and waited for the rest of the team to be settled in their seats.  Each person went around the table introducing themselves.  Susan had already met most of the group and was ready to find out what they were going to tell her.  The vice principal, acting as the LEA representative, welcomed everyone while the speech therapist prepared to take the official meeting notes.  Susan, also planning on taking notes, asked that the meeting be recorded on her hand-held audio recorder because her husband was unable to attend the meeting. The district LEA agreed to it, and the meeting started. 

After each of the team members who tested Anna had a chance to report on their findings, it was determined that Anna did have significant developmental delays and that they did indeed warrant special education.  Since she was also behind with both speech and language and fine motor skills, Anna was also found eligible to receive related services (speech and occupational therapy).  Not completely surprised, but now full of even more questions, Susan discovered she would actually be invited to another IEP meeting, a meeting immediately following this determination meeting.  Before it was to begin though, Susan was asked to sign the determination paperwork allowing the school to start the next step:  creating Anna’s individualized education plan. 

By signing the document, Susan agreed that Anna was eligible for services.  Susan was nervous, but remained hopeful that the school would continue to guide her in the process to get Anna the appropriate education she needed.  She was ready to continue the process, so Susan signed the invitation to attend the next IEP meeting, which was to start in minutes, while still sitting at the table.

The meeting, which would cover how the school district would provide the services and supports Anna needed, began right away.  Since creating the actual plan that would be unique to Anna’s needs and would also describe the specific services the school would offer, the team had to brainstorm ideas, discuss strategies and work together.  They got started right away.

---

Once the evaluation is complete, special education determination decided and signatures acquired, another IEP meeting will be scheduled.  Many topics will be discussed at this and all future IEP meetings.  Educational, therapeutic and social skills goals, among others, have to be created.  Duration of and placement for a child’s specific services must also be addressed.  All involved in the plan contribute a great deal of information to an IEP meeting. 

As meetings can be long, parents should be prepared to spend half a morning, or afternoon depending on when they are scheduled, in discussion.  Some parents will bring snacks when an IEP is scheduled.  Others don’t as they keep a more managerial-style approach to the table.  They instead stay focused on the business at hand.  They see themselves as lead manager of their child’s education collaborating with school experts to create an appropriate educational plan designed to carry their child through their academic career.  Knowing what to bring to a meeting, how to present oneself and how and why parents should document everything that is shared with them, will take practice.  So will knowing the key points frequently discussed at IEP meetings.  Those include: 

-That the child is eligible to receive special education and related services

-That FAPE must be provided

-That accessing the General Education has been considered

-That the Least Restrictive Environment (LRE) has been taken into account

-That potential accommodation and modifications are reviewed

-That appropriate placement—either through the public school or in a private school setting--is discussed

-That goals are always measurable, objective (not subjective) and use the child’s strengths to improve their weaknesses

-That inclusion, whenever possible (and not just during specials or recess), is the an option so that every special education student can be educated alongside their typical peers

Throughout the process, as daunting as it might feel, parents will be asked for their input.  From identifying the initial concerns to getting services started, and in the future changed as a child reaches their goals, parents will also be asked to give their consent.  So that a parent can be fully informed, requesting documents the school will share at meetings is important to get prior to the meeting.  Reviewing helpful websites, reading current trends in special education law and asking question until all are answered to the parent’s desire can help one successfully navigate through the system. 

---

Because of the information a parent has to consider, learning the basics, and also the intricacies of the IEP process, is important.  Parents can become experts for their child when they understand what is being planned, said and proposed for their child.  Susan was quickly learning in these first two meetings that she needed to know a lot more than she expected. 

Despite some of the unknowns, Susan was pleased with initial outcome of her first step into the special education world.  Surprised at how much goes into the meeting, Susan knew she’d be devoting time to become more familiar with the IEP process.  She also made a note that she had to learn the language better (like common IEP lingo such as 504 Plan, LEA, OT, SLP, PT, Gatekeeper, Gen Ed, Spec Ed, DD, MR, AU, PWN, IDEA, group setting, 1:1; objective, subjective; measurable).  She knew that would only benefit her when the team reconvened. 

By the end of the meeting, Anna’s team created goals in the areas that she struggled:  academic (to include math and reading), social and also speech and OT, which were part of related services.  They had reviewed Anna’s Present Level of Performance (PLOP), considered her strengths while accounting for her weaknesses and made sure each goal was objective as well as having measureable benchmarks.  They’d also decided where Anna would receive those services, for how long and who would be providing them. 

Also reviewed was how Susan and her husband would be notified of Anna’s progress.  Since Anna wasn’t capable of writing yet, Susan requested a communication log be used to track Anna’s daily activities.  They would record Anna’s behavior, when she had therapy and how her day went overall.  Since Anna couldn’t write yet and had already become withdrawn not wanting to share any of her school day news, Susan appreciated having access to how her daughter’s day was. 

Susan was astounded at all that went into this meeting and at how many documents and forms it took to track everything discussed.  Once the IEP meeting was over and the forms signed stating that Susan was in agreement with the district to implement the services, Anna would began working on the goals the team created. 

With that meeting done, Susan took time to go back and read more about the special education process and to familiarize herself with her district’s program.  In her search to know more about the program, Susan found a mentor through the special education parent advisory panel.  She set up a meeting with the mentor having a full list of questions to ask her. 

Susan was happy to find another parent who was a few steps ahead of her in the special education process.  The mentor walked her through what future meetings might be like, including the triennial meeting and a transitional meeting, which would occur when Anna heading to middle school.  Susan discovered that a meeting can be called at any time—by the school or by the parents, and can even be called and scheduled during the summer. 

Before Susan left, the mentor loaned Susan some books, promised to add her to the groups’ email list and said she’d be happy to sit with her at any IEP meetings that Susan’s husband wasn’t able to attend.  Susan knew other parents didn’t have as easy an experience as she did in getting Anna’s IEP started.  She was going to do what she could to keep the lines of communication open with the school, and not just with Miss Taylor, who she saw every day in the car pool line, but with the other members of the team she might only see at IEP meetings. 

Armed with more information, and while getting a better understanding of how the system worked, Susan knew it was still going to take effort to keep up with Anna’s needs.  She knew it would take time to get used to the changes, but was at the same time grateful that in identifying Anna’s delays, a team of people were readily able to address them.  With time, through her own research and by communicating with the team, Susan felt confident that she would be the captain of Anna’s IEP team.  That, and keeping positive, was what Anna needed Susan to be. 

Helpful Links

NCLD http://ncld.org/  

NYCHY http://nichcy.org/

IDEA  http://idea.ed.gov/

Wrightslaw.com http://www.wrightslaw.com

When it Takes More than a Team: when a parent has to navigate through the nitty gritty

What if, after following the many steps to create an IEP, your child fails to make progress?  Or, your school district hasn’t followed the procedural guidelines?  Or, an evaluation the district conducted is inaccurate or was not done by a highly qualified person?  Or, the therapy promised in the IEP hasn’t been delivered? 

Not every IEP meeting experience is going to have a happy ending.  Nor will every child’s school experience be a positive one.

What’s a parent to do? 

Depending upon which issue they’ve run into, parents have several options. 

-For the issues that might be more manageable but require a more-adept person to guide them through the myriad of paperwork, a parent might benefit from hiring an advocate.  Look to your local special education support group or special education advisory committee for your district for recommendations. 

-If it’s a procedural safeguard that’s been violated, a parent could be well within their rights to file a complaint at the state level.  Specific steps and documentation is necessary for this step, so review your state’s guidelines on how to do this.

-If it’s a testing issue that contributed to your child not getting the services they need, asking for an IEE (Individual Education Evaluation), funded of course at district’s expense, could help resolve this. 

-Or, if the problem is so great and the parent has already followed every step and gotten nowhere for too long trying to resolve the issue, filing due process is an option.  This is one of the most costly—both in time, money and emotions—but, parents have been successful in taking their concerns to the courts in order to get their child the appropriate education they deserve.

A parent’s role is as important as every person around the IEP team table.  In fact, it’s the most important as a parent knows their child better than anyone else.  Parents, once they recognize their child needs more support, need to get familiar with the law because it’s on their side.  A child can get educational and related services support at no cost when parents are the captain of the IEP team and know their role.  Know the law, the procedure and the safeguards, speak up, sign documents only when you are in full agreement, keep communication lines open, continue to research, don’t be afraid to ask questions and always keep your child’s strengths and abilities in the forefront of your mind. 

Your Special Education Rights: What Your District Isn't Telling You.

By Jennifer Laviano and Julie Swanson

The definitive guide for parents of children with disabilities is out.
This book is authored by two special education experts and draws on decades of experience from the front lines of special education advocacy.

The authors, Jennifer Laviano and Julie Swanson, detail a strong, practical, and results oriented perspective that helps parents cut through the fog of special education to get the services their children deserve.

"Our bottom line is parents are often ineffective at advocating for their child because they don't know their rights," said Jennifer Laviano, co-author and special education attorney. "We see it time and again: The child doesn't get what he or she needs because the parents don't know what they don't know.

"God, faith, family. It's part of who we are."

By Cathy Jameson

Once a month, my husband and I have been able to meet up for the evening Mass while one of the siblings keeps an eye on Ronan.  We turn that time into a date night, sometimes afterward actually going on a date.  We go to church and then stop in a favorite restaurant on the way home.  The last few times we’ve been able to meet up for Mass, we have called the kids on the way home and asked them to join us for dinner.  Even though that time had been reserved for just us, I love having the family altogether on our date. 

--

Last week, we juggled a few events while our older kids came home from college.  When we know we’ll be busy all day long on Saturday and through most of the day on Sunday, we plan as much ahead as possible.  That includes deciding when we’ll go to church.  Church comes first, it always has, even when we have a lot of things to get to. 

Knowing we’d be here, there, and everywhere, we discussed who would go to which Mass and where.  Some could go Saturday night, others wanted to go Sunday morning.  Some could go to our local church while others could go to the one day the road.  We ended up splitting up, as usual – some went Sunday morning while others of us went to the very late 7pm Sunday evening Mass. 

We have the luxury of going to 3 different churches, 4 actually, but we know Ronan doesn’t like to go to the 4^th church.  The one we chose has 3 different areas where we could keep Ronan as comfortable and quiet as possible.  He’s not usually loud in church, but he will stand up mid-way through the readings and want to leave.  At this church’s evening Mass, we see a few other families with special needs adult children.  We fit right in, so it’s a nice option when Ronan has the energy to join us.

Here, Ronan is used to sitting in the very, very back in the cry room.  It isn’t a big room, the pews are really close together, and when the air conditioner is off, it sometimes smells like mashed Cheerios and dirty carpet.  Most of the time, it’s just one other family who takes up residence in there with us.  Nodding or smiling that they recognize that Ronan is much older than their baby or toddler, we find a spot on one of the cramped pews and sit together.  Last Sunday night, we were surprised to see a large family with typical teenagers and young adults taking up 2 of the 3 pews.  At first, I didn’t know if these kids were truly typical, but by the end of Mass, they proved that they were the teens I try to avoid in quiet spaces.  They took out their phones, they talked to each other, they poked each other during the Consecration, and they tried to make each other laugh at other solemn part of the Mass. 

Two other families ended up joining us when their toddlers got too chatty in the main part of the church.  Those two other families had every right to be in the cry room, but man, did they add to the distractions!  Ronan picked up on just how loud and busy these two other children were.  I was so surprised because he doesn’t usually take note or stare at strangers like he was doing.  Our youngest daughter was with us, and she did an amazing job keeping Ronan focused by pointing to where we were in the missalette. 

By the end of Mass, I was more than a little frustrated – not at Ronan!  I was frustrated at these seemingly typical adults who did their very best to not participate in the most sacred hour of the week.  One hour.  They wouldn’t focus.  One hour.  They didn’t sing.  One hour.  They didn’t respond to the prayers or the readings.  One hour.  They couldn’t sit still.  One hour.  They almost ruined things for me.  But I wouldn’t let them because each time they fooled around, or knowingly distracted each other, Ronan remained focused.  He remained seated without wiggling.  He stayed next to us without trying to leave like he usually wants to.  Ronan went, attended to, and even participated in the Mass.  It has been a long time that he has been able to do that.  And he did it better than those teens, young adults and their parents.  Can I please get an amen! 

After receiving communion, we opted to stay in the narthex and not return to the cry room.  It was just too overwhelming and distracting.  Ronan indicated that he was ready to go at that point, too, so we said our after-communion reflections and tip toed out.  As usual, we stopped in our favorite restaurant for dinner, gobbled up some chips and salsa, and enjoyed some fun, family conversation at the table.

This weekend will be as busy as last weekend was for us.  We have a sporting event, haircuts scheduled, projects and homework to finish, a birthday party to get to, and time to spend with one of the kids who’s coming home from college again—we Jamesons will be hopping!  We’ll plan ahead on who’s going where and to which Mass first.  God, faith, family…it’s part of who we are, and I’m so glad that Ronan could be part of that faith bit for one hour with us last weekend.

Cathy Jameson is a Contributing Editor for Age of Autism.

###

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By Cathy Jameson

Years ago, I used to be on all sorts of social media sites, but the time I spent on those sites ended up bringing a lot of noise and distraction to me.  My focus would be better served elsewhere, so one by one I deleted accounts.  I limit myself to just facebook now and only with a few close family and friends these days.  Someday I may jump ship off of FB, but not yet.  I’m still hooked on the interactions and the memories.  Oh, the memories!

I’ve referenced the On This Day memories feature before.  Like previous times, something I saw on it last week made me pause and reflect.  Usually, the memory is still somewhat fresh, but I’ll be honest.  I don’t remember this post at all.

Thank you to our friends and family who are so totally awesome. Each and every one of you...you with the loud voices, you whispering a kind word, you hanging in the back waiting for the right moment to lend a hand, thank you. I heard this on the way home yesterday; it was a great message at just the right moment. Then I linked a song that had a great message. 

By Cathy Jameson

Developmental milestones are important to monitor, especially when a child is showing signs of delay.  The checklist I would have referenced for my son’s development would’ve been the one from 2004.  The CDC changed the checklist in 2022.  I haven’t discovered why yet, but people are talking about the 2022 changes again.

I saw this Facebook post shared by a longtime Age of Autism reader mid-week. 

I then found this recent video at the end of the week – the topic was also about the developmental surveillance milestone checklist from 2022.  

I’m part of a team that works with young children which includes observing and assessing their development.  Working mostly with typically developing children, developmental milestones are a big part of what I focus on when I evaluate their abilities in the natural setting.  Years of personal research, as well as research I did back in college, contribute to the knowledge I bring to the program.  Some parents are grateful for my insight when I share reports while others are not ready to hear what I see their child doing or not doing.  My heart goes out to those parents because many years ago, I was once in their shoes. 

Knowledge is power, though, so I work to build a relationship with the parents to help them understand what we report to them and how that information affects their child’s education.  I’m not part of a medical team, but it was good to review that second video as I gear up some initial assessments.  In that video, I was reminded of the steps my son’s team had to take.  That included recalling that pediatricians are recommended to complete a developmental surveillance – which is a screening done at every well-child visit.  At those visits, doctors will:

1 review monitoring checklist and the child’s history

2 ask about concerns

By Cathy Jameson

Like for other families, it can take weeks, if not months, of planning to get an appointment scheduled with a specialist.  Our specialists are pretty helpful and very respectful, so it’s usually worth the wait.  Sometimes, it’s not because of their busy schedules that have us waiting; sometimes it’s something else that causes a delay. 

The reason for our latest specialist’s visit is because for a while, Ronan has been experiencing something beyond his usual neurological issues.  We communicated this with our doctor telling her what we were observing and what strategies we were using to keep Ronan comfortable during the episodes.  When these weren’t just happening every so often anymore, we knew we needed to do more than just inform her of what was going on.  Rather quickly, our usual quick convos turned into lengthy discussions.  I appreciated her swift replies and how I could share more than just facts with her.  Our concern was growing, and she could sense that.  With how unusual things were becoming, we asked for testing.  Our doctor agreed that it was time that something more needed to be done for Ronan.   

We had everything set up for the big day:  Time off from work.  Bags packed.  Hotel room booked.  Since it was an early morning appointment, we wanted to be within minutes of the testing site, not have to drive the almost 2-hour trip there the morning of.  With everything ready, and with our youngest staying with a close friend while we were away, we got on the road. 

Getting into town the night before was one strategy that worked in our favor.  What we didn’t factor in was Ronan’s sensory defensiveness during the much-anticipated appointment.  No matter what we tried, he could not get through the procedure.

We tried everything.    

Oh, we tried. 

And we tried again.

But Ronan couldn’t cooperate.  Sensory issues.  Fear.  Adamant refusal.  It all kept us from being successful with the testing.  I was crushed because we’d waited so long to get to this day, to this appointment, to the possibility of a solid answer of what was happening.  

The provider who worked with us gave us some options. 

But it’s another sit and wait for everything to align for us to try, try again. 

I’m usually a perpetually hopeful person.  Friday, I wasn’t.  And it made me so sad to walk away.  It doesn’t take just a few days to get things scheduled. 

It takes time. 

Our medical team will come up with another plan for us soon, though, so I know that I will find hope again.  Until then, I pray that we can continue to comfort Ronan during whatever these episodes are.  I’d love it if you could pray with us, too. 

Cathy Jameson is a Contributing Editor for Age of Autism.

By Cathy Jameson

Remember when… that’s the name of an online page I like to visit.  It’s full of memories from a small town where I used to live a long time ago.  Many of the topics are of the original settlers to the area and their descendants.  I’ve learned about which families came first, which businesses they opened, and which ones still exist decades and decades later.  Even though I only lived there for 4 years, this place will always have a very special place in my heart.  I cherish friendships made and am very grateful to still be in contact with friends so many years later. 

Being a military brat, I’d get to know the people and the surrounding places we’d move to, and then a few years later, we’d move miles and miles away.  That was life, and it’s all I knew.  I love getting to peek at the past in these Remember when… stories because many of the original families, too, traveled a great distance to set up residence.  The difference is that they never left. 

Some of the recent photos that were recently shared on the page are of the original town library, the original school, some of the first teachers, one whose name now adorns a new multi-level, multi-grade, tech savvy building.  Last week someone shared photos of what the original playgrounds included - swings, a very tall metal slide, and an intricate set of monkey bars that would likely never be allowed on certain properties these days.  

I remember when I used to play at those kinds of playgrounds, when I walked to those smaller schools, and when there were truly only a handful of students who needed educational supports.  These days, so much more support seems to be required, and not just at school.  We see that being offered in grocery stores, shopping centers and movie theatres in the form of sensory-friendly activities, with recognizing emotional support animals, and with the addition of para-professional assistance.  I’m not saying any of that is a terrible thing; it’s that it’s increased astronomically since I was a kid playing on death-defying playgrounds in small towns in the south.

I remember when kids had more time to just be a kid and to explore. 

I remember when teachers only had to teach those kids, not teach to a test, as some most, while fearing for their lives because of school violence.  

I remember when doctors were respected and worked with parents, not against them as I experienced when my children were younger.

I remember when things were so much simpler!  Of course, I was a child when things were really
simple.  Times have really changed across-the-board and in so many aspects since then.  It’s good to talk about what we remember, which is why I love logging in and seeing new posts on Remember when…

 It’s good to see the past and to also yearn for it. 

It’s good to see who the pioneers were. 

It’s good to know their stories and to want to honor their lives and their work ethic. 

We each have our own stories, and many have shared their own Remember when… stories here.  They’ve written about what was and what changed.  That’s what brought me here and why I still share bits and pieces of what life was like for us before Ronan got sick and what life is like for him now. 

What brings you here?  What brings you back each week?  Is it something that makes you Remember when…?  I hope whatever the reason may be is one that gives you hope, peace and maybe a little bit of happiness.

Cathy Jameson is a Contributing Editor for Age of Autism. 

###

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Anthony Fauci seems to have not considered that his unprecedented quarantine of the healthy would kill far more people than COVID, obliterate the global economy, plunge millions into poverty and bankruptcy, and grievously wound constitutional democracy globally.

Note: Cathy's "Littlest Pickle" is off to college this weekend, so we're running a Best of."

By Cathy Jameson

As we make plans for a family getaway this summer, I realized that I never shared what we did on our family vacation from last year.  After months of planning, we took the kids with a two-week vacation to the Pacific Northwest. 

Since I love surprises, we didn’t tell the kids where we were going until we were on the plane.  They guessed and guessed and guessed all sorts of fun places we might go.  Little Buddy guessed correctly that we were going to Washington state.  It wasn’t an easy trip to plan, but it was one of the neatest ones we have been able to go on as a family.  From one coast to the other, with all seven of us traveling, our trip was quite the adventure. 

TGIF: Toes Go In First…even if the water was only 55 degrees!

Plan, Plan, and Then Plan Some More

On any given day when Ronan and I leave the house, I plan ahead.  I think about how long we’ll be out of the house and pack what I think we may need.  That includes diapers, wipes, snacks, and a change of clothes, seizure meds, and emergency seizure meds.  It isn’t much to carry around, but those essentials must come with us. 

I knew that we’d need to bring a lot more than those few items on a cross-country trip.  Planning for the trip and for the length of time we’d be gone took months.  I had to think about so many things.

The travel aspect – Ronan hasn’t been on an airplane since 2007.  A million questions went through my mind as I thought about our trip.  Would he board the flight willingly?  Would he stay calm on the flight?  Would the flight crew understand autism?  What if we run into delays – what can we do/bring to help Ronan handle that?  What if we had a medical emergency en route?  How would we manage that?  Not being able to do a practice run at an airport in our area, I knew that we’d be winging it and that we’d have to plan for every possible scenario and hope for the best.

by Cathy Jameson

I promise you that I would never have gone grocery shopping had I known what was to come.  I was just getting a little bored and needed to get out of the house for a bit.  Even though it was almost dinner time, I loaded up two of the kids and headed to Costco to restock some bulk items.  

Ronan had dealt with some odd episodes that morning, which kept my focus on him all afternoon.  Besides that, we don’t have cable, and I’d stayed off of the news sites the rest of the day.  I didn’t miss any of the political updates and other stories from around the world.  But I did miss that we were under some severe weather watches. 

On the way to the store, it started to sprinkle.  Light grey clouds had filled the sky all day, but nothing seemed too unusual to me.  Costco was so busy that I couldn’t hear that the clouds had unleashed buckets and buckets of rain while we were in the store.  Not until we got closer to the exit did I see just how messy it looked outside.  Rain was coming down so hard, and it was much darker than I thought it would be – how long were we shopping?? 

We weren’t really in there that long, but we were inside when the weather reports went from we’re under a tornado watch to a tornado warning.

I saw a similar image 2 years ago – it’s genius!

Still, I had no idea we were even under a watch.  I had given up listening to the car radio during Lent several months ago.  I keep it off after Lent turning that quiet driving time into prayer time.  Prayers help me get through some tough moments and through disappointing news.  Prayers would be most welcomed as we not only got caught in a deluge in the parking lot with Ronan in his bulky adaptive stroller.  They’d help get us home through the tornado that was looming in the area.

Running through puddles, juggling the rain-soaked groceries, and then helping Ronan navigate through the rain kept my heart rate up.  Ronan and his youngest sister and I were soaked!  None of us were wearing jackets because none of us expected the torrential downpour, so the drive home in our wet clothes would be a tad uncomfortable.  That didn’t dampen our spirits too much as we were looking forward to being back at the house, ready to try some of the new treats I’d bought.     

While the two kids sat in the back, I turned to my usual prayer routine as I turned onto the highway.  Happy for that quiet time again, I focused on the road.  With just how much rain we were still getting, though, I thought I should probably turn on the radio.  The clouds were getting darker and also a little bit lower.  I found the local station and hoped for a weather report.  I didn’t have to wait too long.

“If you’re on this section of the highway…seek shelter now.  A funnel has been sighted.”  

OH GEEZ!  We had just passed that section of the highway! 

No wonder it looked so ominous out there. 

We’ve driven through tornadic activity before, and holy moley, it’s quite scary.  Every few months we talk about emergency weather plans, but we’ve been blessed with mostly mild weather since the winter and haven’t had those weather convos.  Spring saw some thunderstorms, and it’s been hot and humid all summer, which is not terribly unusual.  We don’t see too many tornados, and would I ever plan to be driving near one if I can help it!  So, I shared a quick lesson with my daughter on what we’d need to do if the tornado, which had touched down right after that new report, was moving in the same direction we were.  That included how we’d have to get Ronan to cooperate with us.  He can be an easy-going kid.  But when he doesn’t want to do something, it can take some creativity on our part to get him to join us.

I wanted to make a bee line home but ended up driving slower than I normally would due to the flooding on the roads.  Once home, we got a battery powered radio on as soon as the groceries were unloaded.  The storms lingered south of us, thankfully.  Even so, we kept the radio on and also looked up what the forecast was for the next few hours.  The weather would continue to be severe in areas close to us, which meant we could experience potential flooding as well as potential tornados.  Before bedtime, we talked about a plan – for the girls, me and Ronan’s sisters – if weather turns, we immediately get to the safe spot in the house.  For the boys, my husband and Ronan’s younger brother – they immediately get Ronan out of bed because he will need to be picked up and taken to the safe spot in the house. 

I don’t like to imagine what could happen during an emergency situation when we’d have to book it out of somewhere quickly.  I especially don’t like to imagine what could happen to Ronan if we can’t get to him or if he refuses to follow directions.  We’ve had a few emergencies to handle, with most of them taken care of timely.  A tornado, though?  I’ve heard those happen faster than one expects, and I know they cause a great amount of destruction instantly.  

Our weather emergency plan fortunately didn’t need to be acted on that night.  The rain subsided at some point while we were sleeping, and our area stayed out of the fray.  Others were not so lucky, but I read that neighbors rallied to help remove storm debris.  We’re grateful to be safe and sound and will hope for that again when the next storm rolls through.

Cathy Jameson is a Contributing Editor for Age of Autism.

###

Get to know The Real Anthony Fauci in this #1 best seller from Skyhorse Publishing.


Real Anthony Fauci: Bill Gates, Big Pharma, and the Global War on Democracy and Public Health

Anthony Fauci seems to have not considered that his unprecedented quarantine of the healthy would kill far more people than COVID, obliterate the global economy, plunge millions into poverty and bankruptcy, and grievously wound constitutional democracy globally.

Woe to You

By Cathy Jameson

The kids had had the opportunity to go out of town together, but when those plans changed, I thought of a few things for us to do in town.  We had a full afternoon of fun planned.  Our day would start with no appointments and no helpers helping us that day.  I love our helpers, but with no helpers coming over, we’d all be able to sleep in. 

Sleeping in is a treat, but you can’t sleep in if you don’t stay asleep.  Ronan decided to not sleep through the night on Wednesday night, so I cat napped through the night instead.  The relaxing start to my day didn’t happen.  It started with a jolt.  Like when he was a baby, I can tell when Ronan’s ‘happy noises unto the Lord’ are not so happy and that he needs help.  Around 1am and over the next few hours, he’d squawk out a round of laughter.  My eyes would open widely, my ears would listen intently, then my brain would settle knowing that he was okay. 

When the sun was just creeping up, Ronan got louder, and I could no longer cat nap.  I was now as wide awake as he was.  Ronan is usually content to read his books and look at his pictures, similar to the ones Kim mentioned in her recent post.  But that morning he was raring to go and was as happy as could be.  He was a little unsettled in finding a cozy spot, something he finds once he’s used the bathroom.  That morning, when one couch wouldn’t do, he’d get up and go to a different couch.  When one Wii game wasn’t keeping his attention, another one was attempted.  He’d been a little bit agitated the day before, but this was different.  After a few minutes, he finally settled himself on the brown sectional in the den.  With how content he finally was, I curled up on the other end of the couch and caught another cat nap. 

I’m convinced I never fully sleep.  I’m sure I didn’t that morning because before I woke up, I could tell something was wrong.  Jolted awake to noises that were not coming from where I knew Ronan had been sitting, I saw that he had just gone down on all fours on the floor.  Oh, no!  The last few times he’s done that is because of seizure activity.  I quickly got up, picked him up and walked him toward the other couch, the black one in the living room.  He had pointed in that direction, so that’s where we went.  With wobbly legs, as if he was standing on a boat being rocked by waves, we made our way through the house to the other room. 

Once seated, Ronan’s head turned quickly.  Then his eyes went blank.  The eyelids did some fluttering.  Then he jerked his head again looking up at something even though nothing was there.  Damn it!  Seizures.

The kind he’s experiencing lately have gotten more intense.  As absolutely horrible as they are, I am thankful that Ronan can feel them coming on.  He knows to find a cozy spot or to find me when they begin.  The last 3 times, I’ve happened to be home – with nothing on my schedule, when they started. 

This cluster was quick and took his energy away.  Once they were finished, he started to sleep it off.  It was only 8:30, way too early for us to be heading out.  The kids weren’t even close to being awake yet anyway, but if he bounced back, maybe we’d be able to do something later.  He had bounced back those other times, but I’d have to wait and see how he was feeling to know our options. 

The kids started to wake up around 10am.  

“Shhh, tiptoe.  Ronan’s had quite a day already…”  Understanding, they were quiet so that Ronan could continue to sleep.   One, two, three, four hours went by.  Ronan was up for a stretch between 11 and 12, but he stayed in bed under covers through the early afternoon. 

It wasn’t as quick as previous times, but Ronan rallied, and the kids graciously helped him as he stirred.  Earlier, we looked at what we might still be able to do.  We’d have to skip one thing, but we could go to Ronan’s favorite store and also grab a quick dinner out.  I’d promised the kids that they could go to the movies after our fun day out – but they’d be going without me since the movie was a psychological thriller with some jump scares.  They gave me a pass since they know I’m a big ol’ scaredy cat who doesn’t like those kinds of movies. 

If we timed our outing just right, I could still take the kids shopping and also get them to the theatre on time.  It was later than we expected to leave, but with Ronan, we made it out of the house for some fun, some food and for that early evening showing.  The kids were all smiles that night, Ronan, too.  I was beyond thankful for that. 

Each evening this summer, we’ve been reading the Bible.  That started because Ronan’s younger brother and I had wanted to do one study of one book of the Bible together.  We’ve read five books and have included the whole family in the study.  We sometimes simply read through the chapters, and other times we will stop and discuss the message.  The discussions are short but very worthwhile.  I’m also finding that oftentimes, the messages from the readings have been not so random to events we’ve witnessed or are dealing with.   

Since our schedules can still be somewhat all over the place, even though it’s summer, we facetime with whoever isn’t home.  We had been doing our family prayer time around 9:30, but if we didn’t set a timer, it would be almost 10pm before we opened the Bibles.  Readings got delayed, bedtime got delayed, and by the time everyone was tucked in, we were up way too late.  So, we were gathering an hour earlier.  That night, even though I’d caught another nap while Ronan slept after the seizures, I was ready for bed already, but it was 8:30…ring…ring…we were all on screen and we were ready. 

With everyone on, we began.  First the Psalm, then the next chapter in Matthew.  It was my turn to read Matthew 23:    

…Call no one on earth your father;

you have but one Father in heaven.

Do not be called ‘Master’;

you have but one master, the Messiah.

The greatest among you must be your servant.

Whoever exalts himself will be humbled;

but whoever humbles himself will be exhausted.

I stopped myself. 

I mean exalted! 

…but whoever humbles himself will be exalted.

I was so, so tired, so ridiculously tired, but I started laughing.  Then I couldn’t stop laughing.  It was one of those punch-drunk kinds of laughs that made everyone else start to laugh.  When I caught my breath, I continued to read.  The rest of the chapter were messages to the Pharisees …woe to you, you hypocrites…on the outside you appear righteous, but inside you are filled with hypocrisy and evildoing…you serpents, you brood of vipers, how can you flee from the judgment… Those verses brought me back to some of the emotions I felt earlier in the day – anger, regret, sadness knowing that some of my child’s issues could’ve been prevented.  Many I time I felt…woe to those providers who stood in my way to keep my child healthy. 

It’s exhausting this parenting thing!  I struggled that entire day.  How do I parent Ronan and the kids at the same time?  How do I parent them and also take care of me?  Some days, most days, I come last – that’s part of parenting, and that’s been okay.  With the kids’ help that day, I stepped away from Ronan while he was sleeping so I could finally take a shower.  I grabbed a quick bite to eat also, but I was back in his room as fast as I could.  When he was fast asleep, I sat in the hallway right outside his room.  I stayed there until he woke up.  The kids kept themselves busy and hopeful all day – we all wanted Ronan to be well again.  Holding onto hope and our plans, we all wanted him to join us if we got to go out, too. 

They’re older now, and the kids can surely take care of themselves.  But that day, they wanted me to be with them.  We’d made plans to be together.  We’d made plans to bring Ronan with us.  We made plans to have fun out of the house.  If there’s one thing they’ve learned the last few years it’s that we have to be flexible.  Being flexible paid off this time.    

That night, we prayed thankful prayers that Ronan was feeling better.  We prayed for a better day tomorrow as well.  I prayed for the kids, for our family and for some special intentions.  Prayers help see me through.  Lately, I’ve been leaning on them more than I ever have before.  Til my fears are gone…to remember that He’s leading me…and to always remain hopeful. 

Cathy Jameson is a Contributing Editor for Age of Autism.

https://www.youtube.com/watch?v=WW0VJxPqeRc

###

Get to know The Real Anthony Fauci in this #1 best seller from Skyhorse Publishing.


Real Anthony Fauci: Bill Gates, Big Pharma, and the Global War on Democracy and Public Health

Anthony Fauci seems to have not considered that his unprecedented quarantine of the healthy would kill far more people than COVID, obliterate the global economy, plunge millions into poverty and bankruptcy, and grievously wound constitutional democracy globally.

By Cathy Jameson

I offered to work a yard sale last week.  It would potentially be a pretty big event and would help the organization create some much-needed storage space.  Lots of books, boxes of school supplies, more than a handful of knick knacks and other items could be sold.  We had tons of gently used items, some brand new with tags and a few electronics, too.  I have only had one yard sale of my own and had forgotten how much work goes into it.  It’s a lot of work!  The time it took to sort through everything, tag everything, set up everything and then sell everything took days.  I was happy to help though.  We met and exceeded the goal of how much I had hoped to make, and we got rid of tons of items that were no longer needed. 

My Blockbuster card, which I still have.

Several big-dollar items were donated to the sale, which
made me wonder if I had anything at home that I could contribute also.  As I got piles and piles of things sorted one afternoon, I recalled a pile of things in a large box I had sitting in my house.  I told my youngest, who’d joined me a few times to help us prep, that I’d go through our VHS movie collection and see if we had anything worth donating.  I promised her that I would not give away any of our favorites.  Easily, that box had 50 movies, some we’d bought and watched, and others gifted to us by neighbors before they moved. 

Picking out 5 movies I knew the kids wouldn’t miss, I then remembered we had two drawers full of children’s movies in an old dresser.  These would be harder to part with.  I recalled the happiest of memories of when kids watched those together.  Others were just classic kids’ shows or movies that I wasn’t ready to give away.  Veggie Tales, Blue’s Clues, Kidsongs, and the older (and much better) Sesame Street videos…these are ‘the classics’ that my kids grew up watching.  Even if they didn’t want to pop them in the VCR anytime soon, I didn’t have the heart to donate them.  What I’d rather do is see if a family in our community needs them. 

Years ago, a dear friend in California posted that her friend was looking for particular Barney movies.  The friend’s adult daughter with autism loved Barney, but only when it was produced during a certain timeframe.  The newer shows would not do, it had to be one of the older ones and on DVD.  Sharing details, I jotted down the years this young woman’s favorite episodes came out and went hunting for them at the thrift store.  I love a good thrifting day, and I especially love helping another mama.  As luck would have it, I found a DVD that fit the bill!  I was so excited.  My friend was excited also, and her friend was grateful.  On other trips to the thrift store, I’d find more DVDs.  I didn’t think twice – in my cart and then mailed across the country each disc would go.

By Cathy Jameson

It didn’t matter that we’d made an appointment.  The DMV was running behind.  35 minutes behind.  I’d specifically booked an appointment mid-week because I didn’t know if Ronan would tolerate the noise, the busy-ness, or the potentially long time we’d be there.  Booking that appointment would assure me that we’d be in and out faster than usual. 

Or so I thought. 

We only had one quick transaction to take care of that afternoon.  Once we stepped foot into the building, I knew there would be nothing quick about our visit.  People everyone.  Kids everywhere.  Noise everywhere.  I’d never seen this DMV as busy and chaotic as it was.  One never knows how long state government appointments run, but past history told me we’d be there for some time. 

I wasn’t wrong.  

Ronan took all of it in stride.  His little brother, who now towers over him by almost a foot, joined us.  I thanked the Lord that he was there and that Ronan had been there before with me and his siblings several times over the years.  When the kids were old enough to get their licenses, when we had to renew registration or get new plates for new vehicles, Ronan’s weathered the mind-numbing bland state-run office more times than he probably wanted to.  When I could get someone to stay home with him, I’d still want to go to the DMV and be done  there as soon as possible. 

Time seems to stand still in places like this.  

This time, though, the appointment was for Ronan, so he had to go.  I’d put off getting a photo identification card for Ronan for a long time, but several places we go require a photo ID.  His passport works great and is still valid.  I just don’t want to risk losing it when we go out.  One of our providers recommended we get a state ID, which made sense.  One thing on the form didn’t make sense and that was opting Ronan into the Selective Service.

I couldn’t opt him out. 

I’d read that other parents have dealt with this and that it’s stirred up several emotions.  Sadness is the biggest emotion that overcomes them as they ponder the ‘what ifs’.  Their child, like mine, cannot serve in the military.  

What if my son wasn’t disabled…could he have served?  

Fit for duty?  There’s no way. 

I’ve already had to fight for him throughout his entire childhood, and now I have to put my dukes it all over again.

Some of us are tired of the fight and are concentrating on quality of life for our adult sons.  I know the lady at the DMV didn’t want to hear Ronan’s story, but as Ronan’s mom, it’s my responsibility to continue to tell it so that I can continue to help and protect him.

“Ma’am, I can’t check any of the 3 boxes in this section,” I started.  “We haven’t already registered him, he’s not a non-immigrant alien who’s not required to register, and I don’t want to authorize the DMV to forward any of this information to anyone else.  If you had a 4^th box, one that said ‘unable to serve’, that’s the box I’d check.  What do you suggest I do?”  I asked.  I knew she wouldn’t have a clue.

She was brand new and the sign at her station indicated she was still in training. 

After waiting 35 minutes for our scheduled appointment, we were randomly assigned to the one rep who had never done a state ID for an adult male with severe developmental delays.  Despite that, I smiled through the entire transaction, because I have been that new person who’s learning as she’s going. 

It’s a tough place to be when you haven’t gotten all the information yet.

I would never do anything that would jeopardize my son or our family, but I felt blindsided and frustrated that the general form made no concessions for people like my son.  Even so, I was as honest and forthcoming as possible.  It went up me sideways, but I believe that honesty is the best policy. 

So I left a note on the application instead. 

I starred the section, left some information that I thought was helpful and hoped that whichever admin would read it next would takes a few minutes to thoroughly go through the attached Guardianship letter that I had to include with the ID application.   That document tells some of Ronan’s story and lays out reasons why he cannot drive, vote or serve. 

Thankfully that document doesn’t tell the whole story because we know that Ronan can do some things…

He got through the appointment at the very loud and chaotic DMV for that photo ID he sometimes needs.  He stood still for his picture.  And he signed ‘thank you’ as we left the counter.  To get through that agonizingly long afternoon appointment was a feat!  I opted not to take him back to the DMV at the end of the week when his little sister was scheduled to take her driver’s permit test.  He’d done his time already and didn’t need to sit through any more madness again.  I’m sure we’ll be dealing with a different kind of madness when someone from the Selective Service office gets wind of my message. 

All males under the age 26 are required…

Like that new rep who hadn’t hasn’t experienced everything about her new job yet, I, too, haven’t experienced everything either.  So, it’s off to read and research, and to pray, that we’ll have exactly the right information and exactly when we need it.

Cathy Jameson is a Contributing Editor for Age of Autism.

###

Get to know The Real Anthony Fauci in this #1 best seller from Skyhorse Publishing.


Real Anthony Fauci: Bill Gates, Big Pharma, and the Global War on Democracy and Public Health

Anthony Fauci seems to have not considered that his unprecedented quarantine of the healthy would kill far more people than COVID, obliterate the global economy, plunge millions into poverty and bankruptcy, and grievously wound constitutional democracy globally.

Please hightail it over to the National Autism Association for life saving information about wandering and prevention. 14 children have drowned since June. FOURTEEN.  You'll never hear the stories linked in the news because that would draw attention to the epidemic.

By Cathy Jameson

I’ve written about wandering over the years, but I will never forget the very first time that it happened. 

That day, when my husband and I realized that our non-verbal son had left the house, we immediately took off to find him.  My husband went running down the street while I went running up the street.  Nestled in a neighborhood with lots of trees and quiet backyards, we knew that Ronan could be anywhere.  After he slipped out of the house undetected, Ronan managed to cross the street.  He continued to walk away from our house and ended up in a neighbor’s backyard.  Calling for him, even though we knew Ronan couldn’t respond, we needed to find him quickly. 

Beyond that neighbor’s backyard was a lake. 

My husband heard Ronan first.  Bolting through the neighbor’s yard, he ran as fast as he could.  Even though only a few minutes had passed since we discovered that Ronan had left the house, Ronan was in the lake.  At the time, he did not know how to swim and was desperately gripping the cold and slippery piling of the neighbor’s dock.  With teeth chattering, and hair and clothing soaking wet, we were lucky to find Ronan when we did.

That day still haunts my memory.  

It was late January.  Despite the sunshine and clear skies, the temperature was below freezing.  Almost fully submerged by the time we got to him, his clothing was beginning to weigh him down.  I thank God that Ronan was wearing a bright yellow GAP fleece jacket that day – not that the fleece would keep him warm while he was under water.

That bright color clothing helped us locate him in the water. 

After getting Ronan out, we breathed a sigh of relief.  But only for a moment.  Having read that children with autism are prone to wander – and that they sometimes seek bodies of water like Ronan just had, I was terrified.  I knew we needed help and quickly to make sure this didn’t become a habit for my son.  

But first, I cried. 

Actually, I sobbed.  Once Ronan was changed and had warmed up, I crouched down in the corner of my kitchen sobbing.  I stayed there, sinking lower and lower until I was on the floor, hugging my knees.  For a long time, I couldn’t move. 

Fear paralyzed me.  

Not wanting a repeat of what just happened, we immediately looked to see what other families were doing to prevent wandering.  We installed door chimes and posted visual aids for Ronan and his siblings (stop signs) on every door that led outside.  We came up with a plan of telling each other when we were going outside and when we needed to lock the door behind us.  Those strategies helped.  Those, and knowing that we were not alone in trying to solve the potentially life-threatening situation that wandering brings, helped us a great deal. 

Parent testimonials and other parents’ advice had given us confidence to keep our child safe. 

That first wandering happened around 2006.  Ronan is still prone to wander even now in 2024, but his desire to leave the house has greatly reduced.  We still have safety protocols in place to assist us at a moment’s notice.  We do that because of one very important fact. 

It takes only a moment to leave the house undetected. 

That story of finding Ronan in the lake above was part of a testimonial I wrote several years ago.  The day I wrote it was also the day I cleaned out a hutch that we used to have.  It had beautiful woodwork and hinged doors that, when opened, reveal several compartments.  It used to house some of our electronics, but I'd been using it for storage for other things.  In it was a box of my kids' artwork that I'd saved, some medical EOBs that I need to sort through, and an extra copy of Ronan's medical records.  As I sorted through the medical records, I saw some wandering information that I had collected because for years, Ronan would go through phases of wandering. 

That day, I also found something else. 

Stuffed behind the papers was a small bright yellow fleece jacket.  It was the only article of clothing in the hutch.  It's also the only article of clothing that instantly takes my breath away.  That fleece jacket was the jacket Ronan was wearing the day we almost lost him in the lake on that freezing cold day so many years ago!  

Why save it?  

Why hold onto it?  

Why not throw it out or at least give it away?  

Why keep something that instantly reminds me of one of the worst days of my life?  The only answer I have is, I don't know.  I don't know why I saved something like that.  It's not like it brings back happy memories.  Hardly!  I remember that day so clearly – the intense emotions, the terrible worry, and the awful, awful fear.  I remember the relief and the thanks-be-to-God moment that followed once we got Ronan safely home, but it truly was the worst day of my life.  

I can only think that I saved it to remind me not that we didn’t lose Ronan that day but that we were able to save him.

Not every wandering story has a good ending, and even the ones that do have good endings are never easy to write about.  It’s been a long time since I’ve written about this topic, and it would be so much easier to write about something hopeful and happy that Ronan's done lately.  Until parents like me never have to worry about their children leaving their homes undetected, through the tears, through the pain, and through the awful, awful reminders of just how fatal wandering can be, I will continue to write about it. 

Cathy Jameson is a Contributing Editor for Age of Autism.

###

Get to know The Real Anthony Fauci in this #1 best seller from Skyhorse Publishing.

Real Anthony Fauci: Bill Gates, Big Pharma, and the Global War on Democracy and Public Health

Anthony Fauci seems to have not considered that his unprecedented quarantine of the healthy would kill far more people than COVID, obliterate the global economy, plunge millions into poverty and bankruptcy, and grievously wound constitutional democracy globally.

By Cathy Jameson

It was supposed to be a quiet Friday.  

But Ronan woke up early.  

Soon after, he started having seizures.  

We haven’t seen those in a really, really long time.  When he was having frequent seizures years ago, they had typically been subtle.  Some were big and scary, but for the most part, they were small and quick.  The ones on Friday were not so subtle and mimicked seizure activity we saw briefly back in December.  Remembering how those knocked him off his feet, I rearranged my plans Friday morning.  Sitting seizure watch and waiting for them to be over was much more important.  

I never had to use the rescue meds, thankfully, but a call to the doctor was in order once things subsided.  With how infrequently the seizures are lately, I wanted to get verification that our protocols were still valid.  A nurse answered right away when I called the neurology office.  After answering a slew of questions, my call was logged and forwarded to the attending.  Like earlier, I had to sit and wait for a reply.

The doctor called within two hours.  This isn’t his usual doctor; she’s temporarily away from the office, but another doctor we met at our last visit called me back.  Grateful that she had some history with us, she started by saying, “Hey, so sorry to hear that Ronan had a tough morning.”  It’s always encouraging to hear Ronan’s medical team start their conversations with compassion.  She then went right into his history, listing which meds he takes and when.  We talked about what we tweaked last time and what today’s seizure activity included.  What I saw was similar to what happened six months ago, but new stuff happened also. Could these be stacked seizures?  

He’d get a little break. But while sitting on the couch, clusters would come in cyclical waves. I couldn’t wait for them to be over.  He’s unable to tell me, but I’m sure he wanted them over, too. Seizures suck.  They really, really do.  So does waiting for Ronan to wake up after seizures.  Will he be refreshed?  Will another round begin?  Will he be scared like he was when the first ones started?  Immediately after these episodes, he finally gets a break to sleep off the intensity, but I am jarred and can only think of the worst ‘what if’ scenarios.  The only comfort I have ever felt in these terrifying situations is that Ronan has reached for me.  

While his vision is affected by these latest seizures, he still tries to find me.  Like that time in December, I thanked God that I happened to be home and only a few steps away from him when this all started on Friday morning.  That reach, that confused and scared stare, it was so heartbreaking to see.  Dear Lord, it was scary for me.  I can imagine it’s a thousand times scarier for my son. 

As Ronan slept it off, I got to work looking up seizures again.  It had been a while since I had to look those up.  Last year, we thought he might have been experiencing something else, so I put more effort into other topics.  Knowledge is power, though, so I got to work reading medical articles and watching medical videos about potential causes, treatment, and research.   

I didn’t have to wait too long for Ronan to feel better.  By noon, he bounced back to his happy, chill self.  I pray he always willbe able to do that.  

Cathy Jameson is a Contributing Editor for Age of Autism.  

###

Get to know The Real Anthony Fauci in this #1 best seller from Skyhorse Publishing.

Real Anthony Fauci: Bill Gates, Big Pharma, and the Global War on Democracy and Public Health

Anthony Fauci seems to have not considered that his unprecedented quarantine of the healthy would kill far more people than COVID, obliterate the global economy, plunge millions into poverty and bankruptcy, and grievously wound constitutional democracy globally.