Cathy Jameson Feed

An Autism Parent’s Vows

Love You ForeverBy Cathy Jameson

The high school spring sports season just started, so Fiona’s not getting home until almost 7pm.  As soon as dinner is over, the rest of her evening is devoted to studying.  Ronan’s big sister works hard both in the classroom and on the field, so when I found out she didn’t have school on Friday, in the midst of some errands I had to get done, I planned a girls’ day out for just the two of us.  We weren’t going to do too much, especially after we found out that the coach set up a last-minute practice session for the team, but we were going to make the most of the few quiet hours we had together. 

All was going as planned on Friday until Ronan had a seizure.  It wasn’t a big one, but no matter the intensity or the duration, seizures don’t just stop Ronan in his tracks; they have a way of stopping me in my tracks as well.

The seizure was quick, and within a few seconds, it was over.  Right before it happened, one of Ronan’s therapists arrived to the house.  She and another young therapist had a full day of activities planned for Ronan.  Instead of confidently walking out of the house like I usually do when these women arrive, I contemplated staying home.  Assuring me that they were able to do “seizure watch” for me – which includes knowing when to administer emergency meds should they be required, I tiptoed out of the house. 

As we drove away, Fiona asked, “They know what to do, right?” 

“Yes, honey,” I replied.  “They know.”

One of the young women has a sibling with epilepsy.  Having witnessed the havoc they wreak on her own family, seizures were not new and not scary to her.  The other young woman has been with us long enough to recognize not just behavioral changes but the physical changes that sometimes accompany Ronan’s seizure activity.  I told Fiona that I trusted our staff and that we could still go out.  Even though he was in good hands, I felt guilty leaving Ronan.  As tough as it was to walk away, that’s exactly what I did. 

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Alike But Different

Empty giftBy Cathy Jameson

Some people try to tell us that our children’s diagnosis is a gift.  They think it’s something we should treasure.  Forgetting just how very complex it is, some people try to simplify it.  That happens when they say that autism isn’t much more than a different way of thinking. 

If only that were really the case.

For many, including for my child, autism is medical.  It’s loss of acquired skills.  It’s the onset of seizures.  It’s problems with the gastrointestinal tract.  It’s the inability to speak.  It’s cognitive deficits and lack of independence.  That kind of autism exists, but mainstream news tends to show only bright and shiny ‘fee good’ autism stories.  I love to see those heart-warming stories, but rarely do I get to see ones that represent my son. 

Thinking that it may just be a US trend to highlight only happier tales, I looked on some international Parents who Creatednews pages to see what sort of autism stories they were sharing.  While scrolling through a few of the featured stories on the BBC last week, I came across a few ‘feel good’ piece.  The title of one caught my eye.  The fact that it was medical in nature made me even more curious.  The story wasn’t about autism, but I had to find out more. 

I much prefer to read my news than watch it, but the accompanying clip was too good to pass up.

Imagine.  A devastating diagnosis x 2!  With nowhere to turn.  With no one able to help.  The parents research on their own.  Yes, research.  It proves promising.  It has the potential to help their children.  The parents find a team, a TEAM of medical providers to help them.  The research, the hard work, the never quit attitude and the unique drug that the parents create yields results – good ones!  The girls are improving.  They are gaining skills.  They have a better quality of life.  The family hasn’t found a cure…yet, but everything these parents have done is promising.  With the potential to help other children.  With the desire to reach other parents.  With love, determination and support, the parents have moved mountains.  Others recognize that.  They reach out to the parents.  The parents make themselves available.  How very exciting! 

So why did I feel a twinge of jealousy as the news story ended?

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Third Time’s a Charm

All threeBy Cathy Jameson

I’ve heard a similar response 3 times from 3 different people over the last 3 weeks.  When I hear something 3 times, I take it as a sign that I need to either investigate it or write about it.  Sometimes I’ll even pray about it.  Since the comments all stemmed around the HPV vaccine, which I’ve already investigated, I thought I’d take a stab at writing about the things I’ve been hearing.

We still vaccinate…well, except for the HPV vaccine.  That one scares me, so I won’t let my daughters get it. 

I’m selective in what shots I get for my kids.  I don’t mind getting some of them, like the tetanus shot.  But I’ll never get the flu shot again, and I won’t even think about getting the Gardasil vaccine.  I think that one is dangerous.

I’m not sure really what to believe about vaccines causing autism because I trust my doctor.  He says there’s no truth to it.  My kids are current (on their shots)…all except for the HPV.  I don’t buy into that one.  We do all the others mostly because I don’t really want to know what I don’t know, if you know what I mean.

I’m glad that these parents know a little bit about the HPV vaccine.  The little bit that they know is enough to say no thanks.  But what I can’t understand is why they’re so quick to say no to one vaccine but not the others.  They readily accept all of the others.  But the others they’ve accepted, like the Hep B, the MMR, and the Varicella (chickenpox) vaccine have something in common with the Gardasil vaccine – they’re all made by the same pharmaceutical company, Merck

Maybe the other parents don’t know enough about that company, but I know enough about it to say no way to all of their vaccines. 

Merck has seen not just one but 2 other whistleblowers come forward about the MMR vaccine in recent years.  Claims of scientific misconduct, a cover up at the CDC, and faked data surrounding the testing of the vaccine’s efficacy as well as the altering of reports concerning an autism link have been brought forward. 

While official action to address and correct those disturbing claims has yet to be taken, it appears to be business as usual for the vaccine manufacturer.  Some who’ve recently received the MMR vaccine, including college-aged students, have come down with, and spread, the disease that the vaccine claims to prevent.  Instead of scraping that ineffective vaccine, which officials admit seems to have a waning efficacy, there’s now talk of adding a third dose to the schedule.    

Speaking of dose changes, Merck’s Gardasil protocol has changed.  Originally approved and marketed to young girls in 2006, vaccine campaigns strongly advertised the need for 3 doses in order for it to be effective.  In late 2016, we learned that the third dose would be dropped from the protocol.    Citing that “they didn’t have enough data on how well two doses works in older kids,”  other groups must have had “enough data” well before the US did.  The too many doses too soon was reported elsewhere over 2 years ago. 

All that readily accessible and concerning information aside, some parents continue to follow the schedule.  That means they continue to opt for Merck’s other vaccines.  They do so even though those vaccines:

-contain the same ingredients

-are dosed at similar intervals

-are administered by same provider who’s likely assured them that vaccines are safe

-warn of similar side effects and adverse reactions https://www.fda.gov/downloads/BiologicsBloodVaccines/Vaccines/ApprovedProducts/UCM426457.pdf  

-and are also included on the Vaccine Injury Table

-and have been part of billions of dollars’ worth of vaccine injury awards  made by our government, the same government who, in one breath, claims vaccines save lives and yet in another, says that they are unavoidably unsafe. 

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Autism’s Super Heroes

CJ Giant
By Cathy Jameson

Thanks to my son, Willem,  for drawing this image of the Iron Giant for today’s post. 

“You are what you choose to be.”

Iron Giant

One of my daughters stayed home from school earlier this week due to an illness.  As hard as it was to see Izzy rundown and not feeling well, I welcomed the extra time that she and I got to spend together.  She’s my mini-me--creative, silly, and fiercely independent.  This week while not feeling like her usual perky self, I saw a different side of Izzy.  She was tired.  She was quiet.  She was reflective.  I enjoy her silliness, but I also loved the thoughts she shared with me this week while she was home.  

Without having to compete with the other typical siblings for my time, Izzy and I had some great conversations.  The neatest one was when she asked me, “Mom, who’s your favorite super hero?” 

“Ohhhh, good question, Iz!  Let me think…”

Thinking back to memories of watching Saturday morning cartoons, I immediately thought of the Super Friends from the Hall of Justice and Wonder Woman in particular.  I idolized her as a child.  With a golden lasso, an invisible jet and that snazzy red, white and blue get up she wore while fighting the bad guys, she was the epitome of super hero.  Now, as an adult, I appreciate Wonder Woman, but a different character came to mind the more I thought about Izzy’s question.

“If I had to pick just one, it would be Iron Man,” I told Izzy.  “No.  Wait.  I like the Iron Giant.” 

“Mom.  The Iron Giant?  Really?” Izzy asked.

“Yeah, Iron Giant,” I said.  “You know, from the movie??”

Looking at me skeptically while I continued, I said, “He may not be a DC Comic super hero, but remember he sacrificed himself to save the people and the town.  I’d say that takes guts.  And guts are what a super hero needs, especially when it’s up to them to help people and to protect them from danger.”    

“Welllll, yeah, I guess…,” Izzy answered.

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Best of: New Life New Hope

By Cathy JamPregnant happyeson

I know it wasn't too long ago that I shared this post, but I wanted to share it again today.  Five of our friends are due in the next few months.  Years ago, I never used to be nervous when people announced that they were having babies. I love new babies!  But now, with how many challenges new parents face - including being bombarded with an unnecessary vaccine minutes after baby arrives, nervous is the best word to use.  Two of our friends are having what I call organic babies though.  

What's an "organic" baby?  It's a baby whose parents are opting out of some of society's pre- and post-natal standards. That includes vaccines.  Having learned things the hard way the first time around with an older child, they care not to make the same mistake with Baby #2.  Empowered to create a healthier environment for the new bundle long before they're due, I'm not nervous at all hearing about their pregnancies.  I'm actually very excited!  I hope you are, too.

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The best things in life are unexpected…

Two of my friends are pregnant.  Both are in their 40s.  Both have a typical child.  Both also have a child on the spectrum.  Both have been enthusiastically congratulated.  I was happily shocked to learn of each of these pregnancies.  Then I was excited.  It’s almost as if these pregnancies are a first-time pregnancy.  With all that these Moms have already gone through, they sort of are first-time pregnancies.

No longer will Mom be timid about what typically happens in a regular OB office. 

She is so much more informed!

No longer will Mom let one person dictate all that she must do. 

She knows she has other options!

No longer will Mom allow a medical professional trump her mother’s intuition. 

She now has experience, knowledge and confidence on her side!

In each case, Mom knows so much more.  She knows how to ask for certain things.  She also knows how to politely yet firmly decline others.  Mom wants so many things to be different and better.  Yes, better.  Better for her and better for her unborn child.

Part of me is worried for my friends.  Being pregnant now, compared to ten or fifteen years ago when youth was on their side, will surely be different.  According to literature, they’re OLD.  Old means tired, exhausted, fragile.  But, knowing these women and their personalities, old is just an adjective, and would never be the first one I’d use to describe them. 

Both Moms are active in their other children’s lives.  They are both movers and shakers in their own communities.  They are both looked up to, respected and sought out for advice.  Who better than an already inspiring woman to bring new life…and hope to our world.

Sure, I’m a little worried for my friends, but I’m downright giddy that these two women are pregnant.  I’m more excited for these pregnancies than other.  They will be far different than that of the younger people in my life.  The younger people are having their first and second children and are clinging to every word, statistic and procedure their medical provider tells them.  Then, their children are taken to every appointment that the powers that be have dictated.  When pictures are shared, I see darkened circles under baby’s eyes and hear of food allergies, eczema, early speech problems and endless sleepless nights.  Red flags are waving violently behind baby but Mom has yet to connect the dots or see the destructive path her children are walking. 

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Family Matters

RFK 100KBy Cathy Jameson

What a week it’s been!  Press conferences, legislative meetings, and a $100,000  challenge - if you missed the latest vaccine/mercury news, catch up here.

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The World Mercury Project team, as well as several members from Health Choice, did quite a bit of advocating in The District last week.  Hoping to be at a few of the events, I began to make preparations to join the effort.  Quickly glancing at our family calendar, I checked to make sure I wouldn’t have any conflicts.  Nothing was pressing.  With the kids in school and with Ronan’s team available to be work with him in my absence, I could go.  I was excited.  It had been awhile since I’d gone to D.C.   


The closer it got to the date, though, the less likely it was going to work out for me to be there.  I wanted to be with my friends and with the groups fighting for children like mine, but new family commitments that I could not afford to miss cropped up.  Brainstorming how to work things out, I tried to rearrange a few appointments.  No luck.  Unless I could bi-locate, it was not looking good for me to be in D.C.  I had to make a decision.  Was where I wanted to be more important than where I needed to be?  I knew the answer, but I stayed hopeful that something in our schedule would give.  It didn’t.  I sent regrets rather than confirm a reservation.    

Over the course of the few days that Robert F. Kennedy, Jr. and Robert DeNiro were making headlines, I popped in on FaceBook and other social media outlets when I could.  Friends were checking in and sharing details of what they were doing and with whom they were speaking.  Posting pictures of the exciting events, I lived vicariously through their updates. 

Scrolling through the newsfeed in the waiting room at the eye clinic on Wednesday afternoon, my youngest said to me, “Mommy, who are those people in the pictures?” 

I replied, “Oh, those are friends of mine.  They’re in Washington, D.C. right now doing some really neat things.”

“In D.C.?  Weren’t you supposed to be there?” she asked.

“Yep.  I was,” I said as we scrolled through a few more pictures.

“But you’re here…” she started.

“I am here,” I smile, “I get to be with you today instead.  Your new glasses were ready today, and I wouldn’t want to miss that,” I told her.

“I wouldn’t want you to miss it either,” she smiled back.

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Autism’s Three Up/Three Down

All threeBy Cathy Jameson

When everyone is home and no one has to run out to a meeting or a sports event, we sit and eat as a family around 6pm.  That includes Ronan.  It’s taken quite of bit of work to have Ronan join us at dinnertime.  It’s not that he’s physically unable to join us.  He’s more than capable of sitting and eating at the table.  It’s just that sometimes, he’d just rather do his own thing than sit and hang out with us. 

Lately, with tons of work and with lots of encouragement, Ronan has not only joined us at the table, but he’s stayed for the entire meal, too!  He’s still non-verbal and doesn’t join in on the conversations yet, but he’s present for all the chatter, laughter, and silliness that our family dinners typically include. 

It’s been a real treat to have all 7 of us at the table.  While we’re gathered, my husband asks the kids how their day was.  A few weeks ago, he got creative and asked them for 3 Up/3 Down—tell us 3 positives and 3 negatives (or 3 challenges) you’ve faced that day.  From our teenager on down to our youngest, it’s been interesting to hear what’s a positive—a good grade, talking to a friend, or seeing Mommy at school for recess duty, and what’s a negative—studying for an exam, getting an owie, or thinking about Daddy’s upcoming business trip.  The kids’ convos have always been lively, but with these nightly 3 Up/3 Down prompts, we’re hearing more details about their day. 

The week before last, Ronan’s little sister, Izzy, wasn’t feeling good.  Unable to make it to school, she stayed home and rested.  While home, she got a peek at Ronan’s daily activities.  She also got a peek at the many challenges he faces, including ones that cropped up during his therapy session with our in-home therapists that morning.  That night at dinner, Izzy’s 3 Ups were about staying home from school, getting to see Mommy all day, and having time to hang out with Ronan.  Happy to hear positives even though she was still sick, I smiled.  I smiled until I heard her third down.  Her demeanor had changed by the time she’d gotten to it, and I could tell she’d been thinking about it all day, “He works really hard, but Ronan still can’t have a conversation with us.”  With a lump in my throat, I had a tough time swallowing the bite of food I’d just taken.

Since she wasn’t yet ready to go back to school, Izzy stayed home again the next day.  I asked her, “Izbiz, remember when you told us your 3 Downs last night and you talked about Ronan?  Can you tell me more about it?”  She said sure. 

She gave me a hug then started, “It’s kind of upsetting that Ronan doesn’t get to move around as much as we do.  He plays around on screens (Wii and Subway Surfer), which is fine because it makes him happy, but he doesn’t get to talk with us or join in our play – especially in our laughing moments.  I want him to join in with us.  But he can’t...”

Pausing, Izzy thought for a moment but didn’t continue.  I said, “It stinks, I know.  Can you tell me things Ronan can do?  I know you saw him do tons of stuff while you were home yesterday, things you don’t normally get to see because you’re at school.” 

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Autism’s Brotherly Love

BI_love_my_brother.gif_320_320_256_9223372036854775000_0_1_0y Cathy Jameson

Thursday evening was not a fun evening.  Ronan began to have seizures right before dinner.  As the night progressed, they grew in intensity and then in frequency.  Coming one right after, I didn’t have to tell the kids Ronan was under seizure watch.  They’d observed the tell-tale signs themselves.  Ronan kept dropping things.  He kept tripping over himself.  He kept having erratic arm and leg movements.  Ronan caught a little break after dinner, but with how many seizures he’d had, and with how quickly they would start back up, I had an awful feeling that we’d have to resort to using emergency meds. 

Seizures terrify me.  I know they terrify Ronan’s siblings as well.  During situations like this, my typical children worry.  I don’t blame them.  Watching Ronan’s body be wracked as it is isn’t an easy thing to observe.  Desperate to make them stop, but feeling absolutely helpless, the siblings start to pray when he’s has multiple seizures like he did Thursday night.  Sometimes, they pray together. 

Mommy, I don’t know what to say…except maybe asking God to heal him? Yes, honey. Ask that.  

Dear God, please help Ronan. 

Lord, make them stop.  Please. This isn’t fair.

Their innocence, as well as the mountain of faith they possess, carry them through these scary moments.  Where I feel like I’m about to crumble on the floor in a heap, the siblings do everything they can to stay brave.  I try my best to not let them see how worried I am because they need my reassurance that things will get better.  Things usually do get better, but on Thursday night, things would go downhill first. 

As the seizures ramped up, my husband tended to Ronan so I could talk to the others.  Barking orders, I told them to get themselves ready for bedtime. They each had a few things to do before we’d start family prayers and before I had to make the decision to give Ronan the meds or not. 

Shower. 

Brush teeth. 

Get jammies on. 

Now. 

Move.    

I felt like a mean ol’ mom, but each of my children understands that in these moments, ones we wished would never happen but do, Ronan has to come first.

Within minutes, they were ready.  In that same amount of time, though, Ronan had had three more seizures.  It was time to prep the meds.  Ronan’s little brother could not hide the fact that he was crushed when I told him.  Trying to be upbeat he replied, “Okay, Mommy.”  Without hesitating, he added, “Do you need help?”

“Yes, actually, I do,” I let him know. 

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Age of Autism’s Dan Olmsted – A Fine and Noble Man

AofA candles
By Cathy Jameson

Kids are like a litmus test.  If someone is a good person, they know it instantly.  If someone is a bad person, they know it even quicker.  My children got to meet Dan Olmsted a few years ago.  They knew immediately that he was more than just a good person; he was a fine and noble man. 

My children were as upset as my husband and I were when we got the news that a friend passed away.  My youngest cried and cried.  I did, too.  I have a few pictures of Dan at conferences and advocacy events, but the one I have of him with some of my crew is one of my favorites.  In it, my oldest is beaming.  She’s smiling because she knew just how amazing a human being Dan Olmsted was. 

Dan always made himself available, even when I had kids in tow.  I love that my children enjoyed Dan and FionaDan's company just as much as I did.  Their favorite memory is of us having breakfast with him at a little diner.  Full of excitement because they were finally going to meet Mommy's writing friend, the kids were beyond goofy that morning.  Not only that, they were excessively chatty, too.  I kept trying to hush them as we prepared to eat, but Dan was not bothered by their excitement nor by their extra chattiness.  He smiled so kindly enjoying the kids and their happiness.

While listening to them be so silly that morning, I smiled back at a man who exuded only peace.  Letting myself relax so I could soak in the moment, I realized just how big this moment was for my children - they were meeting one of my heroes live and in person...and were getting to eat breakfast with him, too!  It’s something that they won’t forget.  It's something that I'll never forget either.  

I'm honored that Dan generously gave so much of himself to me over the years - the helpful emails, the hopeful private messages, the countless positive and uplifting comments - he was so generous.  What struck me this week as I reread all of those exchanges is that no matter what we were talking about--be it Ronan, my family, autism, advocacy, upcoming legislation, or just life in general--Dan was always present.  In each and every communication we had, both in person and online, he was present.  He connected with me as if I were the most important person in the world to him. 

I am a better person because of my friend, and I know that my children are as well.  Always calm, always encouraging, and always so very thoughtful, Dan was, and will forever remain, a big part of our family's life.  I know that to be true for countless other families.  Dan opened a door.  He set the stage.  Then he gave us the platform.  He started a conversation about autism, even though he didn’t have to, he continued it.  Not only that, he gave us confidence to chime in and to always bravely speak our minds. 

Dan inspired.  He believed.  And he created community.  I hate that we have some last words from him, but those last words were*: 

Rebel Alliance, unite! 

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Vaccine Concerns: It Isn’t Just About Autism

Trust yourselfBy Cathy Jameson

I can’t remember which news story it was that I was listening to, but the line “…vaccines don’t cause autism…” was said.  As if that wasn’t enough, the speaker made sure to add that the measles (MMR) vaccine most certainly does not cause autism either.  Rolling my eyes, I turned the radio station. 

Please, I thought to myself.  Do yourself a favor and get some new lines.  This “vaccines don’t cause autism” bit isn’t the sole reason young parents are questioning vaccines today.  Other reasons exist, too.

Parents are concerned about vaccine ingredients like aluminum, formaldehyde, and human diploid cells.  They are concerned about side effects like seizures, allergic reactions, and anaphylaxis.  Some are also not too keen on how their doctor downplays and even dismisses their apprehension.  Instead of addressing the valid concerns, doctors demand that parents follow the full vaccine schedule.  If they don’t, or if they ask to delay the shots?  They’re “fired”.  No longer welcomed in the practice, the parent is forced to leave and left to find answers on their own. 

Thankfully, with so many resources literally at their fingertips, someone who’s been dismissed by a doctor can educate themselves on vaccines elsewhere.  They can look through medical books at the library, they can read about those worrisome vaccine ingredients online, they can seek help from another more open-minded provider, and they can join parenting message boards as well.  The topics that come up the most on the message boards I’m on tend to be about children’s health and how to navigate vaccines.  Since I have been open about my child’s vaccine injury, young mamas seek me out when vaccines come up in online conversations on those boards. 

As a new parent, these young moms want to do the right thing.  They want the best for the child.  They want to know that they’ve made good choices.  That can be hard to do when they hear similar messages like the one I heard on the radio.  From their doctor, from the school nurse, and from mainstream news, it’s all from the same memo:

Silly parents, vaccines don’t cause autism.  They save lives!  Now go out and get them…all of them.  You’ll be fine.  Trust us. 

As a young mom myself, I trusted.  But not for the right reasons.  It was only after my son fell sick did I think to invest my own time in the vaccination process.  Sadly, I didn’t comprehend it fully until after I witnessed real-life events, like seizures, loss of gained skills and autism, all of which followed my son’s vaccinations.  It had already started to diminish, but by then, the trust that I had for my doctor, for that school nurse, and for the media was completely broken. 

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Best of: Only In My Dreams

Beautiful dreamsRonan's been popping up in his siblings' dreams lately. He was in some of my recent dreams, too.  Each of us have seen Ronan playing, interacting appropriately, looking genuinely happy and also talking.  Since those dreams mirror our everyday hopes, I thought I'd share an older piece today.  It's about one of the first dreams I had about Ronan after he got sick.  In it, he spoke. He spoke clearly, and he spoke confidently.  It's been a long time since I've heard his voice, but someday, I hope that I can hear my son speak again.   Enjoy this "best of" post.

By Cathy Jameson

Does it count if my non-verbal son spoke in my dream?  Does it count if I asked him to repeat the sentence to make sure it wasn’t a fluke and he did?  I don’t know what it meant, but Ronan said to me, “I saw the white car going down the road at 15 miles per hour.”  He said it twice.  He said it to me while looking me straight in the eyes. He said it to me like any typical 4-year old would.  He said it.  Then, I woke up.

This is not the first dream I’ve had about Ronan using his words. I asked God one day if I could please just have a sign that we were doing the right thing by walking down the biomedical road with all the supplements, all the doctor visits and all the research it was going to take to heal Ronan’s body.  That night, I had a dream that Ronan spoke. I was holding him on my hip as I would hold any typical kid of mine.  That was the first sign that things were hopefully getting better—Ronan’s sensory issues would never allow for that kind of snuggle. 

Back to the dream, Ronan and I were walking down a beautiful dirt path near the Potomac River that I have only walked down once before in my life.  I looked at Ronan and said, “Ronan, can you say Mommy?”  He said Mommy.  I kept on walking, “Ronan, can you say Daddy?”  He said Daddy.  I know I had to try to trick him since these were words that any typical kid should say.  I then looked at Ronan while we were walking under the tree branches that met over the middle of the road with the sunlight filtering in and said, “Ronan, can you say chocolate chip cookie?”  Well, the sweet little boy said chocolate chip cookie just as plain as day.  I know we kept walking down the road a bit more and then I woke up. 

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When Autism Crosses the Line

Ronan bowling
By Cathy Jameson

I shared this photo (above) and short story with family and friends while we were on our Christmas vacation:

At Ronan's happy place.

He was so happy, so very happy.

I was, too.

Until he crossed the foul line.

When Ronan's gutter ball didn't knock down any of the pins, he decided to go knock down the pins himself. I booked it down the lane after him. But dang, those bowling alley lanes are so slippery.

Down I went.

Ronan kept going as fast as his ataxic, neuropathic little legs could move him with my husband scrambling not too far behind.

Ronan made it to the pins before I could get up and before either one of us could reach him.  He knocked two pins over, and before Daddy reached him, down the sweeper bar came right next to his head. Oof.

But Ronan was happy. And sometimes, even though you've left your ego (and a few tears) on the slick floor, it's okay.

Ronan 2
Cat 0
Hearts still full 

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Ronan bowling 2When we arrived at the bowling alley earlier that day, I made a point that morning to not tell the manager about Ronan.  I don’t always do that.  Since he looks typical, I’ll sometimes give a manager a heads up:  This is Ronan.  He has autism.  If we need to cut things short, or if we need some extra assistance, we’ll let you know.  That day, I opted to not say anything about my son or about autism.  Confident that he’d love every minute of our fun day out, I was sure Ronan would do well.  He did great just two weeks prior at a bowling alley not too far from our home, so I expected a repeat that morning.  I was sorely disappointed. 

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Tell Your (Autism) Story

Autism Reality
By Cathy Jameson

I came across a headline last week that caught my eye.  From a magazine that I no longer subscribe to, but happened to get an email from in my spam folder, the headline said, Tell Us Your Story—2017 Neuro Film Festival Now Accepting Submissions.” 

We know you have a story to tell … and we want to hear it!


  Neuro Film Festival

Even with how many times I’ve told it over the years, telling our story isn’t an easy task.  It comes with admitting that I did things the wrong way.  It comes with reliving a painful past. 

Is [your story] about yourself, or a loved one?

My story is about a very much loved son, Ronan. In sharing his story, it requires sharing intimate details of a decisions that ended up hurting him.  Despite all that, I tell our story whenever I can. 

Do you want to help raise awareness of and funding for critical brain disease research?

As painful as it would be to share it again, I’d love nothing more than for the video judges from the contest’s sponsor, the American Association of Neurology, to know exactly what happened to my typically developing child and the neurological damage he has suffered.

Continue reading "Tell Your (Autism) Story" »


With Autism, Grace Abounds

Hope love peaceBy Cathy Jameson

With Ronan’s needs and with my husband’s busy work schedule keeping him busy, it isn’t easy for us to go out of town.  Since we need a break from life’s demands every now and then though, we do make sure to get away when we can.  We managed to do that over the summer.  That trip, which couldn’t have been more perfectly timed, was a godsend.  Having the chance to go back home, to catch up with friends, and to be back by the ocean where we all thrive, filled our souls with hope. 

Since I didn’t know when we’d have time to repeat that sort of respite we so desperately needed, I held onto the memories from that last trip.  Sure, there were moments of stress while we were far from home – regressive non-verbal and sometimes aggressive autism is still regressive non-verbal and sometimes aggressive autism no matter where we are, but we experienced more moments of peace than moments of frustration. 

That peace brought hope.  That hope brought a sense of calm.  That calmness, manifested both physically and mentally, gave me strength.  As strong as I may seem to some people, I need encouragement to keep my chin up and to keep going forward. 

Even though vacation can be stressful – the planning, the traveling, the new surroundings, the unpredictable behaviors – the positives that come from being able to walk away from the daily grind far outweigh the potential negatives.  Remembering just how many positives we all experienced the last time we took a vacation, when I realized that we might be able to get away for Christmas, I welcomed the chance to do just that. 

Not only did we get the chance to tiptoe out of town, we ended up at the beach again.  It wasn’t the same beach that we went to last summer, but we breathed in that same ocean air.  We felt that same ocean breeze.  We enjoyed that same sound that the crashing waves make that I love to hear.  That was all the same, but something was different.  We were surrounded by family at this beach, family who want nothing more than for us to be able to stop, to rest, and to just be. 

To just be. 

That isn’t always a possibility with life with regressive autism, but with more hands on deck to help us keep Ronan happy, safe and cared for, we could just be, and we did get the respite we so desperately needed.  I know that other families will not be so fortunate.  This weekend, parents were left to manage their child’s aggression on their own.  They were left to handle the self-injurious behaviors on their own.  They were left to find respite through an agency instead of with a relative.  It’s got to hurt when family doesn’t pitch in.  Some family members may not recognize just how intense raising a child with autism really is, but for those who do and who refuse to lend a hand add to an already heavy burden.

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Autism’s What If

Jamesons
By  Cathy Jameson

Each night before the kids’ bedtime, we gather in Ronan’s room to say family prayers.  We go around individually with our own prayer requests.  The kids have had the same general prayer request for years:  for Ronan to be able to communicate.  Over time, that simple request has evolved.  They now have more specific intentions:  for Ronan to get his words back, for him to use his words, for him to be able to verbally communicate, and for him to have a meaningful verbal conversation with us.  Since Ronan had speech at one point in his life, we remain hopeful that it will one day return. 

Bedtime should be quiet time but it actually turns into the best time for the kids to communicate with their non-verbal brother.  Before the whole family has pig-piled into Ronan’s room to start prayers, he gets some one-on-one time with a sibling.  Sometimes it’s Fiona who joins him.  Other times it’s Willem.  Lots of times it’s his silly little sisters.  No matter who has a few quiet minutes before we gather at the end the day, I always hear one of the sibs ask Ronan to say something. 

Hey, Rone.  Can you say shapes?  Try it.  S-h-a-p-e-s…

I’ll sing the song but you say the word that’s missing. Ready?  I’m bringing home a baby bumble---

I found one of your favorite pages!  Say it with me, “And our fish said ‘No, no’…make that Cat go away...tell that Cat in the Hat you do not want to play…”

When he hears his favorite words being said, sung and signed by the siblings, Ronan’s eyes light up.  His interactions improve.  His verbal output attempts increase.  Squeals are squealed, and hope is restored. 

Using words or phrases from his favorite books, movies, or songs, instead of winding down for the day, everyone gets a little jacked up.  Despite how exhausted I am and how much I’d like their day to end so I can catch up on whatever I need to do, I never stop their activity.  Ronan feeds on the kids’ positive energy and communicates more in the ten minutes prior to bedtime than he’s done all day. 

When they finally do slow down for the day, the other kids gush all over that brother of theirs.  That isn’t the only time they show him any attention or affection, but it’s the time of the day that they give him all of their attention all at once.  My typical kids are active.  They love to play, run around, play, swing, play, do arts and crafts, and play.  It’s rare to see them quietly sitting still.  Ronan, on the other hand, is a couch potato.  He’d rather play Wii.  He’d rather watch YouTube videos.  He’d rather play a game on his iPad.  Trying to interact with him while he’s engaged in his preferred activities doesn’t work out so well.  We do curb screen time to make sure Ronan gets regular play time opportunities, but his underdeveloped social skills prevent him from wanting to join in on the playtime my other kids crave.  I know it’s hard for the siblings when Ronan ignores their requests to join them, but they don’t stop asking him to play.  The other night at the end of prayer time, though, I could tell that one of the siblings was getting a little frustrated.  The frustration was not toward Ronan but with why it’s sometimes hard for him to do things that she, the younger sister, can do so easily. 

Waiting until the other kids had skipped off to bed, Izzy crawled under the covers with Ronan.  I’m going to snuggle here with you, Ronan,” she said as she cozied up next to her brother.  Laying quietly next to Ronan under his favorite blankie, I could tell that she had something on her mind. 

“Mommy?” Izzy started. 

“Yes, sweetie?” I replied.

“Mommy, what if Ronan hadn’t ever gotten the flu shot?” Izzy asked.

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On This Day With Autism

On This DayBy Cathy Jameson

I am really loving Facebook’s On This Day feature.  When I click on it, I get to see posts I’ve shared from previous years.  Since I’ve been on FB for almost ten years now, I have gotten to see tons of memories!  I clearly remember some of them – birthdays, major milestones, and favorite photos of the kids.  Every now and then, I see something that I don’t recall sharing.  Like this status and link that I posted three years ago last week:

Ronan's choice of songs tonight.  Little dude's music is amazing.

I don’t know how he did it, but he found that song.  He played it on his iPad and left it where I could hear it.  I was floored. 

I Will Always – by The Cranberries

And now it's all the same to me

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Autism, It Changed Everything

ChangesBy Cathy Jameson

My son doesn’t have the kind of autism that’s featured as a ‘feel good’ story at the end of a nightly news segment.  He has is the regressive non-verbal kind.  Completely dependent, Ronan requires constant monitoring and specialized care.  That’s because the type of autism he has came with seizures and a host of medical issues.  Those medical issues have contributed to developmental and cognitive delays.  He’s in a good place now, but I don’t know if his health will bounce back to what it was before he got sick. 

Ronan’s healthier baby days are long gone, but the hope I have for this child of mine has not diminished.  With all of the setbacks he and I’ve had over the years, and there have been quite a few, you’d think that hope would be the last thing I hold onto.  Who holds onto that for as long as I have?  I’ve faced more traumatic moments in Ronan’s short 13 years of life than I ever expected to as a parent.  From 911 calls, to emergency room runs, to battling doctors, and to unfortunate moments of panic due to Ronan’s wandering, being the parent of a child with severe autism hasn’t been easy.  But with help from devoted family and friends, as well as with a lot of faith and a never-quit attitude, I keep going. 

Consciously putting one foot in front of the other – even though on some days it would be easier to give up, I walk this autism parenting path hoping and praying that I was doing the right thing for my son.  I haven’t always made the best decisions for Ronan in the past and am reminded of that every day.  But if I dwell on that too long, we both suffer.  So instead, I keep my chin up and focus on what I can do right now. 

I’ve done a lot for my child as have many other parents with children like him.  It sometimes may not feel like enough has been done to stop the autism epidemic, but together, we’ve moved mountains.  Late last week, I was reminded of something our community did four years ago.  Do you remember it?  It was kind of a big deal.  On the morning of November 29th, we got Congress to talk about autism.  Not only that, they talked about autism and vaccines.  They even dared to link the two together.  They talked about that link all day long and aired their conversation for others to hear it, too.  

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Vaccines: It’s Up to You

Risk Demands Choice Age of Autism Vaccine MandatesBy Cathy Jameson

A few weeks ago, I shared part of an online conversation I had about vaccines.  Initially, I was hesitant to reply but after rereading a callous response made by a woman I’d never met, I needed say something.  Demanding that everyone should be vaccinated no matter what, I thought I might offer this person a bit caution in making such broad and ignorant demands. 

I challenged her.  In reply, she challenged me. 

Several hours one evening, we went back and forth with a mostly polite verbal vaccine volley.  She regurgitated typical propaganda while I went deeper sharing some actual vaccine experience.  I could’ve walked away at any point of the conversation.  I own nothing to this person, but with how condescending this gal was, I wasn’t ready to let her have the last word.  I’m glad I didn’t.  The next day, other parents who’d been reading the thread chimed in.  Some were as knowledgeable as I am about vaccine injury and offered their input.  As that weekend wrapped up so did the conversation.

Thinking the convo was completely over, I woke up a few days later to a notification showing that things had picked back up.  The lady who made the callous remark came back trying to give us vaccine hesitant parents a what for.  She was adamant in that there should be some sort of punishment, like a fine, for anyone who willingly declined vaccines. 

Oh, boy. 

I got ready for Round 2.

I had stuck to basic vaccine facts in the original replies, but decided to share more personal information that day.  I let her know that both my boys were vaccine injured.  That happened after both my boys received the recommended vaccines.  One on my boys received the full series while the other did not.  The one who got all the shots didn’t fare well at all.  As a result of his vaccines, he’s got seizures, a severe speech delay, and regressive autism.  I shared that what killed me most is that those shots did nothing for him.  None of them gave him any immunity for the diseases the vaccines would supposedly prevent.  I added that for her to come in again guns-a-blazing demanding that all people be fully vaccinated is absolutely ludicrous.  And downright rude. 

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Vaccines: Got Yours?

Share secretBy Cathy Jameson   

I was tagged in a Facebook post last week.  In the post was a link for an article about the Commonwealth of Virginia’s religious exemption.  The religious exemption, for now, is safe.  With how California managed to take parents’ rights away, I celebrated the victory.  A woman who saw the post did not. 

I’m not shocked.  Not everyone believes in vaccine choice.  This woman in particular very clearly did not.  Her first comment was not only ignorant but also showed how insensitive she was.  Without considering an individual’s medical history or respecting that a person’s religious belief can influences healthcare decisions, she said that the unvaccinated should be denied services from doctors, public health and from schools.  She added that to be unvaccinated goes against the greater good and that in order to be able to mingle and interact in public, people should be vaccinated.  To not be vaccinated is selfish. 

I didn’t know who this person was at all besides that she is a friend of my friend, so I debated whether or not to reply.  I could not let her grand and demanding statements be the last ones on the thread, so I chimed in.  I said, Well, thank God some of them don’t (deny services)!  Thank God for doctors, health officials, and schools who are open-minded and more understanding that for some people – children and adults – cannot be vaccinated for either health reasons, personal reasons, or religious reasons.  If you want to be vaccinated, go for it.  No one is stopping you.  But for those who have serious reservations about them or who have had serious reactions from vaccines (like my family members have), having the freedom to choose is a welcomed option.

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Tis the Season to Say No to a Flu Shot

Flu shot gift
By Cathy Jameson

Twice in the last month I've been asked if I wanted the flu shot.  The first time I was asked, the nurse was a bit hesitant, "Now, I know you usually decline it, but I'm obligated to ask...do you want a flu shot this year?"  Just like last year, and every year since Ronan's health took a nose dive, I gave her the same reply, "Nope.  All set.  Thanks."  

This nurse, who happens to be one of our favorites, looked up from the computer and apologized for asking, "I'm so sorry to have to ask you that.  You know I respect your decision, but I can't get to the next screen without answering this prompt..."  I thanked her.  Other nurses have not been so kind, so I smiled and said, "I understand.  Ronan doesn’t need a flu shot today, thank you."

Years ago, I wouldn’t have been so calm.  Being asked if I wanted that shot used to make me really upset.  I’d still be polite in my reply, but deep down, I was boiling.    

Didn't they know that was one of the worst shots Ronan ever got?  

Didn't they remember how awful things got soon after for him?  

Can't they see that we're still dealing with the side effects from the last time he got that shot?  

Of course they could see!  Most of the time, though, their hands are tied.  The nurse or whoever’s checking Ronan into the system is following orders from their employer.  Thankfully, this nurse knows us well enough to not push us.  That’s why when the flu shot was brought up in that appointment, like I knew it would, I was able to let the question she must ask go in one ear and out the other. 

Unless I continue the conversation and offer why I’m saying ‘thanks but no thanks’, newer medical providers we sometimes need to see will never fully understand why we’ll never opt for that shot again.  So when I was asked the second time in recent weeks if we’d like a flu shot, I let the new nurse we’d just met know why I was saying no. 

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Review of An Unfortunate Coincidence: A Mother’s Life Inside the Autism Controversy

An Unfortunate CoincidenceBy Cathy Jameson

 Soon after starting her book, I sent an email to Julie Obradovic:

I'm in tears and enraged and on the edge of my seat reading your book. It's taken a few sittings to get any reading done (things are insanely busy here), but wow.  I cannot stop reading.  

About a month earlier, Julie had asked me if I might be interested in writing a review of her soon-to-be released book, An Unfortunate Coincidence: A Mother’s Life Inside the Autism Controversy.  Thrilled to be asked, I couldn’t wait to read it and tell her what I thought of it. 

I remember the day that Julie told me she’d gotten a book deal – I’m sure Julie was very excited, but I was over the moon ecstatic!  Always an eloquent writer, I couldn’t wait to read more of what she had to share.  Now that it was time to finally read it, getting through Julie’s book in one sitting just wasn’t happening.  With all the demands being placed on me at home, I knew that I’d have to go elsewhere to concentrate.

Setting aside several hours one day, I headed to the library.  I found a quiet corner and continued to read.  Not intending to put the book down, I’d only gotten a few more pages read when I took a break.  I sent another email to Julie sharing how difficult it was for me to read her story:  

I want to stop.  This is truly painful for me to read because your story is so eerily similar, like almost exactly the same medical timeline of medical issues and the autism discovery - not to mention the same type of dismissive doctors and the anxiety and the feeling like you're in the Twilight Zone - it is so hard to read.  But I'm pushing some emotions aside and will continue, not just to get the review done, but also because I want to know more.  I know what you've written will help so many. 

No doubt that it will.  No doubt that it already has!  

Continue reading "Review of An Unfortunate Coincidence: A Mother’s Life Inside the Autism Controversy" »


When Autism Finds a Friend

Gentle touchBy Cathy Jameson

Thanks to some generous souls who are helping us with Ronan this year, I have had the pleasure of volunteering time at my kids’ school.  I’ve also been able to volunteer some time afterschool with some activities my kids are in, too.  It’s taken a long time for that to happen, but I’m grateful for every minute I get to do this.   

Twice now, I’ve been able to help drive some of the soccer team to their away games.  For the first outing I drove my son, Willem, and 3 of his teammates.  Each of the boys knew of Ronan and had briefly met him before, but it would be the first time they’d be in the car with Ronan.  It would also be the first time they spent any length of time with him beyond sharing a quick hello. 

As the boys loaded their bags in the trunk, I took Willem aside and said quietly, “Why don’t you sit next to Ronan just in case he…”

Willem quickly said, “Don’t worry, Mom,” and added, “I was going to.”

One teammate, who also happens to also be one of Willem’s favorite friends as well as a classmate, overheard us and said, “Why can’t I sit next to Ronan?”  Before I could answer him, he got in the car and buckled up right next to Ronan’s seat.

“Well, he might…” I started, “…he might reach for your hand.  And sometimes it hurts when he does that.  And if I’m driving, I can’t help get his hand loose from yours…” I explained.

The classmate looked at me, looked at Ronan and then said, “It’ll be okay.”  Looking at Ronan again, he tried to engage him, “Hey, Ronan!  Remember me?” 

With a smile, Willem’s classmate looked back and me and said, “Okay.  I’m ready.” 

Somewhat nervous as we had an almost 30-minute ride to the field, when I saw the boy’s smile I let go of my anxiety.  His positivity was a good sign and exactly what I needed. 

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Best of: No Greater Joy

Got-joyCathy has the day off. Enjoy this Best Of post from October, 2014.  We could use some joy!

By  Cathy Jameson

I met a young woman at a car dealership just about two years ago. I was there to get an oil change.  She and her family were car shopping.  Sitting in the child play area with two of my kids, the young woman parked her stroller opposite of where we were sitting and unbuckled her boys.  She got her toddler and baby settled with some toys while her husband remained with a sales clerk to discuss cars.

I stole a few glances at the woman.  She was pregnant.  Trying to calculate her boys' ages, I thought to myself, Wow, soon to be three kids under the age of three.  Just like I had. 

Thinking back to my early days of parenting, I remembered how busy I was.  How tiring it was.  And sometimes how old I felt.  This woman so young.  She too so busy.  But she didn’t have time to be tired.  She was keeping tabs on her boys and sat down with them when they sat to play.  She jumped up when one scooted off to a different corner of the room.  She also stayed one step ahead of her other son he wanted to explore what lay beyond the play area. 

The older boy reminded me of my brother when my brother was a baby—tan skin, curls, deliciously round cheeks.  And happy.  Her older son was so happy.  I found myself giggling as I watched him. 

The young woman and I made eye contact and said a polite hello.  She tried to apologize for how quickly her boys took over the play area.  I told her not to worry. I had five kids, also close in age.  Her sons were a delight and certainly not a bother.  I picked up a magazine but continued to steal glances of her children as I read.  I was drawn to them. 

The oil change was taking longer than usual. The automotive rep came over and apologized for how long things were taking.  He added that it would be a little bit longer.  I didn't mind.  In fact, I was glad to have a reason to stick around.  I felt an overwhelming urge to talk to the young mom.  I get that feeling every now and then, that I'm in the right place at the right time.  But it’s not for my benefit; it’s tends to be someone else's. 

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Autism’s Grip on the Siblings

SISTERSBy Cathy Jameson

Once a week, I drive my oldest daughter’s morning carpool group to school.  For the last few weeks, though, the entire crew hasn’t been with us.  Several of the students have had before-school activities, so it’s been just Fiona and another young teen in the car every Tuesday morning.  I miss the teenage banter of the other kids and the camaraderie this particular group shares, but I’ve cherish the time I get with Fiona as she fills me in on what’s going on in her life.   

The last time I had just Fiona and the one other classmate in the car, I started our Tuesday-morning conversation asking my daughter about the usual topics.  That included getting updates on her classes, asking how her friends are doing, and getting the scoop on the latest volleyball skills she’s been working on. 

On these mornings, Fiona asks for updates, too.  Missing her siblings something fierce due to several late-night volleyball games, she fondly asks how each of the kids are doing. 

Worried about Ronan, who’s been having some odd eye issues (that we recently discovered were seizure related), I give Fiona updates on how Ronan was feeling and filled her in on some funny sibling stories I’d been saving to share with her.  Making her laugh, but also making her miss the kids even more, the last time I drove her to school, I reached for Fiona’s hand and held it.  Squeezing it before letting go, I said, “The kids miss you so much, too.  Things will slow down soon, honey.  Let’s just get through this busy week and do something fun with the family this weekend, okay?” 

She smiled and quietly nodded.  Thinking we’d go back to some lighter-hearted topics, Fiona wasn’t done asking questions.  I’m not sure how long she’s been wondering about it, but words cannot fully describe the shock that went through me as she asked the next question. 

“Mom, when I get married and have a baby, do you think if I have a boy he’d have autism like Ronan?”

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Braving the Storm

StormBy Cathy Jameson

Thunder, lightning, rain, flash flooding, and damaging winds.  We’ve had some wild weather lately.  For the last 3 days, storms came in the middle of the night.  Some stuck around for the morning.  Causing delays, cancellations and major headaches for a lot of people, I was glad to see them finally go. 

Thankfully, during the last few days that saw storm after storm after storm, we never lost power.  Friends elsewhere shared that they, too, recently experienced some wild weather.  They weren’t so lucky.  They lost power for 3 days.  Should we ever find ourselves in the same predicament we have a generator if the lights ever dimmed. 

Reading my friend’s updates, that included having to pull out their hurricane storm box, reminded me just how unpredictable life can be.  The updates also reminded me that we have not replenished contents in our own storm box for quite some time.  From what I remember, we only had the basics in it.  Food.  Diapers.  A flash light.  Batteries.  The last time I remember prepping the box, Ronan was much younger.  Surely the diapers I had set aside would be too small.  Food, even though non-perishable, would have expired.  Same with the batteries.  After last week’s weather, it was time for me to make time to go through our emergency supplies again. 

I don’t like Just In Case moments, but just in case we needed to dip into our emergency supplies, I needed to take time to make sure whatever was in the storm box would actually provide support.

What would I need if we lost power for 24 – 36 hours?

What if it extended 3 – 5 days?  Could would we survive?

Going 3 days without electricity.  We’ve experienced that before, and it is not easy.  It isn’t just losing luxuries like access to refrigerated foods or being able to cook for our family of 7.  It’s keeping the temperature in our house safe for Ronan.  Since he’s unable to regulate his temperature, we must make sure that the thermostat is set just so:  cool in the summer and warm in the winter.  If it’s too hot, he could have a seizure.  If it’s too cold, he could have a medical crisis.  Medical complications can add extra stress to an already stressful situation, so having a plan, to include having an alternate place for us to stay should we have to evacuate our home, is not a bad idea. 

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Autism and Wandering: Constant Vigilance

Lost childBy Cathy Jameson

An estimated 49% of those diagnosed with autism have wandered or eloped from home, from school, and while out in the community.  Those who wander tend to be drawn to water – pools, ponds, canals, lakes, rivers.  Wandering can, and has, resulted in injury and death.  Parents need support.  Educators need support.  First responders who are called to join search efforts when a child wanders need support, too. 

Locks. 

Alarms. 

Vigilance. 

Even though I possess each of those, Ronan has still managed to wander. 

While I walked into the kitchen to unload groceries the other day, my non-verbal son, Ronan, tried to walk out the door.  It was my fault the door was unlocked.  I hadn’t finished unloading the car, so I hadn’t secured the door just yet. 

Thinking Ronan had gone to the living room, I started to put some food away.  While my back was turned, Ronan made his way to the den where I’d left the door ajar.  The den door leads outside.  Ronan doesn’t like to play outside.  Content in the house, he is happy and safe indoors.  But not that day.  That day, while I began to put groceries away, he thought he’d go explore. 

Thankfully, we have all sorts of “bells and whistles” on every one of our doors that leads outside.  The bells on the door handle jingled when Ronan reached for it.  That noise tipped off his younger siblings, who blared for me loudly while trying to block their brother from going any further.

“MOM!  MOM!  RONAN’S TRYING TO GET OUTSIDE!” 

I swiftly intercepted Ronan before he could take a step into the big, big world and thanked my children for being so vigilant.  Redirecting Ronan, I lead him away from the door, locked it, and brought him to another room where he could play.  Shaking my head, I thanked his Guardian Angel and then muttered under my breath, Two seconds.  That’s all it took. I turned my head for two seconds…

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Vaccination & Segregation

Sneetch unvaxedBy Cathy Jameson

It isn’t often that I can’t come up with a topic to write about for a Sunday’s post, but this week, after days of brainstorming, nothing satisfied me.  Not wanting to waste any precious time, on Friday morning I cruised through Google news to see if anything there grabbed my attention.  Something did.  But it wasn’t the pro-vaccine article that grabbed my eye and got my wheels spinning.  It was someone’s comment that piqued my interest. 

Paraphrased, an obviously very pro-vaccine individual told another commenter, who happened to have a vaccine-injured child, that Parents like you who choose to not vaccinate should not be allowed to mingle with the public. 

As terrible as that comment sounded, I wasn’t shocked.  I kept reading. 

Other pro-vaccine commenters began to leave similar messages.  They were in agreement and clarified that The Unvaccinated should be barred from public schools, from stores, and from society in general.    

They continued: 

The Unvaccinated should be corralled into their own society. 

With the hopes that child protective services would soon pay a visit. 

And maybe the sheriff, too. 

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Syllabus for Your Life With Autism

Autism chalkboardBy Cathy Jameson

As I was sitting in Fiona’s classroom during the Open House at her high school last week, I glanced at the syllabus that her AP History teacher had just distributed.  The thorough explanation of every topic, types of assignments and class expectations were intense.  At 3 pages in length, it was intimidating.  After reading over each page though, and after hearing the teacher explain his goals for the group, I began to feel a somewhat relieved.  The information presented gave me a better understanding of why the course is in fact intense—besides learning as much as they can, teacher and students will work together to prepare to take (and pass!) the AP exam scheduled for next spring.  It’s an important exam.  Those who score 4s or 5s are eligible to earn college credit.  I’m proud of Fiona for thinking she’s ready for such a challenge.  If she can follow the extensive list of requirements and meet the expectations that her teacher described, I have no doubt that she will do well. 

Over the course of the evening, I was given a few more syllabi to read.  They were not as detailed as the AP course syllabus was, but Fiona’s teachers were thorough in presenting their class goals, assignments, and expectations.  Half-way through one session, I thought to myself, if only autism parents had a syllabus.  If parents knew exactly what to expect and when, imagine how much easier some of life with autism could be…

Course:  Life With Autism

Course Description:  The Life With Autism course is an open enrollment course.  It begins as soon as you find it necessary and will remain open and available with no predetermined end date.  The course focuses on the affects autism has on the individual and those closest to him/her.  Topics covered include typical behaviors, typical struggles, and typical situations an individual with autism will experience.  Students in the course will use a variety or resources such as books, journals, and the Internet.  As each person brings a unique set of gifts to the class, you may also be asked to be a resource.  Anyone who is caring for a child with autism may enroll in Life With Autism.  This course is geared toward parents of children on the autism spectrum, but anyone who is teaching a child on the spectrum or who is providing therapy to an individual with autism, and anyone who is curious about the spectrum disorder, may also enroll.  Since autism can be quite costly, the fee for this course has been waived.

Location:  There is no designated classroom.  Students will learn and experience autism wherever they or their child may be – at home, school, church, and assorted community settings.  

Scheduled Class Time:  24/7

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Just Breathe

How much loveBy Cathy Jameson

We had a long and lazy summer.  The best part of the summer was that on any given day, my kids had no idea what day it was.  They lost track of what time it was too.  Our summer days were alarm clock-free and saw no mad dashes to get us anywhere.  We woke up when we wanted and we did whatever we wanted to.  The only plan I made was to make no plans.  This summer we needed to just be.  So we did.  And it was glorious. 

Toward the end of August, I had to mentally prepare myself for the impending changes towards the end of August.  A new school year was right around the corner.  That meant early wake ups, mad dashes and a lot more structure than what we had happily gotten used to.  I wasn’t ready to embrace the busier schedule that was about to begin, but I was ready to do something different. 

With the extra time I knew I’d have while the big kids were busy at school and while Ronan’s therapy schedule kept him occupied, I thought that maybe I would venture out of the house.  I crave to help others, so I thought that maybe this could be the year that I would finally have time to do that.  I’d thought I’d start by volunteering more than once at the kids’ school.  I saw myself assisting in the classrooms, in the lunchroom, and at recess.  

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Writing the Wrongs

Syringe Pen WritingBy Cathy Jameson

I have many interests, but I tend to gravitate and read conversations about autism and vaccines when I sit down to read.  With all the social media opportunities available these days, it’s quite easy to respond to what I’ve just read.  I can chime in, leave a comment and get involved in a variety of online conversations.  Unbelievers, trolls and those adamantly opposed to parental choice can chime in too, but for the most part, lots of the other readers and commenters on the pages I’ve bookmarked are on the same page that I am – we believe that vaccines resulted in our child’s autism. 

The kind of autism my child has isn’t easy.  Having started out life typically developing, it was shocking to see my child tumble onto the spectrum as hard as he did.  Now at 13 years old, Ronan’s unable to speak and toilet on his own.  He’s prone to wander.  Despite being on anti-epileptic medication, he still has seizures.  Despite years of therapy, he’s still very delayed.  Despite all the hardships, I hang onto hope that some good will come from our family’s autism and vaccine experience.

Vaccines aren’t the only cause of autism, but it’s one that can’t be ignored.  Learning that vaccines can result in autism shocks a lot of people.  But it isn’t just autism that shocks and concerns parents like me.  It’s the vaccine ingredients, the vaccine schedule, the mainstream vaccine rhetoric and also the downplaying of how serious an autism diagnosis is that concerns me.  I don’t add my two cents on every autism and vaccine thread or convo pops up on my screen, but I do chime in when I have the time and the energy to participate. 

Things I want another parent to know is that I, like so many other parents of children who are vaccine injured, speak from experience.  We’re not talking just to hear our own voices, and we’re not volunteering our input of some random topic we’ve never heard of.  Vaccines have severely altered many family’s lives.  They destroyed my own child’s potential.  I speak up about that because I don’t ever want another child or family to go through the negatives that Ronan and my family have. 

Sometimes my input is greeted with thanks. 

Other times, it’s with angst. 

Who does she think she is?  Who is she to tell me what to do or not do with my kid?  She has no right to butt in my health care choices. 

And they’re right.  I can’t stop another parent from vaccinating.  I can warn them of what can happen if the vaccine fails or if adverse events present themselves though.  If given the opportunity, I do that.  I offer my insight in the hopes of educating a parent and will do so right up until the moment the needle goes in.  But I can’t stop them.  That’s why up until that needle could go in, I’ll continue to encourage every parent to…

Know the risks.

Know the facts. 

Know their rights.

Somedays I get over zealous and think I need to share those points all day long and with everyone I know.  I’m sure some family and friends get a little tired of me stepping on my soapbox.  They probably say to themselves, Oh, geez.  Here she goes again! 

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For the Next Generation

GenerationBy Cathy Jameson

I’ve been sharing my son’s story on several platforms for several years now.  For as many years as I’ve been sharing it, some people still haven’t heard what happened to Ronan.  When I meet someone who is curious about his vaccine injury, I don’t mind retelling the story one more time.  I do that in the hopes that what I impart is useful – be it a small piece of advice, a gentle warning, or if it becomes the start of a conversation that gets them thinking outside the box, I’ll keep sharing Ronan’s story.

One of the last times I shared the story, I added a few afterthoughts.  I did that because I knew that other people, including an expectant mom that I asked to join in, were listening to the conversation.  I didn’t want to scare the pants of any of the women but knew that if I wasn’t completely honest with them, they would walk away confused.  Worse, they could walk away upset with me.  Since the last thing I want to be is the source of someone’s anger, I carefully crafted my responses while also cited resources that supported the wisdom I wanted to impart. 

I shared what I’d do if it was me – if I was pregnant again, if I was taking my brand new baby in for a “well-visit”, if I was told vaccines were necessary.  After offering what I had to offer, I didn’t want to forget my thoughts.  So, I sat down and typed them up and called them Things I’d Do Differently

It isn’t a long list but could quite easily be expanded to include more details, lots of links, and plenty more topics.  But for now, for today’s post, stemming from one of the latest convos I’ve had about Ronan that lead to talking about diseases that lead to talking about vaccines that lead to talking about pregnancy that lead to talking about pregnancy and vaccines, here are 10 things I’d do differently today.  

What else would I do and what else could I tell a young mama-to-be to know to help her make a more informed choice?  Here’s a start:

1 – Learn the immune system, its function, and how to support it.

2 – Learn about communicable diseases, how they’re spread, and how long the disease usually lasts.  Also learn where the disease is typically caught (locally?  regionally?  overseas?) and how the disease run its course (rash?  fever?  vomiting?).  Then, learn how to treat disease and know what, if any, long-term effects may result from it.

3 – Weigh the likelihood of coming in contact with the diseases.

4 – Learn which vaccines are on the current recommended vaccine schedules (pediatric and adult).

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Wouldn’t It Be Nice

Summer dreams
By Cathy Jameson

Thanks to an FB friend for today’s post.  I guess I should thank Facebook as well – without their newsfeed feature, I’d have missed a vaccine conversation.  Like other online vaccine conversations, this one drew me in.  It drew me in for the usual reasons and also because it was a conversation with a politician.  He wasn’t my representative, but he had my attention. 

When I began to read his status on Thursday morning, I initially thought, yay! 

He’s talking about vaccines

And publicly, too! 

I was optimistic, so I continued to read.  

Then, my bubble burst. 

Here’s a screenshot of what I’d read. 

CJ 8 14 1

The pat response, the “bunny ears” quotation in reference to the CDC cover-up, and the Snopes citation at the end – it was a slap in the face. 

I didn’t have the heart to chime in. 

But other mamas did.  

Those mamas were not backing down!

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Fight for Your Right to Vaccine Safety Education and Choice

Flag heartBy Cathy Jameson

Last Wednesday, Ronan stayed behind at home under the watchful eyes of our therapists and staff while I traveled with my other kids to a meeting.  I normally prefer to go to big meetings by myself – they’re long, they can be tiresome, the topic could go right over my kids’ heads – but the kids asked to go with me to this one.  A dear friend of mine wanted to go as well, so we loaded up our kids, got on the highway, and took a road trip toward the statehouse.  We were on our way to the Joint Commission on Health Care Healthy Living /Health Services Subcommittee Meeting.  Why?  Because vaccines and exemptions were on the agenda

CJ 8 6 1

It was important for us to be there.  Other families thought so, too.  From other peoples’ accounts, 650 of us showed up that day.  Ronan’s younger brother, Willem, made some observations about that he saw and heard, so I asked if I could write about them for today’s post.  He said yes!  Willem, like his big brother, was injured by vaccines.  He’s been a quiet observer.  Last week, he observed quite a lot…

Why did we go to the big city this week?

We went to fight for our rights.

Why was it important for us, for our family, to go?  

It was important because we have experience with vaccine injury.

That meeting had to do with vaccines, but it also had a lot to do with taking away a right, a religious right.  Do you know what that means? 

It’s taking away a freedom.

Right! 

--

Note:  As families prepared to travel, a list of talking points was suggested.  This important information came from NVIC – “Removing the religious exemption to vaccination will prevent Virginia citizens from exercising freedom of conscience, which is protected in the Virginia Constitution and was reaffirmed by the 2007 Religious Freedom Act and the 2013 Parental Rights Act guaranteeing freedom of religious and the fundamental right of parents to make decisions concerning the upbringing, education and care of their children.”

--

How important is our religion to us?

It’s the most important thing in the world. 

You’re right.  It’s a big part of our family.  It’s a big part of a lot of other families as well.  You got to see some of those families last week at the meeting.  Can you tell me who you saw? 

We saw a lot of people--a Senator who looked like Donald Trump, but it wasn’t Donald Trump.  I saw our friends and a lot of other people.  Everyday people like moms, dads, kids and some grandmas…and babies, lots of babies! Those other people…they were all wearing red. 

Why were they wearing red?

Because they were standing together as a group to send a message to the delegates…and the CDC--even if they don’t care.  They were saying there should be parent choice for vaccines instead of forcing children to get vaccines.  One of the ladies there talked about that.  She talked about taking the religious exemption away. 

Can you tell me about the other speaker you heard at the meeting?

This guy talked about stuff from his 73 pages of slides for his presentation.  It was all about how “good” vaccines are. 

They may be good for some people, this guy said.  I say vice versa.  I think that they may not be good.  Saying they were good was one of the mistakes he made.  The first mistake was that he spoke way too long.  He made a couple of mistakes, actually a lot of mistakes.  He tried to say ‘thimerosal’ but said it wrong.  Then he said it wasn’t in vaccines.  But it’s still in some.  Then he couldn’t even pronounce some of other words on his slides.  If you can’t pronounce the words, you probably shouldn’t be talking about them. 

Good point!  I can tell you were listening.

--

Note:  ‘That guy’ Willem is referring to was Stephen Weiss, a Senior Health Policy Analyst.  You can read through his presentation, which did include several errors, here. 

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Breaking Point

Reach out handThis is a Best Of post from Cathy who has the weekend off.

By Cathy Jameson

About two weeks ago I decided I needed to take a break from my online activity.  While it’s “my link to the outside world”, being online is also a major distraction and excuse for much of my procrastination.  I allow other’s stories, concerns, and posts invade my private time.  Worse, I let it creep into some of my mothering time. 

My kids, who are home all day now on summer vacation, know I get easily sucked into message boards.  They’ve started to take advantage of how quickly I get distracted as I click, click, click half a morning or afternoon away.  When I noticed they were beginning to slip into their own avoidance habits, like playing Minecraft instead of keep up with summer reading, or turning on the TV to catch up on 1 or 2 (or 4!) cartoons, I knew I had to not just curb my distractions; I needed to make them go away completely.  I was going to test myself for a spell and say no more.  Internet, be gone! 
The day I decided to take a break from the World Wide Web wasn’t the day I temporarily shut it down though.  I needed to get one last fix.  I surfed and surfed until I felt like I’d clicked through enough articles.  Then it was time to walk away.  It’s funny that I felt like I had to gear up to go dark and that I gave myself permission to give up something no one is requiring of me.  That shows you how addicted to social media I have become. 

The first day of avoiding Facebook, some Yahoo boards and my daily go-to autism news sites was a challenge.  What a terrible habit I have created to want to constantly check in somewhere!  But, after a day or two of going internet-free, and after I’d used my normal computer time to clean out a desk that had become a neglected storage unit, I felt like I could push through this fast I was attempting. 
I got lots of stuff done.  The kids started to be creative instead of sedentary.  We scheduled play dates.  We ventured out into the real world.  As the week progressed, Ronan got to practice going out into our local community—a community I prefer to avoid, avoiding it because Ronan doesn’t always do well when we try to run errands.  Plus, people in the real world and I don’t usually have too much in common, which is the biggest reasons I gravitate toward being on the internet—so I can connect with other like-minded moms and dads.  But, out into town we went to see what the world had to offer. 

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Questions and Answers

Keep calm ask MomBy Cathy Jameson

Another hopefully ever after post…because writing about these moments helps me get through some of the other stuff the world’s thrown at me.  xo, Cat

When my non-verbal son needs me, he usually signs or types his requests.  Ronan sometimes attempts speech with those requests but is unable to formulate words that the rest of us can understand.  I encourage vocal output from him always hoping to hear a word or two.  Now that the siblings home on summer vacation, they encourage that as well. 

It’s a lot louder in the house with Ronan’s siblings home.  Before they started their summer vacation, it was really quiet around here.  That quiet has been replaced with other things.  There’s constant playing.  There’s constant wondering when the next meal will be served (even though the kids just ate).  And there’s constant talking.  The siblings talk.  Boy, can they talk.  A lot! 

I am beyond grateful that my typical siblings do not struggle with speech issues like Ronan does, but ohmyword, the question asking they’ve done this summer is at an all-time high.  With all the questions that I was asked one afternoon in particular last week, many that I had already answered in detail, I kinda sorta lost my cool.  As a result, I instituted something that I’d warned the kids about when they’d reached a tipping point on another long, questions filled day:  if you have something to ask Mommy, you need to write it down.  I told them that if the question had been already been asked and answered, the kids should keep in mind that there was no guarantee that their written question would be answered. 

The kids mulled over my request. 

They were not amused. 

But I got what I was looking for, which was a moment of silence.  

Until I read some of their questions. 

From my oldest on down to my youngest, each child is unique.  You can see that in the questions they asked over the next few hours one day. 

Cathy July 1

Fiona cannot wait for Ronan to catch up with her.  Since that has yet happened, she, like me, wishes we could go back in time and do things differently.  She remembers his typical baby days when things were easier.  She also wants him to experience the independence she will have when she grows up and goes out into the real world.  Like me, she’d go back in time and do things a little bit differently. 

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Waiting Room Observations

Take-care-of-each-otherBy Cathy Jameson

A few weeks ago my kids were discussing Heaven.  After each of them shared what they thought Heaven looked like, one of the kids added that some people have to wait to get there.  Instead of going straight up, they make a stop in Purgatory.  Ronan’s little brother looked at me and asked, “Mom, what do you think Purgatory looks like.”  Hoping for a one-way ticket “straight up”, I laughed and told him that I hoped I’d never find out.  He was serious, though, and wanted a better answer. 

So I told him, “When I was a young child I enjoyed taking a subway ride into the city when we’d visit my grandparents.  Going into New York City was fun, but I was always afraid of waiting for the subway.  Sometimes the trains were quick and we didn’t wait very long.  But other times, when the train didn’t come right away, I had time to think about the strange underground noises I wasn’t used to and got scared of the darkness that I saw when I peered down the tunnel as I wondered where the train was.  That part made me feel very uneasy, and I couldn’t wait to get back on the street level!  As an older child when I learned about Purgatory, I imagined that Purgatory looked and felt like a deserted, dark subway station.  A few benches would be there on the platform, but no one else was sitting in them or walking about the place.  No trains would come zooming in to whisk to me away either – if I was in Purgatory, it meant that I was there for a reason.  I knew I’d be waiting, waiting, waiting until it was time for me to get to the next stop: Heaven.” 

By the time I finished the description, all of Ronan’s siblings were listening.  I ended with, “To me, Purgatory is a time of waiting.  Good things will come, but wherever a person least likes waiting, that’s what Purgatory looks like.”  After taking all five kids to Ronan’s big sister’s orthodontics appointment – which ran late and took much longer than we all expected, I’ve changed my mind.  Purgatory is an overcrowded waiting room where autism is put to the test. 

An overcrowded waiting room where time stands still, where some people stare and others look on with pity – that’s where we found ourselves last week.  A short appointment turned into a long appointment that kept getting longer.  Poor Ronan!  He tried so hard to be so very patient.  Poor me!  I tried so hard to keep Ronan so very patient but failed miserably. 

If I knew how long the appointment would go over (40 minutes longer than anticipated), I’d have brought more things to keep him entertained.  But in juggling him, in redirecting him, in keeping him calm, in promising him that “this too shall end”, I saw a different side of Ronan.  He was anxious.  He was agitated.  He was very concerned.  But it wasn’t for himself; it was for his big sister, Fiona. 

There she was, his biggest helper, sitting in an uncomfortable looking chair having all manner of stuff being done to her teeth.  Poking, prodding, cleaning, polishing.  Ronan’s seen it before but had never taken much interest in the procedure before.  Happy with his iPad or his favorite book, Ronan’s sat quietly in the chair next to me at a previous appointment while Fiona sat in that same uncomfortable looking chair while her teeth were being poked, prodded, cleaned, and polished.  He paid no attention to it before though.  But last week, all of his attention was directed toward his sister, and I was happy to see it. 

Because of how little he communicates, we sometimes wonder how much Ronan understands.  We know that he takes in a lot, but with such little feedback from him, it isn’t until we’re in a situation do we learn what Ronan thinks of it.  When he does expresses himself, we take note and we encourage a response always hoping that we can make meaningful contact in return.  That’s what I observed happen last Tuesday. 

Ronan’s facial expressions and his inability to focus on the few things I’d brought in his backpack to keep him happy were indicators that something was clearly bothering Ronan.  Watching him trying to get Fiona’s attention from the chairs we were sitting in for as long as he tried was inspiring.  He needed his sister.  But she was over there and we were sitting over here.  Curious about what he felt he needed to do, because it seemed like Ronan wanted to protect Fiona from whatever the technician was doing to her, I said, “Buddy, she’s okay.”  But that was not enough for Ronan.  He needed to see for himself. 

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Pharma Adverts on TV: What Will You Say?

TV pills

A petition is circulating to put a halt to the current Gardasil vaccine campaign.

TELL THE FTC: Merck HPV Vaccine Television Commercial IS FALSE & MISLEADING

By Cathy Jameson

When we were on vacation last week, my kids were reintroduced to cable television.  At one point, after they’d watched a few shows, I asked the kids to count how many big pharma commercials they saw being advertised.  In a short amount of time, quite a few had flashed across the screen.  Since they couldn’t fast forward through the commercials, which the kids admitted were getting annoying, they turned the volume down, talked amongst themselves, and waited for the drivel to be over.  I was proud of them.  

Not too long ago, they’d have been glued to the tube and ready to repeat whatever it was they heard… 

After getting Ronan off to school one morning several years ago, I could feel a migraine coming on.  Rest, in the form of a quick nap in a darkened room, is usually all I need to stave off a headache, so I asked my children to play a little quieter so that I could do that.  My kids had what they thought was a better idea.  They recalled what they’d heard on TV and thought they’d offered me some health advice instead. 

Mommy, just take that medicine.  It makes headaches go away.  Then, you’ll be all better. 

Three of my kids nodded to each other and then smiled at me – Yeah, there’s that one that makes you feel better.  You can take that one.  It makes headaches go away fast.  The commercial said so!

I asked my oldest to repeat herself.  She repeated only the last part:  The commercial said so!

Pro-vaccine plots on PBS shows had me begin to limit my children’s television time already.  The day that my children suggested that I just pop a pill was the day we decided to completely cut cable out of our lives for good.  Sure, I miss sitting on the couch and vegging out to mindless television at the end of a very long day, but I don’t miss the annoying, in-your-face advertisements that had my children questioning me.  It was a pivotal day for me as a parent and one that I’ll never forget. 

That day, I looked at my daughter and said, “Honey, Mommy doesn’t need any medicine.  I just need a quick nap.  Give me 20 minutes, and I’ll be okay and ready to play with you again.” 

I could tell she wasn’t convinced that a quick nap would do the trick, but she shuffled the little ones into the playroom and found a quiet game that they could all play together.  I closed the curtains and laid down on the couch in the living room for 20 minutes.  I slept.  Hard.  And woke up refreshed and headache free as I knew I would.  After I’d gotten up from the quick nap, I unplugged the TV. 

Twenty minutes.  It was all I needed to get rid of the headache.  It was all the time that my daughter needed to trust me again, too. 

I called the cable company later and told them that we didn’t need them anymore.  Trying to convince me to keep a service I didn’t want or need, the representative attempted to offer me more incentives – prime movie channels!  live sports events!  more channels than I’ll ever have time to watch!  I listened to the pitch and then politely said, “No.  No, thank you.  We’re done with cable.”

If I want to watch television shows, I can still do that.  I may be a season or two behind with what the rest of the world is currently watching, but without cable TV, I can still veg out at the end of a long day and watch a show or a feature-length movie.  The best part is that I’m not forced to sit through anything that targets ‘anti-vax’ parents as idiots.  I’m not forced to watch big pharma commercial after big pharma commercial after big pharma commercial during a daytime talk show.  I am free to pick and choose what I want to watch and when I want watch. 

I may pay a small price to have other viewing options, but I can still enjoy television – mindless or otherwise, through several avenues:  online streaming, Redbox, Netflix, and even YouTube.  Now, YouTube has gotten a tad annoying with their choice of ads that they feature – and that you can’t skip, but I can mute the volume and look away.  My kids know to do the same when they see questionable advertisements, especially ones that big pharma pays for.  Sadly, the big pharma commercials, like the latest HPV vaccine advert that I heard other parents discussing, are the ones we can’t always skip over. 

Since we made the decision to cut cable television out of our lives all those years ago, I was unable to see the latest HPV vaccine advertisement when it aired on TV.  Turns out, I didn’t need to have cable to see it – I was able to find the commercial online at the end of last week.  I was not impressed: Merck HPV vaccination commercial.

Others were not impressed either.  Citing the commercial false and misleading, a petition has been created, which you can share in your groups and on social media sites.

I can’t mute every advertisement we hear on the radio or rip out the ones that I see in print before my kids are exposed to them, but I do my best to keep adverts, especially the ones sponsored big pharma, out of my family’s life.  I’m encouraged that others are doing so as well. 

Cathy Jameson is a Contributing Editor for Age of Autism.


Going Home Again

Home heartBy Cathy Jameson

Our family went on vacation last week.  A small town that borders the ocean, we took the kids to where my husband and I met.  It’s home to me.  It’s also home to my husband and where he hopes for us to one day retire.  It’s where we met almost 20 years ago.

RI bridge sailboat

Almost 20 years ago – that was pre-marriage, pre-kids, and pre-autism.  If you’d told me then what kind of life I’d be living now as the parent of a child with severe special needs, I’d have thought you crazy. 

Really. 

And why not? 

Growing up, I knew no one with autism.  Having very briefly studied it during a special education course I took one summer back in the early 1990s, I thought autism was an unfortunate communication disorder.  I learned that it was more than that during that summer course, but with my focus of general education, it would be years later, and only when my son was walking down an autism diagnosis path that it crossed my radar again. 

Always hoping to one day be a mom, I never thought that autism would be something that any of my children would be dealing with.  Fast forward to today, and yes, it is something that one of my children deals with on a daily basis.  It’s not the kind of autism my special education textbook described though.  No, the autism my son has includes behavior issues, GI issues, seizures, and the loss of functional speech.  It’s nothing I’d ever experienced nor something I ever expected.

Pre-marriage, pre-kids, and pre-autism, I had no idea how much I didn’t know.  I had no idea how much I’d have to understand, how much I’d have to teach myself, and how much I’d have to learn to accept as well. 

I’m still working on accepting all there is to accept as the parent of a chronically ill child.  That part hasn’t been easy, but with the help of some friends, some of whom we ran into when we were back home this week, I know it’ll get easier.     

For the most part, the friends we ran into have typical children.  Even so, they’ve read my stories.  They’ve clicked on links I’ve share.  They’ve looked things up for themselves.  They’ve asked for clarification of words and terms specific to autism and mitochondrial issues that Ronan has that they don’t recognize.  They’ve watched us from a distance but have never waivered in their support for me, for Ronan, and for the advocating that we do as a family, some of which includes advocating locally for safer vaccines! 

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A Father’s Quest - Gardasil Vaccine

GardasilBy Cathy Jameson

About a year ago, I chimed in on an online conversation.  A man, who I assumed had a daughter because of the type of questions he was asking, was curious about vaccines.  He was specifically curious about the HPV vaccine.  He was especially curious if there were any risk factors associated with it.

Like all vaccines on the CDC’s schedule, the HPV vaccine does come with risks.  Despite referencing that fact right from the CDC’s website, I, as well as a few other parents, were unable to fully convince this fellow that the HPV vaccine wasn’t all that great.  Of course, it’s not our job to convince anyone to do anything, especially when it comes to making personal health care choices, but since this fellow was asking for further information, several of us took the opportunity to tell him what we knew. 

Statistics from current data with references—many from mainstream sources – was shared.  From the tone of the dialogue, it seemed like that information was appreciated.  As far as online vaccine conversations go, I thought it was a great conversation.  

He asked more questions.  We supplied more answers.  For awhile there, it felt like this guy was hanging onto our every word.  He did that until some of us started to add personal information. 

In the past, personal experience is inevitably woven into these sorts of conversations, and why wouldn’t it?  Vaccine statistics are based on vaccines administered to everyday folk and their kids, but when some parents start sharing their firsthand observations about vaccines, including how our own typically healthy children ended up with documented medical issues post-vaccination, some people stop listening.  The beginning of the conversation may have gotten off to a good start, but could tell it was starting to change.  This guy had just about had his fill of our input. 

I couldn’t blame him. 

I know how far-fetched some of our stories sound – healthy child turns chronically sickly, or begins to lose skills, or goes from typically developing to having autism-like symptoms with the only change in routine being a “routine” round of vaccines.  Believe me, I was an unbeliever when I heard those kinds of stories, too!  The more hard-to-believe personal stories and reasons that were offered as to why parents like us were now vaccine hesitant, the less he listened.  I wasn’t surprised that this guy, like other parents who are desperate for more information, began to turn us off soon after. 

He, like lots of other people who begin to question vaccines, wanted only the “good” statistics.  He wanted to get his hands on only unbiased scientific-based articles that focused on just the benefits and not on negatives that sadly do exist.  I wanted to tell him, Good luck with finding all of that, buddy! but took a step back from the conversation for a few minutes instead. 

Continue reading "A Father’s Quest - Gardasil Vaccine" »


Where’s the Outrage? Vaccines and Aborted Fetal Tissue.

Where pinkBy Cathy Jameson

I’m sure many of our readers are aware of the vaccine ingredient I’ll mention in today’s post.  Others have already written about the topic and covered the facts well.  Living Whole and Children of God for Life, for example,  have bravely spoken up about the use of aborted fetal cell lines in vaccine production.  I applaud them.  I wish I could applaud more pro-life groups, but I hardly see them speak up about the topic.

I say that I’m a hardcore Catholic.  But even I’ve yet to take on this subject.  If I were serious about it, I’d have contacted the leaders in my Church about it.  Some leaders have spoken, but their very broad statement seems more of a CYA than anything (and I’m not referring to Catholic Youth Association if you get my drift). 

For whatever reason, “the greater good” that vaccines supposedly benefit seems to trump the act of abortion and the use of this ingredient is justified.  It shouldn’t be.  But it is.  I think that needs to change.  So here goes…

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I shared this link of vaccine ingredients in a post a few weeks ago.  I’m sharing the link again in today’s post.  I’d like to do that because some of the ingredients that are listed have been on my mind for a few days now.  They’ve actually been on my mind for years, but I haven’t written specifically about them yet.

Someone highlighted the use of aborted fetal tissue use in a screenshot.

that I saw shared on FaceBook not too long ago:

CJ outrage 3

Sitting here reading those highlighted words makes my stomach turn.  

Continue reading "Where’s the Outrage? Vaccines and Aborted Fetal Tissue." »


A Family Member Responds to VaXxed

Sister memeNote: You know Cathy Jameson for her weekly posts: sometimes amusing, often heart stopping, always required Sunday reading.  Her sister Bridget went out of her way to see VaXxed The Movie and wrote about the experience. Family members can be our source of the greatest support or the biggest disappointment.   You can read the full post and much more from Cathy at her blog. And since Cathy often ends her Sunday posts with a song, check out my choice at the end of this post. Feel free to dance. It's Friday, after all!  Kim

A Family Member Speaks Up about VaxXed

Painfully aware of what's happened to Ronan, extended family members know that vaccines have done more harm than good.  Not every family member is in agreement - and have made that quite clear to us, but a few have quietly supported us through every hurdle, seizure and setback Ronan has experienced.  I don't know if I'll ever be able to fully express how much our their support means to me.  
When I found out that some of our extended family were going to be attending a Vaxxed: From Cover-Up to Catastrophe screening in their area, I cried.  Then I made sure to thank them.  By attending the screening, they jumped out of their comfort zone and bravely spoke up with us.  

After seeing Vaxxed, my sister, who has been one of Ronan's biggest and most vocal cheerleaders over the years, felt called to share her thoughts about the film.  I know that she may get flack for sharing what she did on her FB wall, but she shares as an eye witness to what happened to Ronan.  I can think of no one better to offer such important information than someone who has seen firsthand the negative consequences of vaccines.  

After I read through her post, I asked my sister if I could share it here.  She said yes, and I'm so glad. 

Continue reading "A Family Member Responds to VaXxed" »


Regrettably Yours

Regret
By  Cathy Jameson

For some children, like my son, autism isn’t just a different way of thinking; it’s medical.  From GI problems to severe expressive language delays to seizures, the spectrum of issues Ronan has are complex.  Many of those issues have contributed to a bad day.  The tears that roll down my cheeks on those days sting.

Learning how to handle all of what encompasses Ronan’s diagnosis hasn’t been easy.  The bad days can be really bad – those pop up when we have to resort to using emergency meds to stop seizures, or when we have to call 911 after Ronan’s wandered, or when I’ve become the punching bag after Ronan has tried to but is unable to communicate his needs. 

Due to Ronan’s behavior, and sometimes his seizures, days can go from bad to worse and quickly.  When that happens, we cancel things – things like Ronan’s therapy, a planned outing, and attending the siblings’ sports events. 

Dear Therapist, We’ll have to try, try again tomorrow…today is just not going to work out.

Hey Friends, we regret to inform you that we won’t be able to join you…hopefully next time.

Dear Coach, I hate that I can’t be there to watch the game. Please keep an eye on my kiddo for me.  Ronan and I are home today…cheering from a distance.

When all is clear and Ronan is back to his usual self, we tip toe back into our schedule and into the world around us.  Those are the good days. 

Ronan’s good days are really, really good – when he says a word, when he doesn’t need prompting to complete a simple task, when he willingly interacts instead of pushes us away.  We celebrate those and pray for more of them.  Lately, we’ve had a few tough days in a row.  When those days start to stack up, I find myself feeling sad and a tad regretful about how things have panned out.   

It’s not the first time I’ve found myself feeling regretful. 

As a new parent, I regretted not knowing as much as I do now.  When I knew in my heart that something was wrong with my child, I regretted waiting to act on my suspicions.  When I suspected that my son was showing signs of developmental delays, I regretted not listening to my mother’s instinct.  When I was getting nowhere making sense of the types of delays that Ronan was exhibiting, I regretted not asking for help sooner.  After finally asking for help and having my concerns completely dismissed, I regretted not switching doctors.  After doing some more reading and searching for answers, I regretted that I let the titles of the people I was talking to intimidate me.  None of that regret helped me in the moment.  None of it diminished any of the worry that I was also feeling. 

Oddly enough, regret fueled my next move. 

Fearing that what I suspected would lead us down the road to an autism diagnosis, I knew that it was time for me to start asking different people, people who would listen, for help.  Help came, but only after some of the professionals close to Ronan skirted the issue – Mom, don’t worry.  It can’t be autism because Ronan is able to point to things! 

He can make eye contact! 

He can still communicate!

And good news, he doesn’t line things up! 

I appreciated the positive outlook, but I couldn’t shake the nagging feeling that something was terribly wrong. 

Continue reading "Regrettably Yours" »


VaXed: From Cover-Up to Catastrophe Playing in DC

VaXxed 2
Cathy took a slightly different course this morning.

By Cathy Jameson

VAXXED: FROM COVER-UP TO CATASTROPHE

The Film They Don't Want You To See

** Now showing in Washington, D.C. **

Having opened over the weekend in our nation’s capital, the film, Vaxxed: From Cover-Up to Catastrophe,  will be shown in the District through Thursday, May 26th

Vaxxed is an investigation into how the CDC (Centers for Disease Control and Prevention), the government agency charged with protecting the health of American citizens, concealed and destroyed data in their 2004 study that showed a link between the MMR vaccine and autism.  This alarming deception has contributed to the skyrocketing increase of autism, potentially the most catastrophic epidemic of our lifetime.

Vaxxed is A Del Bigtree Production of an Autism Media Channel Film and is being distributed by Cinema Libre Studio

Invite your doctor, clergy and Representatives to join you for the Q&As with the filmmakers!  Dr. Andrew Wakefield, Polly Tommey and Del Bigtree, are scheduled to speak on Tuesday, May 24th, and Wednesday, May 25th, following the 5:45 pm and 7:45 pm shows. 

Showing at the Angelika Pop-Up at Union Market, located at 550 Penn Street NE, Washington, DC, 20002, click here to purchase VaXxed tickets

For more information and to read the latest news about Vaxxed: From Cover-Up to Catastrophe, check out the Vaxxed website,  and follow them on Twitter.   


Right to Know

Right To NoBy Cathy Jameson

The chance to educate parents in Oklahoma of the risks associated with products advertised for children known to have side effects was recently squashed.  As a former consumer of these products, learning about the decision to withhold information was disturbing.  It reminded me of a time when I traded my ignorance for blind trust. 

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When I’m shopping and see something that I want for my children, I take a few things into consideration before putting the item in my cart.  I ask myself if it is child-friendly and something my kids will like to use or play with.  After determining if it is, and that I can afford to make the purchase, I look over the product and review its quality.  Is it well made?  Does it meet safety standards?  Does the company who manufactures it have a good reputation?  If I discover that a flaw in the product after purchasing it, will I be able to return or replace it?  Simple questions, as a consumer they are valid and serve a purpose. 

Now, if I’m at the grocery store shopping for my children, I ask myself different questions when I see something that I want to buy them.  As I scan the ingredient list, I ask myself, does the product have nutritional value?  Is the particular food healthy – not by industry standards, but my family’s standards?  With the information right there on the box, I can easily choose to put the item in my cart or not. 

My kids don’t love how much I scrutinize products that come into our home, but since I’m responsible for their health, safety and well-being, when it comes to food, technology and health care products, I like to get as much information as I can about the things I’m choosing for them.  Most of the items I purchase list exactly what I wish to know and what I need to know. 

The right to know what’s in a product is a basic yet necessary concept all consumers should be entitled to.  It should extend to all products marketed and sold to parents, but I find that it does not always happen in the medical world. 

Instead of gaining access to information, parents and their rights quickly get brushed aside.    

The Right to Know

When a child undergoes a medical procedure, which include vaccinations, consent is given by the parent or guardian.  Consent is the green light to make things happen.  For some, giving a vaccination is a no brainer and consent is given quickly.  Those parents want their child to be vaccinated and don’t need any extra time, education, counseling, or documentation to help them with that decision.  Not all parents are quick to decide though. 

Continue reading "Right to Know" »


He Calls Me Mom

Calls me momBy Cathy Jameson

Ronan has regressive non-verbal autism.  Losing his speech years ago, I never knew how unbearable the silence that followed would be.  When Ronan needs me, he’s able to show me in a variety of ways that he needs help.  Sometimes he comes to me and reaches for my hand.  Other times he signs “mom” with his pointer finger pointing at his chin.  Rarely has he done it, but he has called out to me using his voice to get my attention. 

Eye contact accompanies most of Ronan’s requests.  Piercing me with his dark brown eyes, I wait for Ronan to tell me what he needs. 

Hey, buddy.  What do you need? 

Ronan may or may not sign his next request.

He may or may not gesture what he wants.

He may or may not take me physically to where he needs my assistance (like to the kitchen cabinet for a snack, to the refrigerator to get a drink, to the living room to plug in the Wii, or to the den to watch a movie).

Since Ronan cannot tell me verbally what he needs, what follows is sometimes a game of charades.  

Do you need help?

A snack?

A drink?

A game?

A movie?

When Ronan can’t communicate what he needs, which is quite often, we’re both left frustrated.  Since Ronan can make some vocalizations, I’m encouraging Ronan to make them after he’s gotten my attention. 

Em. 

Ba. 

Da. 

Um. 

The sounds don’t make sense yet, but since vocalizations can turn into verbalizations, I celebrate every sound that Ronan can make.  Others celebrate with us, too.  Over the years, I’ve shared a few of those happy moments with family and friends. 

I don’t recall why the day was so bad, but look how things turned around when I heard Ronan call for me in January 2011:

The day drastically improved. Cathy Jameson will now be known as "Ah-mum-mum" Thankyouverymuch to Ronan for calling me that to get my attention.

I was over the moon excited that Ronan called for me by name in September of 2011:

Continue reading "He Calls Me Mom" »


The Autism Beatitudes

BeatitudesBy Cathy Jameson

In trying to hold tightly to my usual hopefully-ever-after spirit, this post was created with the warrior parent and their beautiful child in mind.  These parents and their children have shaped many of us into the people we are today.  May they continue to inspire us to do more, to do better, and to always believe.

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What happened to my son didn’t have to happen.  But, it did.  And here I am ten years later still hoping he makes leaps and bounds progress but am settling for baby steps and try, try again moments.  While I myself try, try again to come to grips with reality, I make a point to pray, pray, pray.  As a life-long Catholic, some may think that praying should be easy for me.  But sometimes, it isn’t. 

For years, I’ve had a hard time saying the Beatitudes.  Read during the Easter season, which runs smack dab in the middle of autism “awareness” month (and continues through to Pentecost on May 15th), the Beatitudes can be found in the Gospels.  Eight of them, Jesus spoke of them as blessings, specifically eternal blessings.  That should bring me some sort of peace, or at least begin to humble me, but as I begin to say and pray them, my heart hardens.  Instead of concentrating on the contemplative prayer, my mind wanders.  I think about Ronan’s struggles.  I remember the physical pain that he’s in.  I recall his many hardships.  I recall my own, too.  When I try to refocus, my thoughts are invaded with sadness, worry, and frustration.  

Prayer should lift me up, not bring me down.  But bring me down is exactly what the Beatitudes did the last time I read them.  

CJ beatirudes
                                                         Drawn by Ronan’s little sister, Izzy.

The Beatitudes aren’t the best prayer for me to say, to reflect on, or to go to for comfort.  I’m not going to stop praying altogether, but I think that I’ll forgo reading them for now.  

Continue reading "The Autism Beatitudes" »


Cat Jameson Guest Blogs on Holistically Whole

RJ 4 24
Photo credit: Fiona Jameson


NOTE:  Thank you to Joanna for allowing us to excerpt Cathy Jameson’s guest blog.  Featured on Holistically Whole, a website that covers topics such as autism, nutrition, and healthy living, you’ll recognize much of what Cathy shares in the story.  Even though many of our readers already know it well, we thought we that we, too, would share the story one more time.

One More Time:  The Story That Needs to Be Told

When I prepared to write this guest blog, similar emotions came over me that I had described in a piece I’d written a few years ago:

I remember how overwhelming it was to be that mom. The mom who didn’t know. Who was afraid. The mom who had questions but hadn’t a clue where to look for answers. I also remembered something else: the emotions that come with the eventual discovery of Ronan’s vaccine injury. Sadness. Worry. Fear. Anger. Betrayal. Those emotions subsided but can surface on the bad days. They creep in during bad weeks, too. Those emotions came back last week and were strongest when I tried to tell Ronan’s story again.” – from Combatting Autism, 22 September 2013.

Ronan’s story.  I know it well. It isn’t always easy to tell it, but it’s time to tell it again…

Ronan was born right before Christmas in 2002. Welcomed by Fiona, an excited big sister, he had great APGAR scores at birth (8 and 9).  A cheerful baby, Ronan met his milestones and was interactive with family.  When our friends came to visit, he lit up the room when they greeted him. Everyone noted how happy Ronan was.  They also noticed how his chocolate brown eyes were full of life. I loved that just his presence alone made other people happy.

With two children under the age of two at home, I knew that I wouldn’t be returning to work anytime soon.  I’d left the teaching field right before my oldest was born.  I was happy with that decision and looked forward to play dates, visits to the neighborhood park, and making memories with my family.

We have plenty of memories, but some of them are not what you’d consider normal.

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To read the rest of One More Time, please follow the link to Holistically Whole.


Best of: Baby of Mine

Naked babyBy Cathy Jameson - August 2015

I got to hold a newborn.  I held him again a few weeks later.  It was an exquisite feeling to hold this child. 

The new life.

His perfect little body.

That newborn baby smell.

The endless opportunities he will have.

I’d attended his baby shower several months earlier.  I bought his mom, a young twentysomething, more than I should have but that’s because I was thrilled to support her.  With autoimmune disease in her family history, as well as having had to care for a family member with autism, she was rightfully nervous.  I felt it necessary to offer as much support as I could as she prepared to bring a child into the world. 

Her own history, plus knowing our family well and the medical path that I had chosen for my older children, prompted her to ask questions and to search for answers.  Long before she found herself preparing for her son’s birth, in a quest for knowledge, she’d decided what she would do when it was time to raise a family.  Not only did she decide what she would do, recalling my experience with my children, she also decided what not to do.  Instead of following recommended schedules and standard American practices, she would be as healthy, organic, and natural as she could.  She would be as free from everything “standard” as she could be, which also meant no vaccines. 

Continue reading "Best of: Baby of Mine" »


Cat’s 2016 Autism Awareness Month Playlist

Fun-music-theme-vector-material-20504
By Cathy Jameson

It’s back. The month I used to love but now do my best to tolerate.

Before April gets a chance to begin, and before I start to feel like I’m drowning in blue splattered this and blue soaked that, I thought I’d give you a sneak peek of a playlist that I’ll surely have on repeat. From April 1st through to midnight on April 30th, and through some of the madness that comes during what used to be my favorite month, I have a plan. 

Earbuds in.

Music turned up to a nice respectable level.

Madness turned off.

As I offered last year,  here is an updated playlist for your listening pleasure. Feel free to add your theme song or a get-me-through-all-the-bluewashing song in the comment section below.

xo, Cat

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Maximillian and Medina – Stavos Mammonian

https://soundcloud.com/stavos-mammonian/maximillian-medina

I picked some great songs for this year’s playlist. Some are a bit heavy, but before we get to those, let’s get up and dance.

This one, produced by a friend of mine, puts a pep in my step every.single.time that I play it. On days that I find myself dragging my feet or on days when nothing seems to be going my way, I make a point of listening to it.

When you find yourself starting to feel down in the dumps, go ahead and play it, too. I bet it’ll get that toe of yours tapping. Sometimes a two – three minute dance break will do the trick to keep you going, so don’t be afraid to get up and dance if the spirit moves you. .

Try Everything – Shakira

Continue reading "Cat’s 2016 Autism Awareness Month Playlist" »


6 More Ways to Help During Autism ACTION Month

Sesame street 6By Cathy Jameson

I appreciate it when people recognize how much work it takes for me to care for son.  Ronan is 13 years old and has non-verbal regressive autism.  He needs 24/7 care.  From diapering to redirecting to reducing behaviors to managing his medical issues, including seizures, it’s more than a full-time job for me.  Some friends see that but they don’t always know how to pitch in.  That’s okay.  Some days it’s daunting even for me to think about everything that needs to be done let alone plan and implement and hope that everything goes smoothly!  There’s more than enough to do to keep Ronan happy, healthy, and safe though, so when someone expresses that they want to help my family, I humbly and gladly take it.   

When I’m asked, “Cathy, what can I do to help your family?” I share a few ideas from this list.  Posted two years ago, there are tons of ideas to choose:  30 Days of Autism Action Ideas  Even though there are plenty of ideas on that list, I thought I’d expand on a few of them this year:

1 – I think that many parents appreciate being able to take a break every now and then, but parents of a child with autism may not be able to.  If their child wanders or elopes, that parent cannot take their eyes off their child.  If their child is non-verbal or non-communicative, the parent may not want to leave their child in the care of someone else, especially if it’s a new person.  If a parent is able to take a break, it may be because the person they’ve entrusted their child to is a reliable family, friend, or a hired caregiver.  If you’d like to offer to be that family’s reliable help, learn what needs to be done and offer to be that person.  Even if it’s coming over a few minutes at a time, learn the routine.  Learn the stims.  Learn the triggers.  Learn the signs if the child uses sign language or become familiar with the communication device if they use that.  Learn how to help, and do just that.  If it’s too much to handle, because some of the care the child requires just might be, don’t give up on helping.  Find another way to be there for the family. 

2 – I have very kind-hearted friends who tell me after they’ve made a donation to an autism organization and that they’ve donated it in Ronan’s name.  Donations are great!  But some organizations don’t give back to individuals in need.  Learning that the money won’t go back into the community or to a family affected by autism can be disappointing.  So, before you give away your hard-earned money, ask the family where they think a donation will be best served and consider following the family’s request.

Continue reading "6 More Ways to Help During Autism ACTION Month" »