http://www.njblackcaucus.org/members/

Contact legislators this morning to explain that S2173 discriminates and segregates schools. Be concise and respectful. The vote is today. This is a bellwether moment. Ring it loud. 

By Cathy Jameson

Last Monday, I was able to talk to someone on Ronan’s team about a few things, including getting a conversation started about guardianship.  That isn’t her area of expertise, but the nurse was able to offer some useful advice that I will look into.  This is the same nurse who’d asked me what medical goals I had for Ronan when I met her in 2018. Back then, my goals were to stop the seizures and to help Ronan regain speech.  Since the seizures have continued, albeit, less in frequency thankfully, and since speech has yet to return, I kept those two goals current for 2020.  I didn’t ask if I could add another goal when the nurse came to update Ronan’s file, but I added one more anyway:  to help Ronan communicate more.  

Ronan can communicate, which is a huge blessing, and does so through a variety of ways.  As a non-verbal preschooler, he figured out that using sign language got him what he wanted.  As he aged, we discovered that Ronan could read, so we filled our house with print-rich items—flashcards, large-print picture dictionaries, and post-it notes were plastered throughout our home.  We labeled every single thing we could label.  Doing that helped.  Ronan read everything eagerly.  Then he began to write.   He also started to type.   He can and still does all of that.  So why make a communication goal?  

Because I want to know more.  

Ronan is a simple kid.  Simple things make him really happy.  He can tell us that he’s happy with a smile, with a laugh, or by typing out h-a-p-p-y.  But sometimes, he gets sad.  He doesn’t tell us why he gets sad though.  And he can’t share why something is bothering him either.  We can usually deduce that something set him off, but if we don’t figure out what did, negative behaviors have the chance of creeping in.  That can make life more complicated. 

One negative behavior, if not diffused, can lead to more negative behaviors.  

Not wanting those to happen, my goal this year is to help Ronan communicate more...and to communicate better.  He does such a good job already, so I’d like to add new opportunities.  I haven’t yet figured out how to do that, but I’m determined to read and learn some strategies.  I am most curious to know what other kids like Ronan have done to be able to answer the WHY questions he doesn’t answer:

Me:

By Cathy Jameson

It’s the sixth, and I’m finally ready to start January.  I’m aware the new month has already started, but it usually takes me a few days to get every appointment, every sports event and every outing listed on our big family wall calendar.  Once everything is on the calendar, I breathe a little sigh of relief.  Sometimes, I’m completely organized for the month ahead.  Other times, I’m far from it.  

Prepared or not, each time that I turn a calendar page over, I get a little excited.  I look at what we’ve accomplished in the last four weeks with a big smile.  We’ve done so much!  That’s a good feeling to have.  Wanting to keep the momentum, I look at what’s recorded for the next month’s activities and add anything new that’s popped up.  A different feeling come over me this time as I scan the page – Holy smokes! We have so much to do.  Putting it back on the wall where we can all see it, I walk away from the calendar hoping that I haven’t forgotten anyone or anything.  

My expectations are great.  They have to be.  There’s lots of us Jamesons living here in our home.  While we are one unit, each of us have our own things going on.  If I don’t carefully plan for what’s coming up, someone’s practice, game, or appointment could get forgotten.  Being forgotten is almost as bad as double booking myself, which I’ve accidentally done before.  So as not to make any mistakes, I also try to plan farther out than just the next four weeks.  I did that last week when I turned multiple calendar pages to add birthdays, anniversaries, six-month follow up visits and more through to the end of 2020.  I know I’ll be better prepared months down the road when I see the reminders I jotted down this week.  

Peeking at the rest of the year wasn’t a bad idea.  As I got closer to the final months, I knew that we’d have both a countdown and a count up ahead.  Ronan turns 18 this year.  18!  

T-minus 11 months to adulthood.  

T-plus(?) 11 months to guardianship.

Ronan’s birthday will certainly be joyous.  We’ll celebrate it by taking Ronan out to his favorite restaurant.  We’ll shower his with gifts and remember all the good that he’s brought to our lives.  Besides carrying on our old, standby traditions, if Ronan continues to need the care he needs today, his next birthday will include a new beginning—that little thing called guardianship.

I’ve yet to read everything there is to know about the transition Ronan, and we, will experience when he turns 18.  I’ve heard a lot, I’ve seen a lot of parents go through the process, but I still have much to do to prepare for it.  Petitions, trusts, and a care plan are top of the list.  Another list, this one of people to talk to, will also have resources of local and state agencies I’ll want to check out.  Several of the people on that list, including one whom I’ll get to speak to as early as tomorrow, are already very familiar with my son and his intensive needs.

By Cathy Jameson

A couple times this past week, I’ve seen news sources sharing their top 2019 stories.  Some shared a list of their Top 10 in one post while others offered a daily recap over the course of a few days.  I’ve done that here on Age of Autism a few years ago, and thought it would be neat to do that again.  But life got too busy and prevented me from doing anything like that this year.  Not wanting to ignore all that’s been accomplished in the last 12 months, I want to propose something different.  Instead of us here at AofA sharing our top stories, can I ask that you share something amazing that happened for you or your family? 

We’ve been able to build each other up before, so tell us about your favorite moment of 2019.  I’ll start with something that’s been making me smile ever since Ronan accomplished it, then you leave your something awesome in the comments below. 

Not only did Ronan indicate that he is aware of toileting needs in 2019, but he did something really cool with his siblings about 3 weeks ago.  Now, those outside our community may not understand why we all leaped for joy the day that Ronan did this, but we are still all sorts of giddy thinking about it.  That’s because Ronan keeps doing it.  What does he do? 

Ronan comes up to us, peers deeply into our eyes, then, ever so slightly touches our nose.  Staring straight into our eyes a few seconds longer, he then moves his nose a little to the left and a little to the right.  Because he’s doing nosies!!!  It looks absolutely ridiculous and incredibly silly, but he finally understood how to play the nosey game.  Like that toileting feat, it only took 15 years for Ronan to be able to play it.  It’s more than a simple game though.  It’s gaining attention from someone and it’s positive and sustained interaction with that someone.  More than anything, though, it’s endearing.

Note: The perfect patient turned 17 yesterday. Happy Birthday, Ronan! And thank you to Cathy for sharing her beautiful family and Sunday sermons of hope with each of us.

By Cathy Jameson

Before I sat down to look at the calendar last Sunday evening, I didn’t need to remind myself that we would have an incredibly full week ahead.  I already knew we would.  Besides the kids’ usual events and Ronan’s scheduled weekly therapies, I had my own appointments to get to starting first thing Monday morning.  Knowing I couldn’t be in two places at once, my husband offered to take the morning off.  Having just come home late Sunday night from being gone for 10 days on two back-to-back work trips, I welcomed the break he’d provide by getting the kids up and ready for school.  I’m never up before 6am, but I was actually grateful for the few minutes of peace and quiet I got before walking out the door. 

I had other places to run to after my early-morning appointment was done, so I continued on.  Thanks to having that alone time, I got some Christmas shopping finished.  People often ask me how I take care of everything plus myself with all that we have going on.  I don’t have a perfect answer, but tell them that somehow, usually with the grace of God, things get done.  I wouldn’t realize just how much I really do until a few hours later. 

Midday, I received a phone call from one of Ronan’s caregivers.  She never calls.  Ever.  We do all of our communication via text.  Seeing her number flash across my screen made me think something was wrong.

Something was terribly wrong.

Ronan was at one of his therapy sessions when he began to have a problem which sounded like it might require medical attention.  I was still out and couldn’t get to him quickly.  But my husband could.  Instead of just taking the morning off, he’d been able to take the whole day off.  With him closer to Ronan than I, he met up with Ronan and his caregiver.  I’m glad he could do that because things would soon go from bad to worse. 

I couldn’t get to Ronan when that happened, so I met him and my husband at the ER.  The team of nurses and doctors were quick to help alleviate one of the problems, but we all agreed that with all of Ronan’s existing medical issues and complications, we were in the wrong place.  Ronan would need to be elsewhere with a team of pediatric specialists who could evaluate and treat him.  Not wanting to waste any more time, an immediate Emergency Room-to-Emergency Room transfer was ordered. 

I’ve never had to follow an ambulance that was transporting one of my children.  I hope I never have to again.


 

I didn’t know it at the time, but my husband had snapped a photo, too.  There’s me following the ambulance Monday night.

By Cathy Jameson

I remember this day so clearly – like a roller coaster ride, it’s got several ups and downs, and in such a short time span, too.  Originally written a few years ago for family and friends, I wanted to share it here today. 

---

Once a month, I get an alert in my inbox.  Like clockwork, the company that we get Ronan's diapering supplies from reminds me that it's almost time to re-order his supplies.  Since life is a tad bit busy for me, I appreciate the reminder.  

As usual, since it was almost time to submit that order, the email was sitting in my inbox.  As usual, though, I forgot to check my email.  I didn't miss out on placing the order because I got a phone call reminder about it this morning.  "Good morning!" a cheerful soul bellowed.  "I'm calling about Ronan's diapering supplies.  It looks like he's due for his next shipment.  Would you like me to push the order through?"

It was only 9:15 a.m. and way too early for me to be as chipper as she was, especially on the phone, especially with a stranger, and especially after the tough week I’d been having.  Taken aback at how happy this person was made me smile though.  I wasn't about to be the one to squash her happiness, so I gleefully replied, "Oh, yes, please!  I was just thinking I should check to see if that email reminder had been sent.  It's been just about a month since you all sent the last one, hasn't it?"

"Yes, ma'am,” she concurred. “It has.”

"Well, then.  I'm glad you called," I said still smiling.

"So, same address, same phone number, same information as usual?" the representative inquired.

"That's right.  Everything is the same," I answered.

"Good!  So has Ronan nearly exhausted the supply we sent last month?" she inquired.

Nearly exhausted, like his mother? I wondered.

"Yep!" I said.

"Great!  Let's set this order to go through for him now," she said.

"Perfect!  Thank you," I added.

After saying good-bye and hanging up, I smiled once more.  What a great attitude that gal had.  She did her job well, and I could tell she was not just happy in her position but proud of the work she was doing.  I do my job well (most of the time), but I don't always have the best attitude.  I can tell that, and those around me pick up on that, too.  I know I need to work on changing some of my attitude around, so I mentally added Have a better attitude like the diapering service rep's attitude! to my To Do list.  Then I set my attention back on Ronan.  I was packing his things that he and his caregiver would need for his day out, which included getting to one of his weekly therapy sessions.  Before I could get his backpack completely ready, I got another phone call. 

By Cathy Jameson

Every week is a busy week for our family.  With five kids, we always have lots going on.  Last week was no different.  Even though we had only one after school activity on the calendar for Wednesday, a basketball game, it would be our busiest afternoon.  The game would start a little bit after school got out, but before I could go to it, I had to go back to our neighborhood.  A neighbor of ours had asked Izzy to check on their dog.  If we timed it well, I could get her to our neighbor's and then to the game with 5 minutes to spare.  Halfway to the neighbor's house, I said, "Maybe I'll use the bathroom at home before we go back out..."  

Saying that out loud made me absolutely have to use the bathroom.  

So, Izzy and I made a new plan.  Instead of me waiting at the neighbor's with Izzy while she walked the dog, I would zoot to our house with Ronan, who’d come with me to pick up Iz, and use the bathroom.  She would walk home, change out of her school clothes and grab a snack to eat on the way to her little sister's game.  She'd have time.  As long as nothing got in the way.  

We live in a pretty decent area, but as we drove up our neighbor's street, we saw a stranger a few houses down.  It gave me an unsettled feeling seeing him.  She didn't say it at the time, but Izzy had gotten a weird vibe when we drove past him.  Mother's instinct told me not to leave my daughter alone as she would normally walk the dog past the house where the man was.  So I parked the car as she took care of the dog.  I definitely had to use the bathroom by then, but it would have to wait. 

By Cathy Jameson

Every few weeks I jump online and check out NVIC’s latest news.  A fantastic resource, they’ve done a great amount of footwork to keep their supporters informed.  Most of us who follow NVIC had not been, at one time or another, fully informed by medical personnel we once trusted.  Our kids were harmed because of that.  Never wanting to repeat that, I’m thankful that the group’s leaders and many volunteers created the platform that they did.  That platform includes being able to look up current legislative information.  Even if a bill they’ve posted doesn’t directly affect me or my family, the knowledge they share about it is a benefit. 

Take, for example, when California lawmakers introduced SB276 earlier this year.  Families in California communicated quickly within their local and state message boards when they learned of the bill.  Those efforts helped educate more residents, including many who did not have a child with a vaccine injury.  Thousands of families came together instantly.  NVIC, and other advocacy groups as well, picked up on news of SB276 and made sure the rest of the country knew that fellow US citizens’ rights were in jeopardy.  Within hours, hundreds of thousands more people beyond the California borders were aware and ready to mobilize. 

While that swift action did not help the people of California, Americans from one coast to the other stayed informed and promised to do whatever they could from a distance.

Image sources: the internet

Not soon after, friends in New York went to bat against their legislative leaders.  With how unnerving it was to see Californians and then New Yorkers be quickly striped of their rights, I began a new habit.  I started checking on several states’ legislative activity.  I do that faithfully now every few weeks.

Image source: NCSL.org http://www.ncsl.org/research/health/school-immunization-exemption-state-laws.aspx

Something I’m specifically searching and watching in state legislative databases are pre-filed bills.  Those are pieces of legislation will be proposed well ahead of when the state’s next session begins.  Like anything that can be turned in prior to a deadline, time is on the side of representatives and their staffers.  They’ll be able to organize, document, and prepare a bill weeks, if not months, before it can be introduced on the floor.  Some states will limit how many bills can be documented.  Other states will also only allow a certain number of pre-filed bills per state house or state senate member.  Regardless, it’s always good to know what our elected leaders are doing.

By Cathy Jameson

A friend of mine shared a slew of positive messages on one of her social media accounts.  It took me a few days to realize she was posting one per day during the month of October, but that was because I took a short social media break.  Jumping offline is always good for the mind.  It can be very good for the soul also. 

Once I logged back in and saw the upbeat messages again, I looked forward to seeing the daily suggestions she shared.  Topics like keeping hopeful, setting practical goals, and finding joy every day were peppered on her page.  I wasn’t always in a good mood when I jumped online, but after seeing those short, inspiring messages, I would take a few minutes to think about something positive.  Be it something my kids did that made me smile, or thinking about a big step Ronan finally made, I was grateful for the reminder to stop, reflect, and be thankful.  As the Thanksgiving holiday approaches this week, I thought it would be a perfect time to share just a few things that I am thankful for, too.   

While I’m certainly not grateful for my son’s vaccine injury, I am thankful that I am more educated because of it.  I fully admit that I didn’t know enough when my children were younger.  A lot of precious time and more was lost during those early years, but I am thankful for what I’ve come to realize.  With every realization, I now know better what to do and what not to do. 

With everything I’ve experienced – both the good and the bad - I am thankful that I learned how to advocate for my son.  The knowledge I’ve gained in the last decade is incredible.  It’s more than I ever could have imaged I would have to learn.  What I’ve learned has helped not just Ronan but all of my children.  While my typical children don’t need the same type of assistance their brother needs, they’ve gained a unique perspective watching me and my husband take care of their brother.  Because of what they’ve witnessed and continue to witness as Ronan’s siblings, it’s encouraging to hear my kids become more vocal in class and within their circle of friends about certain topics, like vaccines and the need for exemptions.  I’m thankful that they know the truth and are talking about it.  They’re advocating for themselves much sooner than I expected them to have to.

I am incredibly grateful for other advocates, too.  To those who paved the way before I came on the scene, like Barbara, Kim, Ann, JB, and Ginger, thank you.  From the bottom of my weary heart, I would not have known which direction to go had it not been for the brave moms and dads who started the conversation.  Thanks to all who keep that convo going.  From our old Yahoo! Group days to the several private FB groups that are still going strong, you will have my respect and admiration. 

Where I’ve scaled back some of my efforts within some of those groups, I see new names, new faces, and new energy surfacing in our community.  When I’ve had the chance to sit down at the computer, I am in awe when I scroll through my newsfeed.  People like Joshua Coleman, Hillary Simpson, and the leaders in state medical freedom groups, like Texans for Vaccine Choice and like Latinos for Medical Freedom, leave me speechless.  They have a zest for life and liberty that is unbelievably refreshing. 

By Cathy Jameson

70 below.

No, we're not talking about the weather today.

My child has autism.  It’s the non-verbal regressive form of autism.  If he remains as cognitively delayed as he is, he’ll need life-long care.  We’re ready to provide that.  Thankfully, other groups exist to provide the kind of care he may need.

Local agencies advertise that will work with families like mine.  They can help us to get the sort of support children like my son could need as he ages.  With how much support we anticipate Ronan might require, tapping into local and state service is a godsend.  But the process to secure those services?  It’s lengthy and daunting.  I know this.  But nothing could prepare me for the emotions that came over me as I started the process. 

I shared the process several years ago with family members which is recounted in the post below.

 

I played phone tag a few weeks ago with a representative from an agency who said she can assist me.  Responsible for screening incoming clients who may need long-term special needs services, I hated to miss her return phone call.  In our area, the wait list for services isn’t just a mile long; it’s years long.  According to other parents, it’s at least 5 years long.  So, when the representative and I were finally able to connect a few days later, I made sure to be prepared.  

I plugged Ronan in to his favorite activity - the Wii.  It would surely keep him occupied while I was on the phone.

I had my list of questions ready.  There were many.

I had documents close by to reference.  The stack was at least 2” high.

I had my calendar open.  I was ready to cancel everything from here to next December to make sure Ronan got an appointment.

We started the phone call with pleasantries and then got down to business.  I explained why I’d called her office earlier.  I have a son…he has autism…he has several medical issues as well…I understand he may qualify for services…I believe that there’s a wait list…can you tell me what I need to do to get him on that list?

Note: Cathy has the weekend off with her beautiful family. One sentence from this post she wrote in 2016 caught my eye. And felt like a punch to my stomach. "People live in the society they build." What have we built here in the USA. A culture that protects everyone except the vaccine injured. A country where the government gleefully denies basic constitutional rights in favor of industry. A nation that exalts celebrities and pretends to care about victims. A population unable to stick to a story for more than a screen shot - the result is the major stories that impact us Jeffrey Epstein did not kill himself are quickly forgotten and buried. We live in the society we built. Lord help us. XOX  Kim

By Cathy Jameson

Every evening for the last two weeks, I’ve read a page from a book called The Jesse Tree.  Bought years ago when I was still teaching, the book rests on a shelf in my living room for most of the year.  Filled with hope and thoughtful reflections, I look forward to using it with my own children starting the first week of Advent.  The book is very simple and helps us remember the reason for the season.  Read aloud right before we eat dinner, the kids learn something from it.  Most days, I do, too. 

The book I have encourages conversations about Jesus, about His lineage, and about how we’re called to serve others in His name.  The messages are quick and concise, and the symbols that accompany each story are meaningful as well.  The very first symbol is a family tree.  The tree’s branches are empty on day 1, but the excitement of which story and which symbol will be next keeps my kids interested.  Ronan isn’t as in tune as his siblings are, and he offers no input when I ask the kids about what they think the next story will be, but he sits and listens to the chatter around the table each night. 

One message that popped off the page at me on Tuesday evening had me going back to meditate on the passage and the short prayer that accompanied that day’s devotion.  The reading was from Exodus, the reflection was about Moses and the people of Israel, and the symbol was the Ten Commandments.  But it was something else that the author stated that caught my attention: “People live in the kind of society they build.” 

How true. 

As a child, the society that I envisioned I’d be living in as an adult is much different than the one I am living now.  Plus, never did I ever think I’d be part of two societies–one where my typical kids hang out and one where my child with special needs hangs out.  Sure, we crossover, but many times Ronan will stay in his own world while his siblings frolic and thrive in another.  As a family, we try to bridge the two societies as much as we can.  Ronan joins the siblings at their sporting events.  They join him for some of his therapy sessions.  They share some time together which we all find inspiring.  Some things shouldn’t be shared, though, like when Ronan becomes aggressive and attempts to pull his sisters’ hair.  We work through those terrible times always praying that positive encounters will be right around the corner. 

As a child of the 70s, I knew nothing about autism.  As a teen in the 80s, I still hadn’t heard of the disorder.  As a teacher in the late 90s, I had yet to see a student who struggled like so many children do today.  By the 90s, I’d finally heard of autism, but it wasn’t until the next decade did my son’s autism introduce me to a society where I have become a long-term resident.   

Thinking about who’s helped me find my way in a place where I had no direction and that I had desire to be, I recalled past conversations with other newbie parents.  I remembered other parents, the veterans of the community, and their words of wisdom.  I also thought about the groups and companies that helped me learn how to help Ronan.  Honored to serve others, each person I’d encountered had become a beacon for me.  Their acts of kindness were forever etched in my heart, and each one is still very much cherished by me. 

By Cathy Jameson

Last week a young boy asked me if I liked Science.  I really don’t like it.  It was my least favorite subject throughout elementary school and high school.  Full of wonder, and incredibly smart, this kid thinks the exact opposite – he loves Science!  I didn’t want to squash his enthusiasm, so I took a second before I made a reply.  Something else made me pause, too. 

I was busy right before he approached me, but that’s not why the question caught me off guard.  The Science he loves is the same Science that made broken promises to me.  It didn’t just lie to me, it took everything from me.  That happened post-vaccination.  Science told me that childhood vaccines were 100% safe for my son and that his health would benefit from them.  Now non-verbal with seizures and regressive autism, my child is unable to function like this boy can.  I could tell this kid that at one point even though I didn’t like Science I trusted it, but then I’d have to explain why.  Not wanting to go into that intimate detail with a child I don’t know very well, I continued to think of a simple answer for his simple question. 

As much as I still wanted to say to him, “Nope.  Science stinks,” I kept that to myself and replied, “You know what, bud?  As a kid, I did not like Science at all.  But as an adult, I appreciate it.” 

That’s the truth. 

I do appreciate Science.  

But I’ll never be able to fully trust it. 

Satisfied with my answer, the boy immediately asked me a Science-related question.  It wasn’t complex or about vaccines, a topic I know well, but it was a question that I could not answer.  Stumped, I promised that as soon as I had time to do some reading I’d find some information for him.  He told me he, too, wanted to continue to find the answer on his own.  So we made a game of it – whoever could answer the question first wins.  There wouldn’t be a prize, just satisfaction that we’d learn something and wouldn’t be puzzled any longer.

By Raising a child with as many medical issues as my son has is no easy task.  That’s why we celebrate each and every little gain as they happen. Those are some of my favorite days.  Other days, like one we had last week when we hit a medical setback, I’m reminded of how this all started.  I’m not fond of those memoriesnor of the emotions that creep in when they resurface. 

My youngest was helping me clear the dinner table when she heard Ronan attempt to say something.  Attempting to speak again, I deciphered what it was that he wanted and then went back to cleaning up.  I glanced over at my daughter.  She was smiling. 

“Mommy, I wonder what Ronan’s voice will sound like when he talks.”

A favorite memory instantly came to my mind.  Chunky and with beautiful tan skin, Ronan was engaged.  He was displaying perfect eye contact.  He was sociable, happy and chatty.  Hisspeech hadn’t yet vanished in this memory of mine. I remembered hearing meaningful verbalizations and knew that new functional words were forming.  At this time in his life, Ronan’s eyes were full of wonder and were stunning.  His sweet voice captivated many whom he came in contact. 

I miss that husky voice of his.  I miss those bright brown eyes too. 

After cleaning up, I watched baby videos and looked through digital photos on the computer with my younger kids.  A special request of theirs, they love to see their tiny little selves on the computer screen.  They love it even more when I have time to sit down with them during this activity.  Mom!  Look at how small I was!  Oh, Mommy. I remember that toy!  Tell me the story again that goes with this picture.  I love hearing it.  It’s always a treat to hear my children giggle and reminisce about the “old days”.  Midway through that afternoon’s slide show, the image I had of Ronan and the sound of that husky voice flashed across the screen.  I smiled.  Then I ached.  I wasn’t prepared for what would come next.  I don’t mean what event that I had videotaped next in the home movie; I mean the onslaught of raw emotions that went through me. 

I told myself to stop watching the videos, because I knew that the more I watched, the more I’d wished I hadn’t started. 

Ronan was developing.  Until he wasn’t.

Ronan was talking.  Until he couldn’t.

Ronan was interactive.  Until he cared more about pushing one button over and over again on one toy than he did about us.  I didn’t see my cute, happy child in those images.  One photo after another, I could only see delays, lack of development and then no development whatsoever.  

How did I miss it? 

By Cathy Jameson

Today’s post is from a journal entry that I wrote shared elsewhere several years ago…

Knowing that a new hire comes with a good referral eases my mind.  That referral usually comes after I've asked friends, therapists, neighbors, coaches and my people in my church community if they know someone who's looking for work.  

The job?  Working with my son

Location?  In our home

Why?  Because he requires one-on-one support

When?  Now until...

We haven't always been able to hire someone that a friend has recommended though.  When that happens, if we don't find someone after reaching out as far as our rolodex of professionals and circle of friends go, I brainstorm ideas of where else I can look for qualified individuals who can meet Ronan's needs.  

One place a lot of families will use to find in-home help is online.  Since we have had more bad luck than praise reports using online classified ads, I knew that I wasn't going to go that route to find a new hire in my last search.  Others have been successful using services that match sitters/nannies/special needs attendants with families.  But I really wanted to go the old fashion route – by word of mouth. 

We lost a worker a few months ago.  I have been actively trying to fill the position since then.  After asking everyone we knew for some leads, I was not able to find anyone through word of mouth efforts.  I knew that I was going to have to look beyond my comfort zone to find our next provider.  

While looking through some ads placed by other parents in similar positions, I read that people were having some luck working with their local community colleges and universities.  I looked into that and discovered that some schools will offer to place their education, nursing or psychology department students in both paid and unpaid internships with families like mine.  We had not utilized an intern yet, but I would be open to that if we found the right match.  I thought that could be a really good idea, especially if it was someone who could learn and earn hands-on experience with my family.

Recently, a friend shared that she was looking for in-home help for her son as well.  Our boys are similar in that they are both non-verbal and require one-on-one assistance and supervision.  We were both going to have to hire complete strangers because she, too, could not find anyone within her circle of friends to help.  

By Cathy Jameson

Every now and then, I discover that someone I know has taken a piece of advice that I've offered.  I like learning that.  It tells me that my knowledge, or something that I’ve experience, was recognized and that it had some value.  It’s encouraging to know that some of my ideas have become someone else's stepping stone.  Every now and then, though, I discover that someone that I know has opted to forgo the advice that they’ve asked of me.  I know that no one is ever under any obligation to take my advice, but I have to admit that it hurts a little to know that something that I've share has been dismissed.  

It hurts a little bit more when I find that not only was my advice dismissed, but that a decision the other person made that went completely against suggestions that I offered.  

It hurts a whole heck of a lot when the advice, the information, the suggestions, and the decision that was made was about vaccines.  

That hurts the most because in that last situation, I was asked to retell how liability-free vaccines negatively impacted my son’s life.  To relive those moments - to hear myself talk about the vaccine injury, the regression, the loss of speech, and also the beginning of the seizures - to hear myself say out loud to the other parent, "If I'd known then what I know now..." there is no other way to explain what it feels like except that it hurts.  It hurts to learn that they’ve opted to go down that same path I now desperately wish I could’ve avoided. 

As much as it hurts, I have to remind myself of one very important fact:  I was merely being asked for my opinion.  And that my opinion is just that - my opinion.  I am not responsible for what someone does with it.  

I am not responsible for other parents.

I am not responsible for their opinions.

I am not responsible for their decision.  

I am not responsible for their actions.  

And I should not let their opinions or their decisions or their actions affect me.  But they do affect me.  They make me want to mutter under my breath.  To retreat.  To keep my mouth shut.  To hide.  

But I won't hide.  And I won't be quiet.  I won't stop sharing my opinions, my decisions, my actions, or Ronan's story.  Why?

By Cathy Jameson

After a very long week, my husband and I met up at a non-profit organization’s social hour on Friday evening to support their efforts.  With how busy last week was, he on a business trip and me managing the kids and all of their afterschool activities, it was also a nice date night for us.  Several times during the evening, together, we had the opportunity to share Ronan’s story.  When I find myself in a situation where I can talk about what happened to my son with a roomful of strangers, I make a decision – tell them some of what happened to him, or tell them every single, little detail of his life story.  

This time, I kept the story simple.  

Those who asked about him were told that Ronan has quite a few medical complications that require on-going care and treatment.  Some were sympathetic and wanted to know more.  So I shared a little bit more.  But not everything.  That meant, this time, I kept vaccines out of the conversation.  In the past, I’ve been much more descriptive like in what I recount below.  It’s an older story that I’ve shared elsewhere.  While I easily could’ve had this same exact conversation over the weekend, I wasn’t ready to go into every detail.  They’ll be other opportunities for that.  I’m sure of it. 

--

You subscribe to that?  Really??

I’ve witnessed a few camps in the autism community over the years.  There are those who adamantly believe that autism is caused by one contributing factor.  Some believe that it's many factors.  And there are others still who choose not to focus on the cause at all and instead call simply for more awareness.  Those in the first and second camps rally around education and prevention.  Those in the third prefer to focus their energy elsewhere.  Certainly other camps exist.  As far as I know, not one cause or treatment has been identified as yet. 

I don’t fall into just one camp.  Autism is a spectrum disorder.  I believe that several factors can lead to an autism diagnosis.  The more I’ve read over the years, the better a perspective I’ve gained about those factors and about the disorder.  When I'm asked about what happened to my own child, I share what I've read.  I also share what I know happened to Ronan.  

I had a conversation with someone about autism about two or three years ago.  After some small chit chat, the person I was speaking to asked me about my son.  He’d noticed that something was different.  The more curious he was about Ronan’s diagnosis, the more questions he asked. 

So, Ronan was typical at one point? 

When did he change?

What did the doctor do?

Can you trace it back to something...like an allergy, an illness?  Did he fall?  Did he hit his head?

For each question asked, I offer an answer.

Yes, he had stellar APGAR scores and had reached several milestones as a baby.  

But…Ronan changed over time.

By Cathy Jameson

Two recent occurrences prompted today’s Best of.  The first one was seeing my favorite grocery store begin their in-house flu shot advertising.  It was only mid-August when I saw the sign.  I thought it a bit early for their pharmacy to begin their flu shot campaign, but, like one doctor told me, “The flu virus knows no season; it doesn’t wait until winter to strike.”  She’s right.  Doctors and pharmacists who know that, and who don’t push the ineffective flu shots  on their customers each year, get my respect. 

Doctors, like the one who told my daughter last week to get every vaccine for every disease there is, do not get my respect.  My daughter let her own opinion be known after she was told that, but Fiona didn’t get the respect she should’ve gotten.  She said what she had to say in response but knew her knowledge and opinion would fall on deaf ears.  That’s reason number 2 for sharing today’s post. 

After a quick recount of the conversation she’d had with that doctor, Fiona and I looked at a list of vaccine ingredients.  We talked about how she could cite information differently next time should the opportunity arise.  Show the person the stats straight from a source they go to and will quickly defend – the CDC!  We both know how hard some vaccine conversations can be, especially when the other person in vehemently pro-vaccine and works in the Science field, but Fiona feels confident that she can defend herself better, and the science, next time.     

Since we are just at the beginning of what will likely be another flu shot advertising frenzy, it would be wise to read what’s in them.  Here’s just a sampling: 

Image: Vaccine ingredients; source CDC

If you have never looked at the individual ingredients of all of the liability-free vaccines that the US government state are safe and effective, follow this link to an appendix of the CDC’s Pink Book.    Injecting animal and human diploid cells, to name just a few questionable items, sounds far too risky to me and Fiona.  So do quite a few others ingredients, which I wrote about in today’s Best of, What’s In Your Flu Shot?

By Cathy Jameson

Years ago, this video made the rounds as the 2006 flu shot season got under way.  As much as I loathe this particular shot and the problems it caused my son post-vaccination, I couldn’t help but laugh. 

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

By Cathy Jameson

It is not enough that we do our best, sometime we have to do what is required. 

- Winston Churchill 

I saw that quote last week and immediately thought of parents in both New York and California.  Coming together to express concerns over their state’s proposed legislation, parents in both New York and California organized their efforts as soon as they learned what their legislators were doing.  As has happened before, the legislation would limit a parent’s right versus protect it.  Brave doesn’t fully describe those people who were willing to stand up against it.  Nor does passionate or determined.  In fact, with everything these moms and dads have already done, I can’t think of a word that would do them justice. 

Parents in both states were doing more than just standing up to illogical lawmakers.  They were doing more than just letting their voices be heard.  They were representing more than just their opinions and desires.  Facing their fears, standing up to elected politician, and making quite an impressive statement while at it, is not what they may have envisioned themselves having to do; but they did all of that and more.  That’s because if these parents didn’t stand up for themselves and for their children, legislators could quickly take parental and educational rights away. 

These parents did their best to protect their rights.  They did their best to protect their child’s right to an education, too.  But legislators in both NY and CA were successful with their plan – which took both of those rights away.  This time, with CA’s SB276, s doctor’s right to practice was also jeopardized.  Where they were once able to determine and write a medical exemption for a patient, that decision will now be up to the State. 

Those parents in NY and CA may not have thought that fighting legislation and close-minded politicians would be part of parenting, but they are doing that now because that’s what is required.  What’s required? 

-traveling long hours to the state capitals

-standing in long lines while waiting to gain entry into public hearings

-facing the opposition, many of whom were less than polite

-dealing with uneducated representatives and their staff

-being misrepresented by the media

It also meant mustering the strength to continue to show up even though those who should be listening and helping were doing the opposite, and quite possibly, had planned to do that all along.

By  Cathy Jameson

Last week I wrote about how filling out forms for myn medically fragile son of can sometimes do a number on me.  As much as I’d like to, I can’t escape them.  They are part of life with a complicated kiddo.  I thought I’d get a little bit of a break from having to fill out forms, but a new one showed up in my mailbox after that piece was posted.  

Oh, the irony.  

Since it was a renewal form, most of the information being requested was on file and was actually filled in on several of the pages already.  If all looked correct, I’d just need to verify what was there and return the paperwork to the agency.  If anything needed to be updated, though, I could cross out the old info and add the new.  The document was lengthy.  9 pages.  Double-sided.  Font size 8.  They were asking a lot.  Because of how detailed it was, and because of how someone royally screwed up a similar document a few years ago, I didn’t want to take any chances on the renewal form.  So I made time on a quiet morning last week to go over every question with a fine-toothed comb.  Then I called the office that mailed me the form.  Asking for verification about one section, I was grateful when a representative offered to update the information with me over the phone.  Supplying the answers over the phone would satisfy the renewal process, so I agreed to do that with the rep.

I thought filling out these kinds of forms on my own was hard to do.  

Talking through each question proved to be just as difficult.  

I couldn’t use my upbeat Not Yet replies like I was able to last week.  The answers for these questions and prompts needed to be specific.  They had to be factual.  Scrubbed of any hope, I wasn’t able to say cheerfully that Ronan was so close to finally being toilet trained after all these years! I could only say, “No, he is not independent on the toilet.”  In fact, Not Yet couldn’t be used for any of the questions on any of those 9 double-sided pages.  

Can he make his own meals?  “No, he cannot make a meal on his own.”  

Can he bathe or shower on his own?  “No, he cannot bathe or shower on his own.”  

When I initiated the phone call, I really did think getting this form completed would be easier.  I thought it would be faster, too. I thought I’d save myself some of the heartache that comes with parenting a medically fragile child. I was so wrong.  I had no opportunities to be positive.  No chances to share that progress is being made, even if only one tiny baby step at a time.  Every question, even if answered with a Yes, really meant No.  

Yes, my child is disabled.

By Cathy Jameson

Every few months, I’m asked to fill out some sort of questionnaire for Ronan.  Each form has several categories.  Each category asks multiple questions.  Each question builds upon the previous question.  To be scored as accurately as possible, I know that I need to answer every question as honestlyas I can.  Scoring is important as it can determine an updated treatment plan or therapy goal.  Even so, long before I’m given them, I dread filling out those forms.  It takes a lot of energy for me to start answering them.  It takes even more for me to return them.  I should be happy to finally be done with the task and give the sheets back to whomever has asked me to fill them out--a doctor, an educator, a therapist--but I find that it takes me days to return them.  The dread of getting the results or standardized score can be just as unnerving as was answering each question.  

At this point with how many assessments I’ve filled out, I should be used to this process.  

But I’m not.  

That’s because some answers are hard to swallow.  

Does your child… 

-toilet on his own

-make his own meals

-know how to budget for a shopping trip

As with many assessments, questions and sections become more complex.  On the first few pages, I can usually check off that Ronan can Always or can Usually perform whatever it is that’s asked:

My child will…

By Cathy Jameson

I was able to get some quiet time with Ronan’s younger sister late last week.  She’d longed for a mommy date for a few weeks.  I knew we’d soon run out of time to do a “just us” outing with a new school year quickly approaching.  My schedule was tight, but I was able to squeeze in about 2 hours with Izzy on Friday morning.  She and I got some errands done and were able to have some neat conversations.  The first one was my favorite. 

As we left the driveway, I started out with Three Things.  She was to answer giving only one-word replies to the following prompts:  Tell me three things that make you happy.  Tell me three things that make you smile.  Tell me three people you look up to.  Tell me three things you want to know more about.  Tell me three people you pray for… Izzy couldn’t stick to the one-word reply though with what makes her smile.  She’d answered ‘Ronan’s laugh.’  I told her that that sound was in my top three things that makes me smile, too. 

Izzy’s answers to the other queries were ones I expected her to say.  Names of her best friends, of her favorite family members and of fun events she’d enjoyed with those people peppered several of her answers.  The one where I asked her what 3 things she wanted to know more about didn’t surprise me either.  She replied:  ASL (American Sign Language), vaccines, and the human body.  Each of the topics have been part of hundreds of past conversations she’s heard here in the house.  Where Ronan’s big sister has had more chances to be vocal about those topics, both at home and with peers, Izzy’s been mostly quiet.  In our next conversation, I learned that she’s almost ready to talk about those three things. 

I said to Iz, “Those are interesting.  Can you tell me why you picked them?”

By Cathy Jameson

I went to the pool early one evening with 3 of my kids over our summer break.  We’d have loved for him to join us, too, but Ronan stayed behind.  Previous summers had him at the pool quite a bit.  He’s not interested in swimming as much as he used to be though.  He preferred to stay comfortable and inside that evening, so I left to take a quick dip in the pool.  Ronan can be flexible during vacation time, but why rock the boat?  He was happy, and when he’s happy, we’re happy, too. 

With Ronan not being there and with me not needing to constantly supervise him, I was able to actually swim at the pool.  I did that and also enjoyed watching my other kids play.  Each of them, including Ronan, are like fish to water.  It was so encouraging to see them have fun and to see them be so confident underwater.  When the kids swam to the deeper end, I floated around on my own.  That’s when heard something interesting.  

An older woman was talking with a couple who’d mentioned they had college-aged kids.  Maybe she was hard-of-hearing and couldn’t tell how loud her voice carried across the water, or maybe she didn’t care that other people beyond their small circle could hear her, but this older gal kept talking and talking.  Those of us not in earshot couldn’t help but hear what she had to say.  The more she said, the more I wanted to be part of the conversation.  I floated by and heard her mention Sharyl, as in Sharyl Attkisson. Slowing myself, I treaded water near these 3 people.  That’s when the older lady mentioned another name, Dr. Zimmerman, and continued to share that, as a retired pharmacist, she’d seen a lot.  She'd read a lot, too, including taking time to read about something called vaccine court.  ‘Why would a vaccine court exist if vaccines were so safe?’ she asked.  I nodded my head in agreement and said softly, “She’s right”, and swam closer to the group while preparing to introduce myself. 

I’d have to wait.  The retired pharmacist had much more to say.

‘Look at how many shots kids are getting now also.  Of course, times have changed and medicine has advanced.  But at some point, you have to listen to the parents.  Something’s happening to their kids after they get all those shots.’

“I couldn’t agree more,” I interjected while the gal waited for the couple to reply.  They didn’t say anything, so I continued, “I'm one of those parents, and my son is one of those kids.”

No one spoke, but three sets of eyes now stared straight at me. 

Before adding anything else, I asked myself, Do I keep talking, or do I sheepishly swim away? Years ago I never would have said anything, but as time’s gone by, I’ve gotten more vocal with complete strangers when vaccines come up.  Another minute went by with no one talking, so I took the chance and continued. 

Looking at the older woman, I said, “I love Sharyl's investigative research and really appreciate what she reported.”  I added that not only is she thorough in her news reports, but shared how brave I thought Sharyl was, especially with all the censoring we've witnessed in corporate news outlets.  “She’s shed light on things that the mainstream media won’t touch.  If more people spent time reading up on the topic, like that vaccine court exists, parents may be able to make different decisions about vaccines.  Our doctors didn't tell us much when my son was being vaccinated, nor after he was injured by vaccines.  I learned what I needed to know too late and only after reading on my own...like you mentioned you did.”

‘It's incredible what I’ve learned,’ the older lady offered. 

Note: Cathy is enjoying a well deserved vacation with her family. She thought you might enjoy this best of from Spring, 2017.

By 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 news 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?

by Cathy Jameson

That title above is the G-rated version we used to use here in the house. Change that last word to something else for the adults, and it’s the same message. Couldn’t figure something out? Google that stuff. Arguing with someone about something and needs facts to back up a claim? Google that stuff. GTS worked when we were out of the house also. With how readily available the internet is on mobile phones, long gone are the days of having to wait until you’re back home to look up information in a book. No need to trek to the library to scour the reference section for data either. One quick online search is all it took!

I’ve shied away from using Google, but this FB memory of mine reminded me just how much Googling I’d done over the years.

Me: Do you have any recommendations?

Nurse: No. You can do your own research. You know your child's needs.

Me: < stifles a smile >

! ! !

When you walk into a medical facility and you're not sure if you should open your mouth or not on certain subjects but you bravely go for it and the medical person sees that you, the parent, are a completely capable, competent human being who can GTS* on their own....all the yesses.

Me: < high fives self > ✋ < smiles > :) Okay. Thanks.

*Google That Sh!t

by Cathy Jameson

When I saw this image and the accompanying questions a few weeks ago, I immediately shared it with my circle of family and friends. Many of them could easily answer the 40 questions. I’d be more curious if their doctors could. I’d guess a handful of them could. I wonder how many could do so without looking any of the information up though.

I was told at a young age when I started school that no question was a dumb question. I believe that to be true still today, especially when the question pertains to vaccines. Every question I saw on @chemfreekids’ page are important ones to ask. Even if someone isn’t contemplating vaccines, knowing each of the answers is important, too. Vaccines are no longer a private topic. They’re now part of everyday discussions and have become a weapon of choice for legislators. I’m all for discussing liability-free vaccines, but I can’t support vaccine mandates some legislators are vehemently pushing. I can never support withholding education or denying employment based on someone’s vaccine status either. But that’s what’s happening here in the U.S. Before more people lose their rights, it’s time to become familiar with accurate vaccine information. I think reviewing and being able to answer the following questions is a good place to start:

“How much do you know about vaccines? Here are 40 solid questions to ask before you move forward with any vaccine. 

1. Name 5 vaccine ingredients.
2. What is MRC-5?
3. What is WI-38?
4. What is vaccine court?
5. What is the National Vaccine Injury Compensation Program?
6. What is the 1986 National Childhood Vaccine Injury Act?
7. How has the CDC schedule changed since 1986?
8. How much money has been paid out by vaccine injury court?
9. How many doses of how many vaccines are in the CDC schedule between birth and age 18?
10. Do vaccines contain aborted fetal tissue? If so, which vaccines? And how many aborted babies were needed before they found one with the virus necessary to create the vaccine?
11. Do any vaccines contain dog, monkey, pig, and human DNA?
12. What is an adjuvant?
13. What is an antigen?
14. Which arm of the immune system do vaccines stimulate?
15. Which arms of the immune system do natural diseases stimulate?
16. What is transverse myelitis?
17. What is encephalopathy?
18. What is the rate of autism in 2017, what was it in 2000? What was it in 1990?
19. What is glyphosate and is it in vaccines?
20. If your child is injured, who will take physical, emotional, and financial responsibility?
21. What was the Supreme Court’s statement on vaccines in 2011?
22. Can you provide a study showing vaccinated vs. unvaccinated health outcomes?
23. Can you show me a safety study proving it is safe to inject multiple vaccines at one time?
24. What is shedding?
25. Do vaccines shed? Which vaccines can shed for up to 6 weeks?
26. Which vaccines are live virus vaccines?
27. What is the VICP?
28. What is SV40?
29. What is MTHFR (methylenetetrahydrofolate reductase)?
30. What is an acceptable amount of aluminum to ingest per day and how much is injected via the hep B vaccine on day one of life? 
31. Can someone who was vaccinated for pertussis still spread pertussis after being exposed to it? If so, for how long?
32. What is the death rate from measles in the US from 2005-2015? From the MMR vaccine in same time frame?
33. What does attenuated mean? 
34. Where can I find information about vaccines?
35. Are there vaccine consent forms?
36. Can the vial stopper cause allergic reaction?
37. Can there be serious reactions to vaccines?
38. What is NVIC?
39. Is there any compensation for physicians who have a certain percentage of their patients vaccinated?
40. What is VAERS?”

How’d you do?

I can answer all but one of those questions above.

To our faithful readers, care to answer one in the comments below? Be sure to leave references or a website for further reading if you do. I’m hoping that those new to vaccines will be inspired to continue to read and learn as much as they can before they find themselves face-to-face with their child’s doctor. Vaccine choice doesn’t exist like it used to, and parents need to know that sooner rather than later.

I wish that I had been asked just one of those questions before my child was vaccinated. I’d imagine one questions could’ve sparked my curiosity to read about vaccines. It wasn’t until after my son was vaccine injured did I bother to do that. Now, after reading and pondering those 40 questions, I could think of a few more that I’d want a new parent to think about. Surely some of you have thought of other questions as well, so leave that thought in the comments also. It’s through others’ stories and through shared resources that I’ve gained the knowledge that I have. I know that’s true for many of us.

To those who constantly question, who bravely answer, and who continue to educate the public and the media about the risks that liability-free vaccines carry, thank you.

By Fiona Jameson

This was one of the essays I wrote for a college application.  During the application process, I was asked to answer a prompt:  How do you think you will be challenged in the STEM field?

-- 

I find myself constantly challenged when it comes to being labeled as someone who’s against science.  If you really knew me, you would know that that does not describe me at all. 

As I grew up watching my brother regress from being a typical child to losing skills and now being completely dependent on my family.  My outlook on what we were told to believe, that the greater good always outweighs individualized patient care, had obviously changed the sicker my brother got.  While my belief does not correspond with the beliefs of society, it is what I know to be true. Over the years, I’ve had to defend my views, including the fact that my brother’s childhood vaccines affected his development.  I was able to do that in several classes and even had the opportunity to present them in a project at the national level.  I may not have changed anyone’s mind, but if there is anything that I have learned about my brother’s experience, it’s that I should speak up when given the chance. 

While there is still much to discover in the STEM fields, to include why some people are more affected by pharmaceuticals and their known side effects than others, we must never assume that the science is settled.  How can it be?  Scientists strive daily to know more about natural phenomenon and how it relates to the world.  I am fascinated by that and am excited to continue to pursue my love for science and learning at the next level.  

--

Fiona was accepted into several schools and was offered a spot in two university’s Honors Programs.  She plans on pursing a Biology major and will follow a pre-Med track. 

By Cathy Jameson

Ronan was scheduled for a procedure last week that would require sedation in a clinical setting.  Procedures, sedation, and medical clinics make Ronan nervous.  All of that makes me nervous also.  Some of my worries were put at ease though.  The day before the appointment, a nurse called to give me a rundown on the procedure.  I was grateful for the chance to hear ahead of time what was going to be expected of Ronan and of me.  I was very happy that the pediatric critical care team knew much of Ronan’s past medical history, too.  Their knowledge and understanding of his seizures, sensory issues, and his inability to communicate verbally put my mind at ease.  So did quite a few statements the nurse made during out 30-minute phone call. 

Besides writing down a few notes during the call so that I could share them with my husband prior to our trip to the clinic, they were such good and reassuring statements that I wrote a few of them down:   

We understand the potential complications and that Ronan’s going to be nervous.  We’ll meet Ronan where he is…that means we’ll work with what he can do and do that at his pace.

You know your child best, Mom.  You know him better than I know him.  If things get too overwhelming, or if he has tried and tried again but can’t go further, you’ll know when enough is enough and be able to tell us. 

We follow the scope of practice, but we will need you to continue to advocate for him like you already do. 

We’re working with him because he’s considered a critical care patient, but we’re here for you, the parent, too.  We’ll proceed once Ronan, and you, are ready for us to. 

I don’t want to make any promises that I can’t keep. 

If I haven’t answered all of your questions, because you may think of some after we hang up, call or text us any time between now and your arrival tomorrow.  No question is too difficult.  If I or one of the nurses can’t answer it, we’ll find someone else who can. 

Most of the questions I had before the nurse called were answered in that call.  But she was right.  After my husband and I reviewed the pre-op notes I’d taken, we discovered we did have a few concerns.  None were too pressing that we couldn’t wait to ask the team when we were with face-to-face the next day.  I had already been given Ronan hints that we would soon be going to see the doctor, so I took the info I’d written down and shared it with him.  I didn’t know how much Ronan would understand, but I needed him to know the basics:  tomorrow was the big day, he’d have to fast until after the procedure, he’d meet some new doctors and nurses, and that mommy and daddy would be right there with him the entire time.  Ronan signed ‘yes yes’ and then did the Sign of the Cross.  Anytime he hears the word doctor, he asks us to pray, In the name of the Father, and the Son, and the Holy Spirit…Amen. 

When we gathered for family prayers later that evening, the siblings all prayed for Ronan and his big day at the hospital.  We prayed for the medical people we’d encounter – that they’d have compassion, and we prayed for Ronan – that he would do well with all the poking and prodding we knew he’d be subjected to.  Most of Ronan’s medical journey has included a lot of questions.  Why this?  Why that?  Constant wondering, constant worrying and knowing that not every test or procedure will come with answers, just more questions, can be unsettling.  So we also prayed for good test results, which could take a few weeks to receive, and that we’d get some useful answers from them. 

True to their word, when we arrived the next day, the critical care team was ready for Ronan.  They’d thought of even more accommodations for our son than the ones I’d mentioned he’d need while I was on the phone the day before—dimmed lights, the offer of warm blankets to keep Ronan warm in the chilly exam room, and use of an iPad to keep him happy.  While getting Ronan settled, they also lowered their voices knowing full well that even though Ronan wears noise-cancelling headphones, he can hear everyone and everything going on around him.  Respecting that he was already nervous, they did not want to be the cause of any more worry for him while talking to us about medication side-effects and potential risks associated with the procedure.  They thought of more than others would’ve thought to have on hand.  Extra effort was already offered, but even more would be required from the medical staff present once the procedure began. 

Once all formalities and were complete, though, the team asked us to be the lead. 

Us?  Me?  Ronan’s Dad?? I could’ve balked.  I could’ve said, That’s not our job!  You’re the nurse, the doctor, the resident, the medical tech, not me!  Do what you’re supposed to, and let us follow your directions.

Source: Inhabitat.com

By Cathy Jameson

I never liked Pink Floyd until I was an adult.  As a child, I thought their music was ‘old people music’.  I apologize for being so naïve.  I liked several other artists from the 1960s and 70s when they were very popular when I was younger, but it wasn’t until I was an adult myself that I grew to appreciate Pink Floyd.  I don’t know if it’s the lyrics, the instruments, the vocals or a combination of all of that that finally drew them to me.  When I hear a Pink Floyd song now, I am immediately mesmerized so much so that I tune everything else out to listen to what’s coming from my speakers.  That happened to me when I heard Us and Them last week. 

Us (us, us, us, us) and them (them, them, them, them)
And after all we're only ordinary men
Me
And you (you, you, you)
God only knows
It's not what we would choose (choose, choose) to do (to do, to do)…

Maybe it’s because I’m older, but the lyrics of that song speaks volumes to me now.  I’m sure being the mom to a medically-fragile child has something to do with it, too.  I didn’t choose what happened to my child, but consequences from events that I allowed, that contributed to long-term medical problems, affected him poorly.  Those consequences affected both of us, and may continue to, for the rest of our lives.  

In the beginning, I thought I could live with the outcome of what happened to Ronan.  He lost skills.  He lost the ability to speak.  Since he had them once before, I figured I’d just work to reverse the damage the vaccines caused and get him those skills back.  Ronan was young.  Time was on our side.  It was just a few vaccines.  Surely, recovery was a possibility.  And I thought I was being naïve about my taste in rock bands…ha!  Recovery is possible for some individuals, but it hasn’t happened for my child.  It is a hope for our family, but I have yet to find full restoration for my son. 

Before my son got sick, I would’ve consider the people we were to be assigned to work with me on an Us and Them level.  In the early years, we saw plenty of specialists and spoke to countless medical people.  But the more intense things got as I looked for help and for answers, Hey, doc, could it be the vaccines that caused this??, it became an Us versus Them situation.  It still is that way when I approach certain people, and I know that other parents have faced similar experiences. 

Us Parents fighting The Establishment. 

Be it a doctor, a nurse, a school nurse, a therapist, a school administrator, a teacher, or lately, a politician or elected official, some people take pleasure in saying no to moms like me.  It takes a lot of patience, time, knowledge, and emotion to raise a special needs child.  As time goes by, one would hope that things might have gotten a little bit easier.  For parents in our community, it seems like some parts of life are getting harder.  We’re not just fighting for our kids’ medical needs and educational needs like in the early days.  These days, we’re also fighting for our rights, including ones that have already been established.  Instead of going forward with some people who sit in positions of power, it feels like we’re going backwards.  Until Us vs. Them dissolves, I don’t think we’ll get a chance to make too much progress.  I do believe that it could be better for both sides.  But the fact that there are “sides” negates that possibility. 

Us and Them. 

Will we ever be able to go back to that?  Complete harmony hasn’t always existed in the world, but could we find time to have civil discussions?  To see eye-to-eye?  To treat each other with respect?  To set vaccine differences aside?  To work together and put children first?  With how politicized everything has become, to include vaccinations, I think we’re a long way off from any sort of Us and Them relationship.  They aren’t willing to work with Us.  And we’re not going to jeopardize our kids or their health for Them.  We did that once already.  It’s something I know many parents will never allow to happen again.

Us vs. Them. 

…who'll deny it's what the fighting's all about?
Out of the way
It's a busy day
I've got things on my mind…

Those lyrics. 

That song. 

When I heard it recently, I was once again mesmerized. 

As I listened to one of my now favorite songs on the radio, I was whisked somewhere else and to some time else, where things were not so hard, where I never had to worry about expressing my convictions, when I never had to defend myself as much as I do today.  I miss those days and pray they will return sometime soon.   

https://www.youtube.com/watch?v=nDbeqj-1XOo

Cathy Jameson is a Contributing Editor for Age of Autism. 

By Cathy Jameson           

Last week I shared that Ronan was getting a little bit sillier.  It’s been a treat to see him interact more with his siblings and to joke with them.  This week, the kids took the initiative with their brother.  Instead of encouraging Ronan to pretend to fall over like he was doing last week, they asked him to really fall but this time into their arms. 

Facing away from your partner, that type of fall is sometimes called a Trust Fall because you have to trust that the person behind you will catch you.  The siblings practiced that carefully together to show Ronan that they’ll always be there when he falls, but Ronan hasn’t caught on how to relax, drop into their arms, and rise up again without assistance yet.  With how much they’re practicing, he’ll get there.  I’m sure of it.  Until he does, I’ll continue to enjoy the carrying on and laughing that fills our house while the siblings help Ronan with all of the motor plan this activity entails.

Half-way through the second day’s attempts, I yelled out Nestea plunge! as one of Ronan’s little sisters stood in front of me and leaned back confidently into my arms.  Ronan laughed.  Do it again! she and his other sister asked.  They knew the game would make Ronan squeal again, and they wanted Ronan to try playing it with them again, too.  The more he sees them tackle a problem, they thought, the more confident he could become. 

I know a little bit about that myself. 

The more I learned to trust myself years ago, the better I became at advocating for my children.  Back when I took everything at face value, instead of trusting my instinct which was nagging me to no end, I put my faith in a human who did not have my best interest.  I thought she did.  I honestly thought my son’s doctor’s goal was to keep my child healthy.  His health was more compromised, though, the more I depended on that doctor.  After I decided to stop listening to and trusting her, drastic changes had to be made.  That's because drastic changes in my son's development had occurred the more vaccines she said he needed.  

When I finally clued in to what was causing him problems, I no longer found myself in a Trust Fall relationship.  It was more like a Trust Fail situation.  I learned a lot about myself during that time and from other unfortunate experiences that followed.  I also learned a lot about people, including whom to trust as well as whom I could not.  I was fortunately able to pick myself up during that time and could also create better environment where my son would have the chance to thrive, not flounder.

I’m meeting more moms now who have been able to avoid circumstances that I was unable to as a younger mom.  They've looked up loads more information than I ever thought to.  They've vocalized more and much earlier to their providers than ever I knew to.  I’m hearing that more couples are working together to preserve their parental rights, something that moms my generation seemed to take on solo.  When I hear from these couples, I’m learning that it isn’t the vaccine and the questionable ingredients that they’re worried about.  It’s the stripping of their rights that has them dismayed and speaking up.

By Cathy Jameson

A few years ago, I overheard something that didn’t sit well with me.  A woman’s son needed some help. The boy, who was wheelchair bound, was positioned closest to his typically developing brother.  Instead of asking her typical son to help his physically disabled brother, the lady got up, walked across the room and fixed what needed to be fixed.  I didn’t know her that well, but I was puzzled at what just happened and asked, “Why didn’t you let his brother help? He was right there and could’ve picked up the book that dropped.”  She said, “Oh, I could never ask him to help. I don’t want him ever to feel like his brother is a burden.”

A burden??   

It’s his brother!  

Sure brothers can be annoying at times, but they can be so much more than that, too.  They can be a friend, a confidant, a teacher, a partner in playtime, and also a role model.  It’s not always the typical brother who’s leading the way either; sometimes it’s the kid with a disability who is positively shaping the life of another.  I imagined that the boy in the wheelchair could offer plenty of teachable moments and learning opportunities to those around him, including to his typical brother.  I also imagined that much of that would’ve been natural learning opportunities as well. The boy in the wheelchair had severe mobility issues and for several years already.  The typical brother only knew him to be disabled. They weren’t living apart. They lived in the same household. Surely, the typical boy could provide some assistance some of the time.  Surely, the disabled brother, who also had speech issues, could’ve used his brother’s help on more than one occasion, too. I didn’t want to judge a fellow parent, let alone a special needs parent, but I just couldn’t understand why she wouldn’t let one son help the other.  Limiting a sibling’s interactions, natural or otherwise, could be detrimental.

I looked over at my daughter who’d accompanied me.  Smiling a sheepish smile at her, I thought, Dear Lord, I hope she didn’t hear that.  Each of my kids do so much for their brother, and they are years younger than these two boys were.  I’d be heartbroken if any of them thought Ronan was a burden.

Over the years because of that sibling encounter that I’d witnessed and because of what that mom said, I’ve been more mindful of how I ask my kids to help their brother.  

Hey, I think Ronan needs help with the putting the Wii disc in.  Can you see if he does?

Kids!  I need a charger for Ronan.  Who has one that he can borrow?  

Guys, Ronan’s sleeping off some seizures – let’s go watch a movie in the other room while he rests.  I’ll set up some snacks for you.

I don’t always preface a request or a demand courteously all the time.  Sometimes, I just tell my children that they need to do something quickly, and I won’t sugarcoat my words when I tell them.  That’s happened when we’ve tried to attend an event that Ronan’s not able to tolerate any longer or if their behavior has become undesirable.  

Kids, we need to go.  Now! Ronan’s not having it, and I’ve got to get him out of here.  

Hey, I’m going to sit in the car with Ronan for the rest of the game.  Tell one of the moms to text me when you’re done.

Guys!  Quit arguing!  The noise is making Ronan anxious.  

I don’t always apologize to them when I’ve had to speak curtly.  I will if we’ve had to abandon their plans because Ronan’s gotten too worked up.  But if it’s typical sibling stuff – like arguing over which DVD to watch, then I don’t apologize.  Typical sibling stuff happens. Typical stuff happens when a non-typical sibling is part of the mix, too.  Ronan’s picking up on that, and it’s rather exciting to see.

Last week, Ronan joked with his sister.  It wasn’t a knock-knock joke or anything that had a punch line, but Ronan walked half-way up a set of stairs and stopped.  He looked at me, and he looked at his little sister. While looking at us is not unusual, the twinkle he had in his eye was.  What was he up to? I asked Ronan what he was doing while encouraging him to continue to go up the stairs. He’s got motor-planning issues, and the last thing I needed was for him to tumble and hurt himself.  His youngest sister fully understood that also. Seeing him freeze in the stairwell, and remembering that he’d had seizures while going up a set of stairs last month, she maneuvered herself behind him and asked him if he could keep going.  

He could.

But Ronan stood his ground.  

Until he lifted one foot off the step.  

And turned toward me.  

And smiled a sneaky sort of smile.  

Holding onto the railing, Ronan pretended go let go of the railing.  Then he leaned backwards. Then he laughed. Is he pretending to fall down the stairs?  Oh, my goodness, he is!

By Cathy Jameson

June 14^th, Flag Day

Dear Diary,

Wherever we lived when I was a child, we had a flag.  At one house, where we had a flagpole in our front yard, one of us kids had the job of raising the flag each morning.  Some days it was a chore for me because I didn’t give myself enough time to raise it as slowly or respectfully as I should’ve.  But as a military brat, it truly was an honor to fly the flag.  Years later, when I was off on my own, I learned about Flag Day, a day when Americans can take a moment to honor Old Glory and what it stands for.  A proud American, I’ve always looked forward to June 14^th.

I always remember one of my students on this day, too.  It’s her birthday today. 

Now in her late-twenties, I think back to that class she was in, which was one of my first (and favorite!) classes, and wonder where she and some of her classmates are.  Through the grapevine, I’ve heard that she may be married.  What a treat to know that “my kids” have matured and blossomed into adulthood!  I’ve kept in touch with a handful of other kids that I’ve taught and am always so touched that they keep in contact with me.  Several of them are parents now, and surely, other of my former students will follow in that role in the years to come.  Like that flag of ours, I’ve always been proud of the kids I’ve been blessed to watch grow up. 

I’ve begun to worry about them, though, Diary. 

The older I get, and the more freedoms I see being taken away, I can’t imagine what sort of world their kids are going to grow up in.  Already across several states, young parents will not be allowed to parent as I have.  One single woman who I’d taught many years ago reached out to me when she’d read that the CDC’s MMR vaccine study was not accurate and was published with manipulated information.  Not yet a parent, I could understand why she was distraught.  She’s a young black woman.  Always so upbeat and kind, I didn’t want to scare her, but I had to make sure she knew the truth.  I confirmed that what she’d read, that the CDC lied to the public and misrepresented their autism findings in young black boys, was the truth.  Would this information change anything for her and for her or her future children? 

I’m sure it would. 

By Cathy Jameson          

They’re desperate.  They have to be.  Why else would we see even more American representatives working so hard to protect liability-free products?  In light of how many state legislators were successful in stripping parents’ rights during the 2019 legislative season, Products Over People! should be the new political motto. 

The latest attempt to safeguard pharmaceutical products comes from the federal level to the people with a cunning title: 

V.A.C.C.I.N.E.  The Vaccine Awareness Campaign to Champion Immunization Nationally and Enhance Safety (VACCINES) Act: The Vaccine Awareness Campaign to Champion Immunization Nationally and Enhance Safety (VACCINES) Act will give the Center for Disease Control and Protection (CDC) resources it needs to understand what drives vaccines hesitancy and barriers to immunization. They will also be able to better track where there are changes in vaccine confidence or refusal rates. With this information, they will be able to predict where an outbreak might occur because of low immunization rates and target vaccine education campaigns to those areas before an outbreak occurs.


When I first saw that, I couldn’t help but laugh.  The title.  The smiling lab-coated doctor.  The reference to the “settled science”.  The V.A.C.C.I.N.E. Act read just like a pharmaceutical ad!  I had to look twice to make sure it wasn’t a satirical piece like from The Onion.  It was absurdly laughable.  Rereading it, I realized that it was not fake. 

Schrier’s bill, which was filed in May as H.R. 2862, comes with all sorts of pharmaceutically-driven statements, which can also be found on the CDC and FDA websites including that vaccines are safe, effective and save lives.  The introduction of it, besides what one would read on pharmaceutical-funded documents, also comes with a complaint from one of the representatives in support of it:

As a medical professional for over 30 years, I find it absolutely ridiculous that we are seeing illnesses that should not be a public health concern now making a comeback.  I sense a great deal of frustration from this doctor, but as a mother of a vaccine-injured child, I find it absolutely ridiculous that a growing number in the medical community, and now in the political arena, are so quick to dismiss informed parents.  Informed parents look beyond Science.  They have to because it failed their child.  Doctors, and now doctors-turned-politicians, don’t want to listen to the parents.  They’ve turn their attention away from those parents and their valid concerns about the safety and efficacy of liability-free vaccines.  Simple questions, like asking why vaccines are being mandated when they contribute to outbreaks of the illness that the vaccine was supposed to prevent, aren’t allowed to be asked.  Doctors could choose to educate their paying customers, but they kick parents from their practices instead of address parents’ concerns professionally.

By Cathy Jameson

Just when I think we can breathe a little sigh of relief, attacks against our community make headlines again.  I expect it more nowadays, but it’s pitiful how much corporate media despises parents in our community.  Who are we?  We’re those who thought to question liability-free vaccines.  We’re also people who stand up against forced liability-free vaccines. 

Image source: Screenshots of headlines

Part of me is in disbelief that our efforts have achieved national spotlight.  But the other part of me thinks, well, it’s about time!  With all of the media’s energy and effort on drumming up vaccine sales and supporting vaccine policy, it’s hard to escape the topic.  Once a private matter, all sorts of platforms have taken on the subject.  Vaccine consumers would normally benefit from having platforms to talk about how their government supports pharmaceutical products that can fail.  But not anymore.  When former pro-vaccine parents in our community speak up, it’s become bad for business.  Unless you’re all for vaccines, even the ones that cause the illness officials claim they will prevent,  it’s not wise to speak up.  Social media giants  are making sure to shut us down, too.  

That’s too bad because it was another parent who took time to take me aside to talk to me about vaccines and the adverse events that can follow vaccination, not any of the medical professionals my son was seeing.  Those professionals wanted me to keep on vaccinating, even though the illnesses and medical problems he was having presented post-vaccination.  When I tried to point that out, I got a sympathetic look and one of these pat responses:  Vaccines are best.  They’re for his health.  We believe they’re for the greater good.  And hey, he needs them to get into school, too.  I got nowhere with medical people.  Other parents, who were never judgmental and who were always willing to share their time even though they, too, had a child with special needs, were quick and happy to help me.   It’s through their knowledge and guidance that made me realize I how little I knew about vaccines, including that they could cause serious issues.   

Sadly, some parents are still very late to the party and are only now being made aware of table injuries,  of Vaccine Court, and of the National Vaccine Injury Compensation Program (NVICP).  But ironically, thanks to the media perseverating on vaccines, those aspects of vaccines are finally part of the conversation.  Parents who’ve reached out to me privately recently are none-to-pleased that they have never been made by aware by any medical person that injuries are possible.  Never have they been informed that the NVICP exists either.  Imagine their shock when they realize that our government has paid out over $4 billion to families for vaccine injury and death.  These parents might not get the whole picture from their doctors, but with the media’s incessant vaccine postings, at least new parents are beginning to learn what several of us did not learn in time – that not every vaccine is safe, and not every vaccine provides benefits. 

By Cathy Jameson

Ronan has a few favorite things – books, songs, movies, and words.  One of his favorite movies is the original Dr. Seuss Horton Hears a Who! cartoon from 1970.  He found it on his own on Youtube and really loves certain parts of it.  He loves showing us the silly Seuss-inspired musical instruments from the story also.  Pointing carefully at his iPad so as not to rewind or fast forward the scene, he turns to us, stares intently at us to get our attention, and waits for us to say some of his favorite words of objects he sees on the screen:  drums, cymbal, trumpet.  I love the eye contact and the attention he shares with us in those moments.  I don’t always love the repetition of him playing the movie over and over again, but I love that he finds joy in parts of a story that I sometimes overlook. 

Ronan’s played another clip from that movie over and over again before.  It’s toward the end where the Whos from Whoville all chime in together and yell, WE ARE HERE!  WE ARE HERE!  WE ARE HERE!  Their lives were in jeopardy.  Something had to be done to prevent a terrible tragedy.  Working together, it took the entire population of Whos to let Horton’s jungle-mates know that they existed.  It’s a great scene with a powerful message, but from mid-January through most of February, that was the one and only part of the movie that Ronan wanted to play.  At one point when he would not stop rewinding and replaying that part, I looked at Ronan and thought, puh-leeze, kid, find something else to listen to!  But then, when I heard him play that clip multiple times the next day, I thought, Wait, am I missing something?  I know he’s here.  I’m sure he knows I’m doing everything I can to help him, too.  Since Ronan’s used parts of movies and songs in communication efforts before, I wondered, Is he trying to tell me something??  When I saw that he was just fixated and perseverating on the scene, I got tired of hearing those Whos yelling.  I asked Ronan if he could please either lower the volume or find another movie to watch.  By the end of that week, he’d moved onto watching a different film. 

I got some reprieve, but then, about 4 weeks ago, Ronan started listening to Horton attempting to save the Whos all over again.  Oh, no. I thought.  Here we go again.  But the times Ronan would replay that specific scene were uncanny.  I’d hear it after I’d tell the family about the challenges and the threats other parents across the country were facing.  Those challenges were stemming from liability-free vaccine legislation – from the Jewish families in New York, to the freedom fighters preparing to oppose SB276 in California, to the Mainers raising their voices about LD 798, to the group of parents rallying in Connecticut to protect their parental rights, there was much chatter in our family about vaccines over the last few weeks.  Ronan has a lot of deficits because of his disability, but his hearing is not affected.  He hears everything and will react to what he hears.  Vaccine-related stories around the United States and in our home were intensifying.  So was the frequency of Ronan playing that clip about the Whos from Whoville  (that part begins around minute 18:45).  

Source: Screenshot from the video

By Cathy Jameson

A couple of years ago when we discovered that Ronan was getting better at typing, I asked him to fill in a few short sentences.  When he was finished, I couldn’t wait to show the rest of the family.  We were all so excited to see his responses! 

Mom is mom.

Dad is dad.

Ronan is wii bowling.

Izzy is nice.

Fiona is love.

For years, Ronan would only tell us what he wanted.  I got used to his one-word requests, either by sign or his typing attempts, but craved to know more.  Getting Ronan to the next level, like knowing what he was feeling, would take some time.  It’s neat to see that he can do more than just make his wants known like this one from 2011:

PLAY MOVIE YES

NEW MOVIE YES

TRAIN

I WANT MOVIE

I love that Ronan has learned that his ability to communicate is important.  One word at a time, he has been able to tell us not just his wants, but also his needs.  When it’s too cold in the room, he types cold and asks for assistance to put on a jacket.  When he’s upset with someone or something, he will now quickly type “feel sad” or “feel angry”.  With prompting, I’ve been able to help him type full sentences.  Since much of his communication still includes requests, I ask him to be polite in making them – address his helper and add please or thank you. 

Non-verbal autism severely limits Ronan.  Patience, determination, and his brave attempts at trying to talk while he’s typing continue to keep me hopeful though.  His latest vocal outputs and his growing receptive language skills are encouraging to hear and see.  Since he can comprehend much of what is going on around him, I try to find new opportunities for Ronan to join our activities and to find out more about what he’s thinking about.  While we’ll always hope and pray for verbal speech, lately, we maintain the focus on writing and typing with Ronan.  I’m glad we are.

By Cathy Jameson

One of my kids shared that they’d overheard a vaccine conversation earlier in the day.  They couldn’t figure out what sparked the discussion.  But, at one point while the other people were still talking, one of them turned to my child and said, “Hey, your mom is anti-vax, right?”  I guess according to the media’s definition, I am.  But if you really know me, or care to dig a little deeper than believe a superficial label that the media brands me, I am more than just an “anti-vaxxer”.  I wrote about that  not too long ago. 

Depending on who’s said it, being called “anti-vax” can be an insult.  The way it was said toward my son most likely wasn’t.  I know that my child’s peers didn’t mean any harm while referring to Mrs. Jameson as "anti-vaxxer".   They were just repeating what the news says about moms like me.  Most of my kids’ closest friends respect me.  Some even think that I’m really nice!  When they see me, they are respectful.  When they see me with Ronan, they are even more courteous.  They show only love toward Ronan. 

Seeing him and asking about him as many times as they have over the years has opened their eyes about autism, about the ongoing struggles he faces, and about his medical history which includes a vaccine injury.  Because of their curiosity, which I always welcome, they’ve come to know that based on our family’s personal experience, we believe differently than they do about a few things.  That includes vaccines.  Liability-free vaccines are not as safe, effective, or life-saving as they and their families may believe.  Vaccine injury is not their reality, and I’m very grateful for that.  I don’t begrudge them for not knowing as much as we know, but I will always hope that they will politely agree to disagree with me, and my kids, whenever the topic comes up. 

Not too long ago, people were allowed to believe differently than their neighbors did without any drama.  That practice doesn’t hold true today.  Nowadays, when people disagree on a topic, it’s grab the knives and pitch forks!  Go after them!  Ruin their reputation!  Drag their name through the mud!  Repeat lies about them!  That’s become especially true when people, like parents like me, speak out against liability-free vaccines.  Needing someone to blame for the rise in vaccine hesitancy, we’re attacked by industry spokespeople every time a vaccine story hits the news wire.    

It shouldn’t be that way, but that’s what I see going on.  Like a spoiled child, the media and its backers want to blame someone else for something they can’t control.  They can’t control parents who have become vaccine smart.  Instead of finding fault in the US vaccine program (which is not perfect), in the US government (for their overreach), or in the vaccines themselves (which all come with risk), the media has chosen to blame all of the “anti-vaxxers” for all of the vaccine problems.  Having the means and the platforms to build up communities, the media encourages the public to pit neighbors against neighbors, school children against school children, doctors against rightfully worried parents.  

The “anti-vax” are the ones responsible for all outbreaks – even though some outbreaks have occurred in the vaccinated. 

The “anti-vax” are the ones ruining the herd immunity concept – even though it’s just a concept and even though vaccination rates are high in several states.

Note: I'm calling Mrs. Jameson Cathy Gaga today. Her message? "Just dance! It's gonna be ok...."  That happens to be my Gianna's favorite Lady Gaga song.  Enjoy this fun post! Autism month is almost OVAH!!!!

By Cathy Jameson

I had to wait until the end of April to create my Autism Action Playlist this year.  I usually have several songs queued and on replay by now.  But I gave up listening to music for Lent this year.  I’ve given up other simple pleasures before, but this year’s sacrifice really had me aching for my tunes.  With all the ridiculous measles stories popping up in my news feed this year and throughout this month, I wanted to drown out the madness with my music.  I didn’t want to break the Lenten fast though, so I stayed true to my promise.

I knew I’d made a good choice in picking giving up music when the kids expressed how much they missed having the radio on.  Ronan’s siblings love a good song just like I do.  They love to fill our house and car rides with songs that keep us all smiling, too.  Even though I decided to turn the music off, I could think about it.  Songs from my past, songs I had just started to like, and music that normally calms my soul were not too far from my mind these last few weeks. 

With Easter season now in full swing, it’s time for me to turn the music back on.  With that, here is this year’s playlist with a brief explanation of why I chose the songs I did.  Hear something you like?  Get up!  Shake your booty, and go dance in your kitchen.  That’s what the kids and I do when the music moves us. 

--

World Destruction – I first heard this song when I was running track back in the mid-80s.  A friend from high school turned me on to it.  I liked it so much that I taped it off the radio and played it on my knock-off Walkman right before my races.  The lyrics and the beat pumped me up and round and round the track I’d go!  I’ve heard the song only once on the radio since then, so I’ll play it online every now and then.  I find the message more appropriate today than when I was a teen.  Certain issues, including parental rights, are important and are absolutely worth fighting for.  The people who should give a damn about protecting them don’t though.  Heading for destruction, it pains me how messed up the world seems to be these days.   

In My Blood – Doom and gloom aside, we have options!  Even if …sometimes I feel like giving up… I won’t give up.  I can’t.  Ever!  It’s tempting, but that’s when I reach out to a friend to help me get back on track.  Things get better when people work together.  Even if the walls are caving in, as it sometimes feels they are lately, I know that we can make a difference.

Shawn Mendes - In My Blood (Terry Kingsley Remix) from Terry Richard Kingsley on Vimeo.

By Cathy Jameson’s Kids

Last week, we heard that there was a National Siblings Day.  National Sibling day is a day to celebrate your brothers and sisters.  Some people did that by sharing their pictures on their facebook and Instagram pages.  For today’s Sunday post, we wanted to share a little bit about what it means to be a brother and a sister to Ronan. 

The autism he has and that we experience makes Ronan not be able to speak.  It makes him unable to do things that other people can do.  It also makes it harder for him to walk.  He has lots of medical issues which means things are tough for our brother. 

One thing that makes me, Ronan’s youngest sister, very sad is when he is unable to speak and he gets upset and he starts banging his knees to tell me he is really sad.  That happens when I can’t understand him.  I try to help him and he knows I’m trying.  But my favorite thing to do with him is to play with him and make him laugh.  I made him laugh two nights by saying his favorite word, which is colors.  I start spelling it one letter at a time: c-o-l-o-r…and he has to say the last letter.  He actually said S!  So I did it again.  C-o-l-o-r…and he said S again!  It made both of us laugh. 

When I think about what autism is like for Ronan, I, Ronan’s younger sister, know that it means he’s not being able to do as many activities as we can do.  It means he has trouble getting us to know what he wants because he has no speech and because of his disability.  His brain works a little slower sometimes, too.  That doesn’t stop him trying to tell us stuff.  Sign language, typing out what he wants on his voice output device, and encouraging him to say letters individually are some things I do with him to instruct him.  He’s happy when I do that kind of stuff with him. 

When he does try to speak to me it’s harder to have meaning behind it (he makes more vocal sounds than verbal words).  I’m Ronan’s younger brother and like that he’s trying, but it’s hard for other people to understand it and him.  He gets frustrated a lot.  Every night we pray for Ronan.  I ask God to help Ronan to be able to expand his vocabulary and be able to use it by speaking to us.  We know that Ronan knows a lot of things, but he’s stuck trying to get those thoughts out.  I want to know what he’s thinking.  I also want him to play with the rest of us.  He’s a really fun kid when he wants to play with me.

By Cathy Jameson

I’d rather have an autistic child than a dead one!

I see that response every few months, and I’m surprised each time I see it.  I’ve never made that statement myself, but it will sometimes take my breath away while I’m reading or replying to online conversations about autism and vaccines.  Usually written by someone who has declared themselves pro-vaccine, I always find it an odd thing to say.  I’ve found that the people who say it tend to be quick to dismiss opinions other than their own.  No matter the topic, dismissing another’s opinion limits the opportunity for a productive back-and-forth dialogue.  Differences and odd statements aside, online convos about vaccines and autism are already known to be quite lively. 

Prior to stating that they’d rather autism versus death, as I recently heard someone say, the person has also just adamantly asserted that vaccines don’t cause autism.  They can’t.  Not wanting for their child to succumb to the measles, or whatever illness the media is perpetuating, they’ve insisted on the MMR vaccine for their child.  Led to believe that their child will die from the measles, they really, really want that vaccine, especially because that one doesn’t cause autism.  I won’t argue with their right to choose to vaccinate, but I can’t help but shake my head when their comeback, even though they didn’t need one, is “I’d rather have an autistic child than a dead one!”  Wait.  What?  They just said vaccines can’t cause autism, so why on earth would they say that they’d would rather an autistic child than a dead one unless they actually do think that the MMR vaccine can cause autism?  Besides being a tad rude, their comment doesn’t make sense. 

I know that when that emotionally charged statement is made in a conversation, the person doesn’t want to hear anything else from me.  As the mom of a child with regressive non-verbal autism, whose autism is a result of a vaccine injury, I’ve exhausted them.  I want to tell that other person that I’d rather they long for a typically-developing healthy child and hope that they would never have to think about making such a tough choice of a dead kid or one with autism.  When they add that to the conversation, it’s almost like they are saying they feel like they have to pick the lesser of two evils.  No one should have to do that. 

I’ve learned that if I want to keep the convo going, though, I can’t just blurt things out like they end up doing with their “autistic over a dead child!” retort.  When I hear that said or see that left in a comment online, it’s an immediate conversation stopper.  Once it’s been uttered, I know I’ll soon quietly, but confidently, walk away from the other person.  I’ll generally have said all that I needed and wanted to say at that point.  I know that even if they wholeheartedly disagree with me, which is their right, I’ve at least had the chance to plant a seed.  They can’t believe absolutely in the science of vaccinations as they do and also acknowledge the anecdotal evidence that I’ve provided.  Hearing from me, a parent who walked away from the vaccine industry, sometimes is too much for them to handle.  For them to admit that vaccines could be anything but safe and effective would go against everything they’ve been told to accept as true.  Since we, at one time, were in agreement, I have made sure to tell that other person that I, too, believed only positive notions about vaccines.  No way could they have done what they actually did to my kid, right?  But they did.  My son was a thriving baby, met his milestones, and was very playful.  But then, an unexpected vaccine injury happened.  Lost, confused, and in denial, I had no idea what to do.

Aaaaaaaaaaaaaaaand it's 2019 2017. "Y'all ready for this?" I want to do a reverse Punxatawny Phil and crawl INTO my den for the month. Kim

###

Aaaaand it's 2019 2015.

Managing Editor's Note: We ran this post from Cathy Jameson 6 Aprils ago last April -  2013.   I wish it were out of date.  2190 365 days later and it still works...

By Cathy Jameson

Let me embrace thee, sour adversity, for wise men say it is the wisest course.
--Shakespeare

It’s that time of year.  We’ve flipped a calendar page to a new month:  the month of April.  The month when autism groups, who make money off of our kids’ diagnoses, go into full-fledge fundraising mode.  From walking around in circles promoting awareness to slapping a puzzle piece on every-day household products, this type of fundraising saddens me.  While our children’s needs are used for another’s gain, these money-making tactics suck the life out of me. 

April used to be my favorite month.  It ushers in springtime weather and the awakening of new life.  It also happens to be my birthday month.  Now, when I think about April and how blue it makes me feel, it’s the worst time of year.   Long before the month starts, I’m done with April and the autism ‘awareness’ and ‘celebration’ it brings. 

Not only has autism awareness been pushed so much that I’m blue in the face because of it, I recently saw a new campaigns are asking us to embrace it.  Embrace autism.  Really?  I’ll embrace a lot of things, but I will never embrace autism.  Before anyone jumps down my back saying I don’t love the person behind the autism label, rest assured I do love that person.  I love Ronan to the moon and back (well, farther than that really because many of you know I will do everything I can for him).  HE is who I love.  HE is my inspiration.  HE is the reason I work so hard.  But, to ask me to embrace WHAT grips him from the inside out, what limits his abilities and his potential, and what he struggles with almost every minute of every day?  Never. 

Autism, celebrate it.  Autism, advertise it.  Autism, wear it.  Autism, it’s not so bad.  Embrace it. 

I don’t think so.

By Cathy Jameson

This land is your land, this land is my land

From California to the New York island

From the Redwood Forest to the Gulf Stream waters,

This land was made for you and me…

One of the first songs I recall from my childhood, besides classic nursery rhyme songs, is Woody Guthrie’s This Land is Your Land.  I remember singing that song while living on the west coast in the mid70s around the time I started kindergarten. 

I would sing This Land is Your Land on long road trips, too.  Cris-crossing the country, as Guthrie did before he recorded that song, I loved looking out the window while we traveled down the highway.  Sitting in the back seat of my family’s Oldsmobile, I watched for trains, I looked for waterfalls, and I took in the sheer awesomeness of the Redwood Forest that Guthrie references.  Other places we’d explore, like the Grand Canyon, the Painted Desert, and the Texas hill country, were just as jaw dropping.  Proud to be an American, I couldn’t wait for the next road trip to see more of my great country.  I didn’t feel proud after watching the news this week.  More shocked and appalled than I’ve ever felt before, I couldn’t believe what was happening right here in the United States. 

From California to New York, vaccine news this week was more than just bizarre; it was downright ludicrous.  From yet another vaccine bill that will remove more rights to restricting healthy citizens’ access to public places, officials’ tactics are proof that our government is not interested in the people.  What is more disappointing is that they’re doing these upsetting things in the name of better health.   

On the west coast in California, vaccine exemptions are again under fire.  They shouldn’t be because on more than one occasion before SB277 became a law, Senator Richard Pan (CA-D) assured the public and his fellow politicians that Californians would not lose medical exemptions.  With the introduction of SB276,  he is going back on his word.  A complete overreach, Pan’s bill would not benefit the people of the state of California.  Besides stripping them of their rights, it would also undermine a physician’s professional opinion and responsibilities.  Doctors are the ones who write medical exemptions in California now, but Pan is pushing for the Department of Public Health to take over that role.  His bill would limit qualifying conditions, too, and will, in essence, give more control to the government, not to the patient or to the physician who personally oversees their medical care.

NOTE: Cathy often ends her post with music. When I read this post in preparation for publication, I immediately thought about this powerful scene from Sex in the City - where Samantha (the bad girl of the show) gets REAL during a breast cancer benefit. She speaks out, breaks the taboo of the reality of cancer. It's at the end of this post. There's a  moment of salty language. This is how I envision Cathy, and so many other women, including myself, for DARING to confront the myths and bullying that surround vaccine choice. STRIP OFF YOUR WIG and TELL THE TRUTH.  The anti-vaxxer?  SHE'S ME. SHE'S YOU. XOX Kim

Cathy Jameson

A friend sent me a message a few nights ago asking me to check out an online conversation that was on one of her social media pages.  I told her sure, I’d check it out.  I was just about to serve dinner, though, so I quickly opened the conversation knowing I’d have to come back to it when I had more time.  Scrolling to a woman’s comment that my friend wanted me to look at, I leaned back in my chair.  Ahh, an online conversation about vaccines.  Do I really want to jump in?  I’ve shied away from joining in on friends’ social media posts beyond sharing a “like” or “favoriting” something they’ve posted.  I’m in full support of their efforts when links about liability-vaccines, autism, parental rights, and protecting existing freedoms begin thoughtful conversations, but I don’t know their friends or their friends’ beliefs.  I’ve walked into too many hateful one-sided online conversations with complete strangers.  Whatever I try to share with them – even if it’s a link straight from the CDC saying that all vaccines come with risk,  is somehow turned against me.  At quick glance, I could see that the conversation my friend invited me to join could be heading in that same direction. 

Subjected to more hate than reason, I haven’t wanted to chime in on conversations on other people’s pages as much as I used to.  But this friend reached out to me specifically, and I fully trusted her to help back me up should things turn ugly.  So, after I read the other person’s comment, especially when they asked Why someone would walk completely away from vaccines?  Why when we know they work! I decided to say something.  I couldn’t answer her right away.  Dinner was ready.  But I told myself that if the tone of the thread didn’t change before I came back to the computer, I would leave a ‘one and done’ reply.  I’d get what I needed to say in one sitting.    

I wish I’d thought to save the original post and the questions that person was asking, but I didn’t think to.  Besides wondering what turns someone into an “anti-vaxxer”, my friend’s friend wondered if some sort of testing could be done since she’d [paraphrased] heard the media say something about autism and vaccines and something about underlying conditions.  Prior to that, she’d mentioned that a medical test ordered for her son revealed a condition she didn’t know he had.  When I read that I thought, If only parents of vaccine injured children had that option—some sort of test prior to vaccinations that would show if the child was susceptible to vaccine injury—if we’d been offered that, maybe some of us wouldn’t be raising medically fragile children like we are.  I was happy that she’d found appropriate treatment after that testing, but then my emotions changed.  Going back to how important vaccines are, the woman stated that she’d risk for her son the minute vaccine side effects because she’d rather an autistic child than a dead child. 

I do so wish I had her exact words to share because the first question she asked is a common question, Why would a parent choose not to vaccinate?  The media likes to label people who choose not to vaccinate as “anti-vaxxers” completely forgetting, or purposefully ignoring, that many of us made the decision to not vaccinate based on what a vaccine did to our children.  We did vaccinate.  We did follow the schedule.  And we did so without hesitation.  Now a derogatory reference, using the term “anti-vaccine” is meant to divide.  Being labeled “anti-vax” also means you are stupid, irresponsible, and the cause of current outbreaks, and potential future ones, according to pro-vaccine groups and politicians and the media.  The woman from that online conversation needed more information because most of the people I know who the media, and now the public, label as “anti-vax” are far from stupid. 

Understanding the vaccination process, knowing the legal ins and outs of the US vaccine program and vaccine law, and realizing why it’s important to know more than what the media and doctors say is true, “anti-vaxxers” are more qualified to speak on the subject of vaccines than those being paid by the industry are.  Moreover, none of the “anti-vax” people I know have superpowers to willy nilly infect anyone with diseases or illnesses.  They, as well as the unvaccinated, cannot spread diseases they do not have.  That’s just not possible.  So many misconceptions surround that term and the people labeled as such, which prompted my friends’ friend’s next question, What turns someone “anti-vax”?  While I don’t have her part of the conversation, something told me to save mine.  So, I did:

I can't speak for all "anti-vaxxers" who choose not to vaccinate, but I can share a bit of our story.  I was once pro-vaccine. 100% for them.  It wasn't until after my child suffered an adverse event that I changed my outlook on them.  What I was told couldn't happen to my son happened: he was injured by a vaccine. After that discovery, I started to finally read about vaccines instead of taking what our providers were saying as gospel truth.  Believe me, I did not want to walk away from them or from what I'd been told my whole life, that vaccines were only safe and only effective.  But the more I read, the more I learned.  I learned that all vaccines come with risk, that they were not studied as the CDC says they've been, and that for some people like my son, they can do more harm than good.  Side effects and adverse events were our reality - not better health or protection from diseases (yes, we've tested this and know that the vaccines did not work).  Our doctors could see my son decline post-vaccination and could read what the tests said, but refused to help and only pushed for us to get more shots.  I said no more.  My son could obviously not handle them, and I was not about to continue to follow the vaccine schedule that they and govt presented.  Our docs couldn't give me a guarantee that vaccines would work just as federal agencies that oversee and promote vaccines can't.  Today, my son still deals with the negative result of the vaccines he received, and not minute issues either.  Seizures, loss of speech, GI problems, gross motor delays, fine motor delays, ataxia, and other medical issues he didn't have prior to vaccination are an everyday part of life.  I'll add one more thing since you mentioned it - it isn't just about autism that concerns some parents.  It's side effects like intractable seizures, loss of acquired skills, infertility, anaphylaxis...and these days, it's also the trampling of parental rights like having the choice to say no thank you to a liability-free pharmaceutical product that comes with risk that are waking people up about vaccines.  And if you really would rather an autistic child over a dead one, you have so much more to learn.  Being "anti-vax" was not a choice I ever intended to make.  I was forced into that role.  Now that I know what I do though, I only wish I'd made that decision a little bit earlier.  I wish you the best.

I waited for her reply.  None came that evening.  No response was there the next morning either.   

Did I plant a seed that “anti-vaxxers” are real people and not some bogey man monster type that the evening news says we are?  Did I jolt her into thinking beyond what the media is telling her to believe?  Did I stir things up just enough for her to stop and think how callous and rude she was to say that she’d rather an autistic child than a dead child?  I’ll never know.  That’s because after I left my reply, part of conversation on my friend’s page was gone.  So was my response.  Later the next day, my friend reached out to me thanking me for sharing what I did and confirmed that our little convo was gone.  She didn’t take it off her page.  I didn’t take it down.  It had to have been the other woman who deleted it. 

Initially, I had planned on writing a much shorter message to this person, but when I reread what she’d written, I got upset and my reply grew longer.  Rather a child with autism than a dead one??  How dare she say something so crude!  While my “anti-vax” friends don’t have superpowers, some have lost their child post-vaccination.  Proven to be a result of vaccines, that child mattered.  How that child died matters, too.  Those parents who’ve lost their children are sometimes also called “anti-vax” for suggesting to new parents to ask more questions than they thought to when their child was alive.  They are parents whose child died after participating in the vaccine program.  How is wanting to help someone avoid what they could not be seen as anti-vaccine or anti-science?  It isn’t.  These parents deserve more respect than they are given, and my heart aches thinking about the incredible loss they will forever feel. 

So, who exactly are the “anti-vaxxers”?  We’re people who believed in vaccines.  We’re Americans who trusted the government thinking they had our best interest in mind.  We’re parents who did exactly what our doctors told us to do.  We’re mothers who watched their child get sick and then sicker.  We’re fathers who regret not knowing enough, reading enough, or asking enough before it was too late.  We’re the ones who took one for the herd.  We’re the ones whose children have suffered irreversible side effects and whose children have died post-vaccination.  We’re the ones who know that pharmaceutical companies have better legal protection than vaccine consumers do.  We’re the ones who now know too much to be silent.  Call us what you want, but calling us “anti-vax” won’t stop us.  It hasn’t yet.  I can think of a few other words that better describe us – driven, educated, vocal, but if you want to use that term “anti-vaxxer” know that it’s much more than the canned description the media overuses when describing parents who think to question vaccines and who stop vaccinating altogether.  

I hope before my message was deleted that I offered a satisfactory response to what that woman asked in that online conversation last week.  It was clear that she was pro-vaccine, which is her right, but she believed the misinformation the media and mainstream medicine have said about informed parents like me.  While I could’ve shared more details about my son’s injury and more about why I walked away from the US vaccine program, I kept my message to her simple:  Being “anti-vax” is a way of life that includes protecting my child, preserving my freedom to choose, and supporting her right to choose as well. 

Cathy Jameson is a Contributing Editor for Age of Autism.   

By Cathy Jameson

I was reminded of a post I saw on Age of Autism a few weeks ago.  Written by a concerned citizen back in 2015, I don’t think enough politicians read the Resolution which was addressed to the California Democratic Party.  After reading it again last week, it could have been addressed to all lawmakers.  I don’t believe the politicians backing the bill being referenced in that document listened to the valid issues that thousands of other Californians had also expressed.  Dismissing their own constituents’ input, as well as scientific fact, SB277 passed with flying colors. 

Another Resolution caught my eye on March 6^th.  Introduced by Rep. Adam Schiff (D-CA) in the House of Representatives one day after the Senate Committee on Health, Education, Labor and Pensions (HELP) met, it reiterates the committees’ clearly obvious “Vaccines Save Lives” agenda.  

Hundreds of mothers from across the country, many with a differing viewpoint than that of the HELP committee, traveled to Congress to have their say that day.  But they were shut out of the room.  Their first-hand experience and extensive knowledge of US liability-free vaccines, which I share, should have been part of the conversation.  Instead of letting their voices be heard, the committee focused only on a small panel of men who presented a one-sided viewpoint of the US vaccine program.  Speaking very highly of our country’s liability-free vaccines—and of all that they have done to promote these vaccines—there was no room for anyone to present a balanced view. 

Fathers were kept out of the chamber, too, as the hand-picked doctors, scientists, researchers, and an inexperienced high schooler had ample time to say what they wanted, or were scripted, to say.  As long as I’ve been part of the parent-led movement, whose aim has been to tell our personal accounts and draw attention to the adverse side of vaccines, I can’t say that I was surprised that Rep. Schiff’s document was so quickly introduced.  It’s the main attraction of the Congressional circus side show that both the Senate and the House have just put on for the American people.  

Source: Congress (continue reading the entire Resolution by following this link.)

Besides contradicting what so many families have experienced, the Resolution contradicts what the US government and what several federal agencies have published about vaccines, namely that all vaccines come with risk.

I’m used to how parents are not heard, as happened in California with the passing of SB277, but it’s more than concerning how we’re being silenced today.  For decades, parents have been telling a compelling story.

When it comes to vaccines, we are all uninsured Americans.

By Cathy Jameson

A few weeks ago, our car was involved in a hit and run.  We were not in the vehicle at the time, so we did not sustain any physical injuries.  Regardless, damage was done.  Something, or someone, hit our car and took off.  No note was left.  No explanation, no apology, no chance to make amends.  Despite us not witnessing it or being physically there, auto insurance covered the hit and run claim.  They did so with no questions asked.  I took photos as soon as we discovered our car had been hit to help prove everything, but they believed us before I offered to send them.  Once the claim was filed, the insurance company promised to cover the repairs, compensate the fee of the rental car we’d need while our vehicle was in the shop, and they’d promise to make sure to keep in touch with us during the lengthy repair process.  The body shop that conducted the repairs even offered us a lifetime warranty on their work.  For the time we own the vehicle, all paint and body repairs are guaranteed.  I wish I could say we had the same customer service and product warranty for the liability-free vaccines my son received when he was younger. 

Instead of top notch customer service, we got confused looks from medical staff when we mentioned that we thought the vaccines hurt him.  Later, when I had to bring Ronan back to the doctor because he was getting sicker, we presented a timeline of the vaccinations received and when new issues started.  Referencing dates that were documented in his medical record – and all of the problems that began post-vaccination, we again encountered silence.  They’d known Ronan since birth.  They’d seen him grow and develop typically to a point in time.  But instead of jumping to assist us or to affirm that our hunch, that something happened to our once typically developing child, we were left on our own.  That’s in thanks of the National Childhood Injury Act of 1986.

Pharmaceutical companies and those who administer their products, aren’t held legally responsible for vaccine products or what happens after vaccines have been administered.    

While we demanded and got the necessary medical attention my son’s medical issues required after liability-free vaccinations failed him, we never got any sort of counseling about what to do next.  Why would we?  Those we previously trusted denied any wrongdoing.  The companies that provided the shots also didn’t have to do anything.  Since that Act, which I knew nothing about until after well after we discovered the injury, the pharmaceutical industry has not had to “back their claims”.  They do not have to insure that their products come with any sort of warranty either.  The Act “Provides that no vaccine manufacturer shall be liable in a civil action for damages arising from a vaccine-related injury or death…” It’s a hard fact to swallow, but it’s true.   

Vaccine manufactures have no liability for their vaccine products. 

Today in Washington, DC.
Full Committee Hearing Vaccines Save Lives: What Is Driving Preventable Disease Outbreaks



Thank you to the activists and advocates and parents who’ve made the trip to DC for today's hearing including pur own Mark Blaxill and Jennifer Larson.   Our nation is riddled with strife, problems, real issues affecting families every day. Measles is not one of them. We've had more deaths by active shooters than measles. We've had more deaths by opiod addiction than measles.  Measles in America is not deadly. Measles in America is not measles in Madagascar. The hearing has a not so hidden agenda to push vaccine mandates into the Federal realm. In due time, Americans may have to prove vaccination status when filing income taxes or face penalties.  It's a frightening time for our individual rights.

By Cathy Jameson

I wanted to be at the Energy & Commerce Oversight and Investigations Subcommittee hearing last Thursday morning.  After working every possible scenario to leave home to be there, I just wasn’t able to go.  So instead, I watched the hearing on a C-Span link in my home office.  I know it could’ve have helped to sit with fellow parents who were there, some of whom have a child with a vaccine-injury like my son has.  With how attacked moms like me are, seeing the women in the audience was a comfort. 

Sadly, and predictably, the hearing these other moms traveled miles to attend turned out be the one-sided conversation I’d been warned it would be.  The testimonies of the expert witnesses sounded more like a scripted pharmaceutical ad than an honest conversation about vaccines.  Ads tend to highlight potential benefits and can gloss over actual facts.  They are a one-sided transmission of what an industry wants the public to hear.  That’s exactly what the hearing sounded like until those moms in the audience broke that transmission. That happened when one of the representatives asked a witness, a medical doctor, a simple vaccine question.

“I’ve heard some parents claim that measles vaccines can cause brain inflammation, known as encephalitis.  Is that true?”   Rep. Brett Guthrie (R-KY) asked Dr. Anthony Fauci.  “Is that true?” Guthrie continued.  “Can measles vaccine cause encephalitis?”

Shaking his head, Dr. Fauci replied, “Brain inflammation...encephalitis…  The vaccine?  No.”

Yes, it does.

ADVERSE REACTIONS (as found on p. 7 of the MMR vaccine package insert)

Source: FDA

Ironically, side effects and vaccine reactions are also published on the CDC website – which both doctors giving testimony referenced and encouraged parents to go.  Fauci gushed about it only moments before he lied, “The CDC website is just really a cornucopia of important information.  It’s easily accessible.  Go to CDC.org.  Search.  Put measles in.  All the thing you really want to know about it are right there, with references.”

Guthrie must have known Fauci wasn’t telling the truth because he questioned Fauci further, “There’s no cases?”

Note:  Pinterest seems to be under some serious acupressure......

By Cathy Jameson

What’s next?

Will they come after personal webpages?

Will they ban the books that have already been written?

Will they remove our ability to call each other from our home phones, disable our cell phones so we can text each other, or remove emails access from our personal computers?

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Pinterest was never one of my favorite websites to visit. But with readers all over the world using all manner of social media platforms including Pinterest, I created an account for Age of Autism there several years ago. Once in a while, when I’d remember to, I’d pin something under our Great Reads, Good Movies, or Friends of AofA boards. A new book to check out, a documentary of interest, or an infographic that was making the rounds on other people’s advocacy pages were what I’d typically pin. Never more than an afterthought though, I’d spend more time adding links and reading material to our AofA Facebook fan page. With a much larger audience, FB was the place to be.

Late last year, I heard that Pinterest was shutting down individual and advocacy groups’ accounts for pinning misinformation about the US’ liability-free vaccines. I knew that it was just a matter of time that AofA would make that same hit list. In mid-December, I received an email from Pinterest that information I’d pinned on our boards long ago were in violation of one of their policies.

When that happened, I wasn’t surprised. I wasn’t sad about it either. Visually unappealing to me, I never cared much for Pinterest’s layout and preferred to spend my time on other social media platforms. I’d honestly forgotten about people’s pages being pulled off of Pinterest’s until a dear friend mentioned it to me on Thursday evening. Friday morning, articles were being circulating about those recent unpinnings.  I tried to log on to see if we were still being banned from using Pinterest.

By Cathy Jameson

After our much-needed family getaway last week, it was time to get back to reality this week.  For the kids, that meant catching up on homework and school projects.  For me, it meant reading up on whatever news I missed while we were out of town.  I knew that the measles had started to make headlines both here and abroad a while ago.  I also knew that some states were attempting to remove parents’ rights again, but I was not prepared for just how much news was being made about measles and vaccines in just the few days we were away.  You’d think that the US was under multiple “vaccine-preventable disease” threats!  According to the CDC, we’re not. 

Source:  CDC

Source:  CDC

So what’s all the recent fuss about then?  It’s still the mainstream news outlets’ favorite of all seasons – flu shot season, but I’ve seen more stories than ever before about the measles.  Some have said that it’s because it’s legislative season. With almost all 50 states in their legislative sessions right now, that makes sense.  “Legislative measles” has made for some good news for the media lately!  So have other “legislative diseases”.

By Cathy Jameson

I missed a lot of news this week. Too busy taking care of things at home while prepping for a much-needed family trip away, I stopped reading about the measles, about states ready to remove religious exemptions, and about other stories the media wanted me to worry about. As important as some of the news topics are, I had other important things on my mind.

Taking a child with seizures and regressive autism on vacation is doable, we've done it countless times before. But every trip, even if we've been to the location before, takes careful planning. I haven't ranked the importance of each, but I must always consider Ronan's health and safety for each adventure we hope to take. Those, and which of Ronan's daily, necessary supplies we'd need to bring while we're far from home must be packed well before I think about simpler things, like what outfits I'd like to bring for me.

Health-wise, we've had a mild winter so far. I reported that to one of the nurses assigned to us days before we left. Curious if we still say no thank you to the flu vaccine because of a reaction Ronan had previously, she asked if Ronan had gotten sick with the flu since last "flu season". I shared, "Nope, he hasn't." "Even without the shot?" she was curious. "Yep, even without opting for the shot," I stated. Ronan's siblings had the sniffles when winter started, but he's been healthy for a good stretch of time. We wanted to take advantage of the optimal health Ronan's been experiencing, so we made plans to leave town sooner than later. The siblings were looking forward to that because it would mean missing a few days of school. I normally wouldn't pull the kids out of the classroom in the middle of the week, but when every door opens for us to go away as a family, we go.

Able to pack their own bags, the kids got their flip flops, swimsuits, comfy clothes, and a few of their books packed right away. Fueled by their excitement, they packed quicker than I could. Requiring loads more time and attention, Ronan can't just walk out of the house with a backpack like his siblings can. He needs multiple changes of clothing, pull ups and diapers including swim diapers, waterproof sheets to put over whatever bed he'd be sleeping in, his favorite books and pictures, a communication device, the iPad, his food, and the blender so that I can puree his food. He wouldn't be too excited that the blender was going to travel with us, but dsyphagia, like autism, doesn't take a vacation. Getting everything ready wouldn't be hard; we have everything he needs at home. It was a matter of making sure I had enough diapers, pull ups...and everything else when we got to our destination. We could certainly buy things where we were going, but I didn't want to have to spend more money than we already budgeted for the fun activities we couldn't wait to do. We were planning on going to a water park, the beach, a museum, and a few other places that required admission. Packing and bringing whatever we could from home, it looks like we're on the run with how full the back of the car is with all of Ronan's things! Medically fragile kids require a lot of equipment. There’s no getting around that. How well our vacation plans go will sometimes depend on how comfortable Ronan is. If he wants all of his comforts of home, we bring them. Once we got to our first destination, I was happy to discover that I only left behind one thing - his toothbrush. I remembered everything else, which is a lot, and was happy to spend a few cents more than I usually would for a new toothbrush.

With how many miles we've logged up and down the east coast since Ronan was a baby, I was not worried about how he would do in the car when it was time for us to hit the road. He does so well! He used to need to be "plugged in" either with a movie or a game on the iPad, but Ronan can now go miles down the road without wanting to play on any devices. The longest trip where he's been content to read or look out the window at the passing scenery has been two hundred miles. That’s a feat for any kid, let alone a child with autism. Many years ago, Ronan couldn't get beyond our driveway without a requesting a movie, and usually one he wanted us to play over and over again.

This trip would be shorter than the one we took at Christmas, but was just as important. We'd be spending time with family. Having gone through some trying times the last few months ago, we were going to be able to put life on pause for a few days. That meant no alarm clocks, no therapy appointments to run to, no phone calls to case managers, and no nagging emails to return. It would be just us doing whatever we wanted for a few days. We'd be in close quarter, but it was the time we'd get to spend together that I was most looking forward to.