Autism and Wandering: Constant Vigilance

By Cathy Jameson

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

Locks. 

Alarms. 

Vigilance. 

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

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

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

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

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

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

Vaccination & Segregation

By Cathy Jameson

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

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

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

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

They continued: 

The Unvaccinated should be corralled into their own society. 

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

And maybe the sheriff, too. 

Syllabus for Your Life With Autism

By Cathy Jameson

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

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

Course:  Life With Autism

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

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

Scheduled Class Time:  24/7

Just Breathe

By Cathy Jameson

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

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

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

Writing the Wrongs

By Cathy Jameson

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

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

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

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

Sometimes my input is greeted with thanks. 

Other times, it’s with angst. 

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

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

Know the risks.

Know the facts. 

Know their rights.

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

For the Next Generation

By Cathy Jameson

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

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

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

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

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

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

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

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

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

Wouldn’t It Be Nice

By Cathy Jameson

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

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

He’s talking about vaccines

And publicly, too! 

I was optimistic, so I continued to read.  

Then, my bubble burst. 

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

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

I didn’t have the heart to chime in. 

But other mamas did.  

Those mamas were not backing down!

Fight for Your Right to Vaccine Safety Education and Choice

By Cathy Jameson

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

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

Why did we go to the big city this week?

We went to fight for our rights.

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

It was important because we have experience with vaccine injury.

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

It’s taking away a freedom.

Right! 

--

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

--

How important is our religion to us?

It’s the most important thing in the world. 

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

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

Why were they wearing red?

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

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

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

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

Good point!  I can tell you were listening.

--

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

Breaking Point

This is a Best Of post from Cathy who has the weekend off.

By Cathy Jameson

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

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

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

This is a Best Of post from Cathy who has the weekend off.

By Cathy Jameson

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

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

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

Questions and Answers

By Cathy Jameson

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

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

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

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

The kids mulled over my request. 

They were not amused. 

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

Until I read some of their questions. 

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

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

Waiting Room Observations

By Cathy Jameson

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

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

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

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

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

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

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

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

Pharma Adverts on TV: What Will You Say?

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

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

By Cathy Jameson

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cathy Jameson is a Contributing Editor for Age of Autism.

Going Home Again

By Cathy Jameson

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

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

Really. 

And why not? 

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

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

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

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

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

A Father’s Quest - Gardasil Vaccine

By Cathy Jameson

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

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

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

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

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

I couldn’t blame him. 

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

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

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

By Cathy Jameson

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

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

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

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

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

that I saw shared on FaceBook not too long ago:

Sitting here reading those highlighted words makes my stomach turn.  

A Family Member Responds to VaXxed

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

A Family Member Speaks Up about VaxXed

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

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

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

Regrettably Yours

By  Cathy Jameson

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

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

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

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

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

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

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

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

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

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

Oddly enough, regret fueled my next move. 

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

He can make eye contact! 

He can still communicate!

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

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

VaXed: From Cover-Up to Catastrophe Playing in DC

Cathy took a slightly different course this morning.

By Cathy Jameson

VAXXED: FROM COVER-UP TO CATASTROPHE

The Film They Don't Want You To See

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

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

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

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

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

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

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

Right to Know

By Cathy Jameson

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

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

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

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

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

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

The Right to Know

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

He Calls Me Mom

By Cathy Jameson

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

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

Hey, buddy.  What do you need? 

Ronan may or may not sign his next request.

He may or may not gesture what he wants.

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

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

Do you need help?

A snack?

A drink?

A game?

A movie?

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

Em. 

Ba. 

Da. 

Um. 

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

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

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

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

The Autism Beatitudes

By Cathy Jameson

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

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

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

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


                                                         Drawn by Ronan’s little sister, Izzy.

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

Cat Jameson Guest Blogs on Holistically Whole

Photo credit: Fiona Jameson

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

One More Time:  The Story That Needs to Be Told

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

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

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

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

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

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

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

Best of: Baby of Mine

By Cathy Jameson - August 2015

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

The new life.

His perfect little body.

That newborn baby smell.

The endless opportunities he will have.

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

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

Cat’s 2016 Autism Awareness Month Playlist

By Cathy Jameson

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

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

Earbuds in.

Music turned up to a nice respectable level.

Madness turned off.

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

xo, Cat

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Maximillian and Medina – Stavos Mammonian

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

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

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

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

Try Everything – Shakira

6 More Ways to Help During Autism ACTION Month

By Cathy Jameson

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

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

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

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

My Life for His

By Cathy Jameson

As I put the car in park, I placed the handicap placard on my rearview mirror. I glanced behind me. My younger children were happily munching on snacks oblivious to the mental gymnastics I was doing as I thought about how to get us from point A to point B. I need to give them directions, so I asked them to take a break and listen.

“Guys, after we get out, we’re going to walk together. I’m not sure how the event is set up, so be ready to listen to directions and follow them, okay? It’ll take a few minutes for me to get Ronan ready, so finish your snacks and then let’s get ready to go.”

Nodding that they’d heard me, I turned my attention to Ronan. Opening his car door, I said, “Hey, buddy. I’m going to get your adaptive stroller from the back.” We haven’t needed to use it for quite some time, but with the long walk and the long wait I was anticipating, I let Ronan know that he’d be using it.

The kids gathered around while I buckled Ronan in his stroller. Ronan’s younger brother said, “Mom, when people look at Ronan, what do you think they think?”

We hadn’t drawn any unwanted attention (yet), but several other people were very close by, which is probably why Willem asked me that question. Some people were heading to their cars to leave while others were getting themselves organized to walk over to the sports’ field like we were. Not wanting to make any sort of eye contact with anyone, I had kept my head low and concentrated on making sure that Ronan was comfortable. I looked at my son and swept my gaze across the busy parking lot. Instead of taking a minute to answer him, I asked, “Well, before I answer that, what do you think that other people think when they see Ronan?”

Quickly responding, Willem said, “He’s in the stroller because his legs aren’t working or because something is wrong with him…or, or it’s because he has special needs. I know that without Ronan, I wouldn’t know what special needs meant, but because of Ronan, I know that it can mean someone has disabilities.”

“That’s a great answer!”

I continued, “If I didn’t know Ronan and I saw him for the first time in the stroller, I’d think that maybe he’s got problems with his legs. I don’t know if I’d think he had other problems unless I got to know him better. Ronan looks like a regular kid most of the time. It isn’t until someone tries to talk to him do they realize how delayed he is. That’s what I’d think.”

Ronan’s younger sister, Izzy joined the conversation, “I think they might think that Ronan should be able to walk and talk and play with other kids, but the more they look at him they see that Ronan can’t do that stuff. I think those people might think he needs extra help. But some people don’t come over to help. They just stare.”

We were just about to take the long walk over to the sports’ field when I asked Izzy, “Is it okay for people to stare?”

“No!” Ronan’s little sister emphatically answered.

I asked, “But what if it’s okay to stare?”

Finding Hope in My Health Class

By Fiona Jameson

When the second semester of my freshman year started, I felt somewhat prepared for the Health class I was about to begin, but I was concerned about topics what might be discussed. What if a chapter in our textbook included vaccines like my middle school textbook did? What if I had to defend my view of vaccines? What if I defend my views and others opposed it? I’m sure I could have a decent conversation about vaccines because of my family’s experience, but I know I’d feel a little uneasy talking about them because I don’t know my classmates very well yet.

I got my Health textbook before classes began. I went ahead and looked at the index to see if vaccines were mentioned in any of the chapters. They were. A vaccine schedule and a few sections that had quotes from the CDC were in the book too. After I saw that, I looked for the copyright date. I wanted to see when the book was published. It was published in 2001. That’s the year that I was born. The vaccine schedule back then was not as full as it is today. Today’s vaccine schedule is definitely fuller and has more vaccines than ever before.

Some of the vaccine information in my textbook is outdated, but what the CDC was saying in that book is the same thing that they say today – that vaccines are safe and basically wonderful. I hear that all the time, but I know that it is not true for everyone. It was not true for my brother. My brother, Ronan, was affected by vaccines but not in a good way. He lost some skills and abilities after he was vaccinated. He was doing okay before them, but now, he’s non-verbal and has autism.

When the topic of vaccines comes up later this semester, as nervous as I may get, I feel that I must speak up and say something about them. I’ll share my brother’s story. I’ll tell my classmates that I don’t want them to have the wrong information about vaccines. I will tell them even though the textbook only has good things about vaccines, they need to read more about them including vaccine have side effects. But I won’t have to worry about discussing that yet because we are talking about nutrition and food-related illnesses in class now.

We’ve discussed bulimia, anorexia nervosa, diabetes, cardiovascular disease and high blood pressure. None of us in the class have problems with those diseases, but we all agreed that knowing about those diseases was good. The more we know, the more we can know how to avoid them. We also all agreed that we should make better food and nutrition choices too because it’s good for our health.

Since nutrition is an important topic, we were assigned to do a project on it. I worked with another student and presented information about the six classes of nutrients, how water is beneficial for health, and how a healthy diet can help change society for the better. We offered suggestions about making healthy snacks at the end of the presentation. Everyone liked what we shared, especially because we brought yummy treats to sample. We did that to show examples of what vitamins and minerals were found in foods that a lot of us already eat.

Things Will Only Get Better. But When?

By Cathy Jameson

I heard one of my favorite songs when I was grocery shopping on Thursday morning. Its lyrics ran through my head later that evening…

My youngest called out for me after she’d gotten herself in bed on Thursday night, “Mommy, aren’t you going to come tuck us in?”

Hesitating, I replied, “I’m sorry, honey. I can’t right now,”

“Why?” she asked.

“Ronan’s had some seizures. I can’t leave him yet,” I answered.

“Oh.”

I could tell that she was crushed. For a little kid, going to bed without a hug and a kiss can be devastating. I promised my daughter that I’d try to be there soon and added that if I wasn’t, she should go to sleep. I’d check on her later.

That didn’t go over well.

I turned my attention back to Ronan, but I heard a small voice at the doorway. “Mommy? Can you tuck us in here, in Ronan’s room?”

Offering a smile, I said, “Of course. Come here so I can give you a hug.”

She fell into my lap for a hug and kiss. Ronan’s other sister and his little brother weren’t too far behind. Eventually, Fiona, Ronan’s oldest sister also joined us. Taking turns to get a hug from me and to give Ronan a kiss goodnight, the siblings sat down on the floor next to Ronan’s bed.

“Mommy?” Izzy asked, “Is Ronan going to be okay?”

Trying to be positive, I answered, “I hope so, sweetie. He had a few small seizures before we said prayers, and he’s had some more since. I’m going to stay with him in case he needs me, or in case…things…get... In case things don’t go well. But don’t you worry…”

Interrupting me, Izzy said matter-of-factly, “Mom. I have to worry. He’s my brother,”

I turned away. I didn’t want her to see me cry.

Toward the Past

By Cathy Jameson

I was thinking about a friend last Thursday. Out of the blue, she texted me on Friday. Wanting to check in on Ronan and to offer a suggestion that may help him, I was touched that she reached out. With how busy I’ve been, I haven’t had a chance to talk to her yet. Her son is leaps and bounds ahead of Ronan and inching closer and closer to recovery, so I look forward to hearing more about what she has to say. I’ve liked other things she’s shared in the past, especially a blog she wrote called Backwards Day.  If you haven’t read it, I’d encourage you to take a few minutes to do that. I bawled like a baby the first time I saw it. I cried rereading it again last week.

I’ve been thinking about that blog all week and how backwards some of life has been. I had no intention of watching my child’s health and development spiral backwards, but that’s what happened when Ronan regressed. Before I knew how that happened, I went back to look at events that I documented on our family calendar – to the well-child appointment date compared to the date when seizures started. I’ve gone back in time to pore over the pages of our family photo album – to a baby picture where Ronan was smiling and interactive to the one that shows a droopy, expressionless gaze. I’ve found myself slowly flipping through Ronan’s baby book to look back at certain pages – to the specific page where I’d started writing down the dates of milestones that Ronan achieved to the blank lines showing where those milestones abruptly stopped. As painful as it was to go backward and to look for clues, I found what I was looking for and successfully connected the dots to Ronan’s vaccine injury.

Written a decade ago, I documented Ronan’s vaccine injury story in a booklet. We sent it family, friends, and to new parents who wanted to know more.

I don’t do it as often as I used to, but over the years as I’ve tried to make sense of things, I’ve had to force myself to go backwards – to replay conversations I’ve long forgotten, to revisit actions I wished I’d never taken, and to relive Ronan’s vaccine reactions that I now know how to avoid. Some people say I shouldn’t, but in certain circumstances, I think it was wise to go backward. It’s then that I could plainly see what went wrong and when. I could also see where time and Ronan’s development stood completely still. Not wanting to continue that trend, I used past experiences to shape a new path – one that I’d hoped would catapult me and Ronan forward.

I try to go forward and do so always hoping, praying and believing that progress is just around the corner. But, some days, progress is nowhere to be found. Instead of tippy toeing toward more typical behavior and accomplishing those milestones that Ronan left behind, it feels like he and I are either at a standstill or worse that we are actually physically spiraling backwards again. Ronan is less aware of how far behind he is, but a setback, an illness, a rash of seizures like he had on Tuesday, or a returned fixation of 30-seconds of a Baby Einstein song played a minimum of 200 times a day can really do a number on me.

Best of: Too Many Too Soon Too Little Too Late

We're running Cathy Jameson's 2013 post today after The American College of Pediatricians  wrote that, There have been two case report series (3 cases each) published since 2013 in which post-menarcheal adolescent girls developed laboratory documented POF within weeks to several years of receiving Gardasil, a four-strain human papillomavirus vaccine (HPV4).^1,2  (See here.)


By Cathy Jameson

For years we’ve been bombarded with multimillion dollar advertisements promoting the HPV vaccine known as Gardasil.  Commercial after commercial, whole page magazine ads and posters at subway stations sent more fear than facts to the public about the human papilloma virus (HPV) and its role in cervical cancer.  

Even though I do not care for this particular vaccine, I make an effort to stay updated whenever news comes out about it.  I do this because my oldest falls into the age category for which the vaccine is recommended.  The vaccine, originally designed and heavily pushed on the teenage population, can be administered as early as 9-years old.  After a rather hasty vaccine “safety” study period, the 3-series Gardasil vaccine became available in 2006.  Cervarix, also marketed as a cervical cancer prevention vaccine, debuted in 2009 is an alternate to Gardasil.  

Like every vaccine that came before these two, reactions post-vaccination were documented and reported in the VAERS database (Vaccine Adverse Event Reporting System).  Currently, almost 32,000 adverse reactions have been reported as well as 144 deaths.  Despite growing concerns about Gardasil and Cerivax, and about the increasingly serious and fatal reactions young girls have had from them, it was suggested in 2011 that boys as young as 11-years old also receive the 3-shot series.  

During the campaign to sell, sell, sell this product, we were told that the HPV vaccine would be an answer—an answer to help prevent cervical cancer.  We were told those who got the vaccine would be One Less:  One Less to chance it.  One Less to catch the disease.  One Less cancer victim.  We were also told that 3 doses were recommended for the series to be effective.  Reports are now saying 3 vaccines may be two too many though.

Good news for less jabs, right?  

What, then, should we tell the girls, and now possibly the boys, who got sick from their 2nd dose of the vaccine?  Who tells them, “Oops, sorry.”

To the Autism Mom in the Waiting Room

By Cathy Jameson

I see you. I see you sitting over there, but I won’t make any eye contact today. I won’t because I can tell it hasn’t been a great day for you.

Maybe you didn’t sleep well. Maybe your son didn’t either. Maybe that’s he’s been up since 3 a.m. which means you’ve been up since 3 a.m. also. Maybe in those early hours you’ve had to deal with poop, lots and lots of poop. Or stims. Or both. Maybe you’ve been cleaning up poop and listening to stims all morning long. Stims make your kiddo happy, but what a number they can do to your patience!

Whatever it was that set off your day, I hope tomorrow is easier. Because today looks like it’s been awful. And I’m sorry. And now you’re sitting there on your side of the waiting room hoping that no one will notice you or how tired, sad, and frustrated you are. I recognize that on your face and in the way that you’re sitting. I know that you’d rather be curled up in the fetal position in the corner, but that’s not an option. You’re trying to melt into your seat, and that’s my cue to keep my distance, to keep a friendly smile to myself, and to not even think of making any kind of contact with you. I’d like to because I’ve seen you in here before, and you seem like a really nice person.

The last time we shared the waiting room area, my son was the one with the off-the-wall behavior. Remember that? Remember his behavior and how it escalated? And then how long it took for him to calm down? I thought it would never end. As much as the other waiting room parents tried not to look and tried not to listen that morning, I know they couldn’t help but watch and listen. We must’ve looked like a train wreck. It was my turn to be mortified that day. Today, it was your turn.

Both times, no one scoffed. No one complained. No one judged. That’s because we all get it. We all live it. The frustration. The humiliation. The sadness. I’ve felt it. It washed over you once you knew that your son was safely in the back with the therapists. That’s when my heart broke into a thousand pieces for you, which is why I want to tell you something.

No matter who you are, those emotions are never easy to deal with. Add in some non-verbal regressive autism aggression? It’s far from easy. I know. But the way you handled your son this morning – his constant stimming, the loud outburst, then the intense yet understandable behavior right before the therapists called his name – that was incredible. You calmly guided your son. You quietly held yourself together. You stood there wishing you were invisible. I don’t know how you did it, but you also stood there full of grace.

I totally get why you need a break now and why you don’t want to look at anyone or talk to anyone or think about anything at all right now. You’re stuck here. With strangers. Feeling utterly and completely overwhelmed. In a waiting room.

Waking Up to Vaccine Reality

By Cathy Jameson

Welcome, new moms! We’re glad to have you join us…

I see vaccine-related posts all the time when I log in to Facebook. Not a day goes by that I don’t see some vaccine link being shared. I sometimes feel overwhelmed when I see that topic in my newsfeed. That’s because some days, the news isn’t good news - people are still being injured by vaccines, vaccine efficacy is waning (but we should still go out and get that bum vaccine anyway!), and mandates are looming. It can all be rather depressing. I’ll admit that I’m guilty of clogging my friends’ newsfeeds with all sorts of vaccine news and information, but that’s because when you’re a parent of a vaccine-injured child, being vocal about vaccines can easily become a habit.

Last week, logging onto Facebook was no different than other weeks. I saw posts about the Zika vaccine, about the Tdap vaccine, and about the DTP vaccine. I saw those being mentioned in some FB groups as well as on some of the autism advocacy and vaccine safety pages that I frequent. Not surprisingly, I saw those posts on friends’ walls, too. I expect to see that from certain friends, especially the ones who have a vaccine-injured child who is also on the autism spectrum. But last week when I saw that news pop up in my newsfeed, I didn’t cringe like I sometimes do when I see a vaccine link. I did a double take instead.

The posts that I saw were not being shared by moms like me. These moms were different. Their kids were different, too. The kids didn’t have seizures. Their weren’t in therapy. They weren’t in self-contained special ed classrooms either. It was a different population of moms fairly new to the online vaccine scene who were chiming in, and I couldn’t believe it. Typical moms of typical children were sharing articles about vaccine bills, about vaccine ingredients, and about the vaccine schedule. All out in the open and on Facebook!

I didn’t want to question why, but why? Why did these moms go from completely silent on what’s become a controversial topic to linking these sorts of articles to their FB walls? And why all of a sudden now? My mind was spinning.

Maybe they saw the 2016 schedule and were shocked at how many vaccines there are.

Yes, Virginia, Your Vaccine Exemptions Are Safe…for now.

By Cathy Jameson

Word spread quickly in several of my online groups that Delegates in the Commonwealth of Virginia had introduced a vaccine bill. Like other vaccine bills that have popped up in other states, HB1342 was a bad bill.

As quickly as the bill was introduced, it was assigned to a Subcommittee and added to the next Health, Welfare and Institutions Committee’s agenda. It was imperative that those who opposed the bill act quickly. Virginians wasted no time. Representatives were contacted. Travel plans were made. Parents, providers and many, many others helped to spread the word. I was one of those parents.  

Since I could get to the hearing where 3 minutes of public testimony was to be included, I drafted a short speech.

Delagate Filler-Corn, Dr. Stolle and other Members of the Committee,

“You know your child best.”

As the mom to five kids, I’ve heard that statement several times over the last few years. I hear that one and that I should always trust my mother’s instinct. I’ve made mistakes before when I didn’t listen to my instinct which is why I’m here today. My gut tells me that HB1342 is a bad bill. I’d like to tell you why.

This bill violates existing law that protects religious and parental rights. To take those rights away, something that so many in the Commonwealth have fought to secure, preserve and protect, is incomprehensible.

HB1342 not only violates religious rights and personal rights, it undermines our doctor and their ability to work with my children, including my son who was severely injured by vaccines. Finding the right doctor to attend to that injury took time. Our doctor understands my child’s healthcare needs well, not you, Dr. Stolle, nor any of the other members of this committee. This bill would prevent my son’s doctor from using professional judgement which would impede them from appropriately treating him. That, plus mandating vaccines while also restricting the existing medical exemption, which is what HB1342 would do, is unethical and would not serve any of my children well.

I could now cite a few statistics for the committee, like the fact that Virginia has a high vaccine rate despite already low exemptions rates, or I could remind you that those who manufacture vaccines have no liability for their product and that those who administer them can do so without being held accountable for any injury or death resulting, or I could point out that the CDC states that all vaccines come with risk, or I could make it clear to you that when there is a risk, there must always be a choice, but I’ll leave you with a final statement and a request instead.

HB1342 is an overreach of the government. I respectfully ask that you withdraw this draconian bill and refrain from introducing other bills like it.

--

I never had to make that speech. Thankfully, HB1342 was stricken from the docket soon after the Health, Welfare and Institution’s Committee meeting started. I was overjoyed.

There Was a Pharma Had a Dog.

By Cathy Jameson

Today’s post is inspired by a BINGO game a friend shared on her Facebook wall. The squares were full of cute ideas meant to keep kids busy during a snow storm. I saved the link thinking that it could come in handy for my kids—our area is expected to get 2 feet of snow. The boredom factor could hit an all-time high before the weekend is over.

The BINGO board I made to accompany this post isn’t to keep boredom at bay; it’s to be used whenever you read an autism or vaccine mainstream article, like the one I read late last week.

--

Melinda Gates is frustrated with Donald Trump.  After reading her latest interview in the Huffington Post and why she’s miffed, I’m a little bit frustrated, too.

In that interview, Melinda bemoans the fact that The Donald is misinforming people. She goes so far as to say that his claim that childhood vaccinations can lead to autism is “ridiculous”. Gates also thinks that Trump should use his platform as presidential candidate to educate people. Isn’t he doing that, though, in making those vaccine-autism assertions that he’s making?

Yes, he is!

(Thank you, Donald!)

But the article refuses to cover Trump in a good light and instead takes a typical turn that many mainstream news articles take when vaccines and autism come up. That’s when the writer regurgitates a memo that the media has yet to stop circulating. If you’re new to the vaccine-autism scene, the message in that memo includes the following words and phrases and can be found in many a mainstream piece, including the one from HuffPo:

discredited

1998 study

British doctor

debunked

link between vaccines and autism

autism is not related to vaccinations

You’d think that by now that the mainstream news would have some new content for their pieces, but it’s the same old words, the same old phrases, and the same old “science” in every single pro-vaccine article after article after article. Those articles are not just frustrating to read, they are getting boring to read, too!

Dream for Tomorrow

By Cathy Jameson

When I wrote this two years ago, the first sentence was, “Today autism affects 1 in 50...” Today’s updated version includes a different autism rate. As much as I’d hoped that, by today, the rate would’ve dropped. But it hasn’t. Something else that I’d also hoped was that, by today, groups like Autism Speaks would to do more than just promote awareness. But they haven’t. And, I’d hoped that all of the presidential candidates would want to prevent autism in the future. But they don’t appear to care to.

With the higher rate and with the continued lack of concern, today seems so dreary. Sometimes it truly is. I need to wash today’s dreariness away. I will be sure to do that tomorrow…

Today, autism affects 1 in 45.  Odds are that more families will find themselves closer to an autism diagnosis today than yesterday.  Today doesn’t sound too promising, does it? 

Several times in his now famous speech, Martin Luther King, Jr. used the word today:

“I am happy to join with you today in what will go down in history…

…a great American, in whose symbolic shadow we stand today…

…we have come here today to dramatize a shameful condition…

It is obvious today that America has defaulted on this promissory note …

…as evidenced by their presence here today, have come to realize that their destiny is tied up with our destiny…

I say to you today, my friends, so even though we face the difficulties of today and tomorrow, I still have a dream.

I have a dream today.

I have a dream today.”

I have a dream also.  But my dream is for tomorrow. 

As far as autism is concerned and how it affects my son, today breeds dread and frustration.  It capitalizes on my fears.  The worry I have about autism and for my son keeps a tight grip on me.  It can strangulate my thoughts and shroud my thinking. 

Afraid of what isn’t being done for Ronan and for a great many other children, today brings no solace, just anxiety.  Looking outside of my own home, today doesn’t look so good in other places either.  Newspaper headlines in America promote ineffective flu shots as our best defense against a temporary sickness.  They sing praises for immature celebrities’ behavior while neglecting to address a growing national crisis.  Headlines scream Look here! Look there! But just don’t look at autism.  Look the other way instead.

How can they tell us to look away?  Autism is a crisis that affects thousands.  From one side of our country to the other, it’s crept into more communities than ever before.  But today in the papers, and within the groups that should care about it, the autism epidemic goes unnoticed.  So do the nightmares that come with it.  

So, I’m not living for today.  I’m not dreaming about it as Martin Luther King, Jr. did.  Instead, my dream is for tomorrow. 

Hillary Clinton’s Autism Plan Fails to Impress

By Cathy Jameson

Hillary Clinton was First Lady from 1993 – 2001. During that time, the autism rate jumped from 1 in 500 to 1 in 250. The autism rate increased again while she was a New York State Senator (1 in 110) and when she served as US Secretary of State (1 in 50). The latest autism numbers from the CDC tell us that 1 in 45 are affected.

--

Autism was not on my radar in the early 1990s. I didn’t give it a second thought in the early 2000s either. It wasn’t until the mid-2000s when my son, Ronan, was showing signs of the spectrum disorder that I fully immersed myself into reading everything I could about autism. In the hopes of helping other families, I shared much of what I learned with others.

From message boards to private emails to face-to-face meet ups at local and national autism conferences to being asked to write for autism-specific publications, I’ve shared a lot about autism in the last ten years. During that time, I don’t ever remember Hillary Clinton being part of, let alone a personal champion for, the autism community. In fact, it wasn’t until the last week of 2015 that I ever thought to use Hillary Clinton and autism in the same sentence, and that only happened after I saw a Bloomberg Politics teaser. I had my reservations that her plan wouldn’t be more than just a nice gesture, so I, like so many others, waited patiently to see what the presidential hopeful’s thoughts on autism would be.

I saw the plan,  and as the parent of a child with regressive autism, I’m not impressed.

I reread the plan in its entirety and noticed something. Teresa Conrick gave a synopsis of the plan,  and she, as well as another parent also knee-deep in autism advocacy, made the same observation that I did. Nowhere in Hillary’s plan does it include autism prevention.

Why not?

Dear Hillary, Can We Talk?

By Cathy Jameson

I saw a teaser from Bloomberg Politics last week while we were visiting family on Christmas vacation. I tried to stay away from the news and relax, but when I saw that autism was mentioned in the headline, I took a minute to find a quiet place to read the link.

The link truly was a tease! Very little information was offered, but as the parent of a child with autism, I’m very much looking forward to reading what the former Secretary of State has to say. I’ll readily admit, though, that as the parent of a child with autism—whose autism is a result of childhood vaccines, I am hesitant to get too excited about the plan that Mrs. Clinton is about to unveil.

Clinton, currently a presidential candidate, was quick to point out in early 2015 that she, a grandmother of one, knows best about vaccines. As the mother of five, whose two sons were adversely affected by vaccines, I beg to differ.

I could be wrong, but with her past statement, I don’t believe that Mrs. Clinton is ready to fully support me or my son with autism.

For many parents, we clearly know that vaccines and autism went hand in hand – and not in a good way. Unless her plan includes preventing autism, which means also addressing the out-of-control vaccine schedule, I don’t hold out too much hope that her autism plan will be more than be a nice gesture.

I am tired about hearing that we should be doing something about autism and would rather actually do something about the disorder. I’d rather not wait for another “Autism President” to talk about a plan that will go nowhere. That said, I fully support what other people are saying we need to do about autism. Lisa Wiederlight’s recent proposal to the Interagency Autism Coordinating Committee (IACC),  a federal autism advisory committee, was spot on.  I can get behind her plan and hope that others, including Mrs. Clinton, will as well.

Wiederlight, Executive Director of SafeMinds and parent of a teenager on the autism spectrum – and someone who I can identify with, recommended creating four working groups, including one that sounds similar to one of the bullet points mentioned in the Bloomberg link – to provide support for parents/caregivers.

Family Ties

By Cathy Jameson

Ronan had seizures soon after waking up on Christmas Eve. Far from home, the last thing I wanted to worry about were seizures. Taking turns early in the day, someone in the family stayed close to Ronan and sat “seizure watch”.

Extended family was also close by, so we had more sets of eyes and ears to keep watch over Ronan. The extra set of eyes and ears were most welcomed. Everyone generously took time to check in on Ronan.

Family is important to me. They always have been. I welcome their presence and look forward to seeing them. Since we go long stretches in between seeing each other, I also welcome observations they make regarding Ronan. Where I see the baby steps Ronan painstakingly makes, extended family tends to see great strides in his development.

As in the past, their recent observations have not been disappointing.

Extended family notes that Ronan is more aware. He is a bit more vocal. They see an incremental increase in awareness to what others are saying to him, too. They see that he understands and complies more readily to requests being made of him. They like that Ronan is responding to what others are asking him to do and that he’s participating more in group activities, like family prayers. Before, he wasn’t fully cooperating or showing any interest in joining us. He’d wander off, either physically or mentally, showing no interest in what the rest of us were doing. Some say it’s as if there’s more of a family feeling about him.

Something else that some family is noticing is a change in Ronan’s facial expressions. His expressions and his demeanor seem more typical. It’s only after Ronan tries to express himself, and fails to, that Ronan’s difficulties become observable again. While those difficulties still exist, our extended family is encouraged by what they see. I am, too.

We knew that this journey would include hurdles and detours.

We knew that it would be a marathon and not a sprint.

Coming of Age with Autism

By Cathy and Fiona Jameson

This conversation started when Fiona, my 14-year old daughter, and I were driving home from grocery shopping on Friday afternoon. We continued to add to the conversation after we got home. I wanted to share it for today’s Sunday post. It’s dedicated to Ronan. He turns 13 tomorrow. Happy birthday, Ronan! May you continue to bring us hope, happiness, and joy.

xo, Cat

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Mom, can you believe Ronan’s birthday is on Monday?

I know. I really can’t believe it.

He’s going to be a teenager! I should tell him about things that will happen when he’s a teen.

What kind of things?

Like what to watch out for when he’s out of middle school. Like which people he should hang out with. Like which people he should not hang out with. I’d tell him about what’s trending and which things to follow.

You know that Ronan doesn’t understand a lot of that and that he’s not interested in the things you are. Your teenage years could be very different than what his might look like.

Yeah. I know. But I envision him getting better.

I do, too, honey. I always hope that he will get better.

When he’s better, Ronan will be able to do a lot more than he does now. I need to make sure he doesn’t get in trouble with his friends for talking too loudly during class. He needs to make sure to follow the rules. He’ll have to get used to new stuff like being able to adapt to changes in his environment and routine. I need to help him wear the “cool” clothes, too. He’ll need to get a new phone like an iPhone, not to play on like he does on our old phones but to use it to call or text people.

Well, Ronan can’t talk yet, so I guess you have faith that he someday will and that he’ll need a phone to tell people what’s on his mind.

Yes!

Fiona, do you ever envision Ronan being able to do other typical teenage things?

Like what, Mom?

Like…being interested in girls, maybe? Or try out for sports?

Oh, yes! I would make Ronan to show me a picture of who he likes. I’d ask him to tell me about the girl. I would let him know which girls I think are nice and also warn him who not to hang out with.

As for sports, I want him to try to do soccer or baseball or bowling. If it’s soccer, I could help him since I’ve played it before. If it’s baseball, I’d ask my friend, Josh, to help. Josh played baseball before, and he knows Ronan pretty well. And I totally trust him with my brother. Ronan also loves bowling on the Wii. We should take him to the bowling alley more often. I know that he’d love that!

You know Ronan took notice of the bra and undies department at the store last week.  I was shocked when I saw him do that. But then secretly, I was all kind of excited. It make me think that maybe parts of Ronan are typically developing.

Autism and Behavior Therapy: Taking the Next Step

By Cathy Jameson

Ronan usually wakes up sluggish around 9am. He woke up bright and early at 4am on Monday last week. I had woken up just a few hours earlier because of a nightmare. I tossed and turned through the early morning hours, but ended up getting only 3 hours of sleep. I knew it was going to be a long day for both us. Thankfully, extra help was on the way. Ronan’s therapist would be here at 10am.

Ronan was in good spirits despite the o’dark-thirty wake up. He continued to be chipper and active when his therapist arrived later that morning. Explaining how the day had started, she was pleased to see that Ronan was so happy, but she knew he’d soon tire. With that in mind, we rearranged and shortened the day’s agenda. Even though we’d scaled back some of the activities, we kept with the plan to go out into the community.

For the last few weeks, after watching Ronan display an increase in negative behaviors when we were in town, we’ve been practicing going out. In the past, some outings with Ronan have ended terribly.  Not every one of our outings turns into a horrible, terrible, no good, very bad day, but toward the end of the summer, Ronan’s behaviors were consistently tanking. With each attempt I tried to get Ronan out the door, in the car, out of the car, to the store or to wherever it was we were going, he got more and more frustrated. He also started to become somewhat aggressive.

Ronan doesn’t like to be frustrated, and I don’t like to see him get to that point either. When the every-now-and-then negative behaviors began to occur more frequently, a friend of ours suggested that I look at Applied Behavior Analysis (ABA) therapy again. It’s worked for us before, and since I’d tapped out of my knowledge and ability to redirect Ronan to more appropriate choices and behaviors, I knew that it was time to ask someone else for help. I’m glad that I did.

Vaccine Discrimination in America

By Cathy Jameson

I knew it was coming. With how 2015 was full of fear and vaccine bullying, I’m not surprised that vaccine discrimination would be next. Many of us have already experienced it privately in one way or another, some by a pushy physician at a medical clinic and others by a bossy school nurse, and it looks like more places are officially adopting the practice.

No matter where or when it happens, being discriminated against is uncomfortable. When that discrimination includes judging, trampling ones parental rights, and denying medical treatment, it’s more than uncomfortable. It’s downright frightening.

I’ve yet to be completely turned away from a clinic or from receiving services after being asked what my child’s vaccine status is. Most of the time, it’s no one’s business to hear that sort of personal information. Other times, when vaccines could be relevant, I tread lightly when offering that information. If I fear that treatment could be jeopardized, I tend to begin with a caveat, “Because my son suffered a vaccine injury, we do not completely follow the recommended vaccine schedule…” and hope that the person who’s listening is actually listening to what I’m saying. Most of the time I am being heard, but one night several years ago, I was not.

That happened when I brought my daughter to the Emergency Room. She’d been fighting a viral respiratory infection for just over 24 hours. With how young she was at the time, I knew it could turn into a serious situation. I’d consulted with our pediatrician, followed her suggestions, and was able to bring some relief during the day. Unfortunately, though, things went from bad to worse - and quickly - once night fell. Knowing that she needed help, I bundled my baby up and headed to the ER.

We were ushered back right away, but instead of treating my child, the ER doctor we were assigned insisted on wasting time. That began after his question, “Are vaccines up-to-date?” was answered with my, “No, we’re selectively vaccinating.” response.

At that point, the doctor completely ignored the medical emergency that my daughter was presenting and opted to berate me about vaccines. In an attempt to belittle me in front of the team of night-shift nurses, who were standing at the ready waiting for the doctor to respond to and act on my daughter’s current condition, he continued to question me. The nurses said nothing, and when the doctor continued his tirade, the nurses looked down. Knowing my rights, I didn’t let that man’s words bother me. I kept my head held high and calmly waited for the doctor to finish the verbal assault.

Giving Thanks for Autism Parents

By  Cathy Jameson

This post is dedicated to those brave parents who came before us. Thank you for blazing a trail.

Ginger Taylor’s Facebook status earlier this week caught my eye. For those who do not know Ginger (see here) or the work she does in our community, normally, she is the one offering help. This week, she was asking for it.

ATTENTION PARENTS WHO HAVE BEEN DOING THIS CRAP LONGER THAN I HAVE!!!

In 2004 when I got here, we met in yahoo groups to figure out what the hell had happened to our children, and how to help them... remember?

Any one remember those groups? Where we all meeting for autism biomed info BEFORE Evidence of Harm came out?

I HAVE TO FIND THOSE MESSAGES! The first mom who helped me... I have to find her and thank her! It was on one of those boards!

-

2004

That year I, too, began to ask others for help. I knew that Ronan’s doctor wasn’t going to be the one to provide the answers that I needed, so I did what so many other parents had to do: reached out to the world wide web for guidance.

Like Ginger, I joined, read, and began referencing hundreds of posts on message boards. With the information I would find and read online, I’d later run over to our local community college library to continue to read. I read scientific journals. I scanned through medical textbooks. I requested books through the state’s interlibrary loan system. I checked out the few autism books available at the time and searched other neurological conditions while continuing to read and reference information on the web.

Shared Autism Resources

By Cathy Jameson

I love it when I find a helpful book, magazine, or resource that I can share with others. I love it even more when I can contribute to that helpful resource. That’s happened a few times outside of what I share here on Age of Autism. I’m always grateful for the opportunity to share my thoughts and my family’s experience other places. I am especially grateful when I get to do that within the pages of The Autism File Magazine.

One of Ronan’s doctors saw a recent issue of the magazine that showcased Ronan on the front cover. She asked for a copy of it, so I told her I’d print the article for her. She said that would be great, but she really wanted a framed copy of the front cover photo. She wanted to hang it in the waiting room of her clinic so that all of her patients could see it. I can’t tell you how honored I was to know that one of Ronan’s most helpful providers wanted to show us off.

Other Age of Autism writers and long-time AofA supporters have also been featured in The Autism File Magazine, too. If you haven’t seen this magazine yet, here’s a description of the publication from their website:

Since the first issue of the magazine appeared in 1999, the Autism File has been described by readers as a “lifeline”.  “Thanks to the most knowledgeable experts and experienced parents from around the world, we’re able to present cutting-edge content and critically needed support to families affected by autism,” said the magazine’s founder and Editor-in-Chief, Polly Tommey.  “The new digital format will allow parents and professionals—no matter where they live—to have immediate access to the crucial information provided by our contributors.”

 

Autism Super Sibling: "Worth It!"

Note: Thank you to Miss Fiona Jameson, daughter of our own Cathy Jameson, for this wonderful post.

By Fiona Jameson

The topic of a person’s worth came up during a recent discussion in one of my high school classes.  We were talking about how some people assume that kids with disabilities are not able to think because they have cognitive developmental delays.  That assumption is false.  

Kids with disabilities are able to think.  Some kids with disabilities have some level of being able to choose for themselves.  Some are able to ask for help and can also express emotions.  I thought this was a great topic to discuss because it pertained to a very interesting lesson and because my brother has given me insight about it.

The teacher and my classmates know a little bit about my brother, Ronan.  They know that he has autism and that he is non-verbal.  They know that he needs help with lots of things like going to the bathroom, getting dressed, and being safe.  I think that’s why the teacher asked me specifically during our discussion, “Fiona, do you think Ronan is able to form thoughts in his mind?”  I immediately thought about how Ronan gets a thought in his head, like that he wants to eat a cookie, and he acts on that thought by asking for help to get the cookie.  I was excited to answer her, “Yes, he is!”  I was excited also because I felt like the teacher actually understood Ronan and understood why it was important for me to talk about him in class.  

I’ve been able to share more of Ronan’s story in class.  I share that he has value just like I and my classmates do.  Some people look at Ronan and might think that he doesn’t know how to act around other people or do things like “normal” people.  Well, sometimes, Ronan doesn’t know how to act around other people or do things like “normal” people.  That’s where I tell people that Ronan may be different, but he’s still a person.  He’s just as important and worth being given respect just like you, me, and everyone else.  

Ronan is worth fighting for.  He’s worth being cared for even if it takes a lot of time and money.  He is worth being loved for who he is.  As his sister, I’ll make sure that someone always fights for him, cares for him, and loves him.    

Fiona Jameson is a freshman in high school.  She loves to play volleyball and had a successful season playing on the JV team.  Fiona hopes to be a photographer, interior designer, baker, professional volleyball player, and a Mom when she grows up.  

Your Life Narrated by Me, Your Mother

By Cathy Jameson

I noticed something the other day.  I talk a lot.  I talk more now than ever before.  It’s not all the time that I’m a Chatty Cathy, but when I’m with Ronan, I don’t shut up.  I am still somewhat reserved other times like when it comes to first-time meet and greets with new people that I get to meet.  Other times, though, I’d rather sit at the back of the group, out of sight and nestled a corner or in the back row. I can’t do that when it comes to taking care of Ronan, though. That’s when I don’t mind sticking my neck out to be seen.  Nor do I mind raising my voice so that I can be heard. 

I realized how much I talk when I’m with Ronan when he and I started out last week to get to an appointment.  I caught myself non-stop talking while I was holding Ronan’s hand.  As we walked into the therapist’s waiting room I said, “Keep going, you’re almost there, step over the toys, careful…careful. Sit down, hold on, stay with Mommy.  You did it!”  After we sat, I stayed close to Ronan stroking his back while we waited for his name to be called. 

The video playing on the television was a tad loud, as were the other patients and their siblings who were also in the waiting room, so I leaned in and quietly spoke to Ronan, “You like this movie?  It’s called ‘Cars 2.’  Remember we saw it at the theatre with Daddy.  Oh, look!  That part made you laugh.  Hey, it’s your turn now.  Stand up, let’s go.  Come on, watch your step.  Down the hallway, here you go!  Okay, bye now, Buddy.  I’ll see you in a little bit.  Kiss.” 

How many times have I done that—given a play-by-play of exactly who, what, where, when and why? And did I really need to narrate the entire trip into the clinic and into the therapy room?  Did Ronan care that I was observing and noting all sorts of things as we went?  Did he see all of it as we went by?  Did he hear it?  Of course, he heard it.  But, I wonder, does Ronan tune me out like he seems to tune out so many other things in his environment? 

Why do I think I need to state every step and every action?  I guess part of it is because I’ve had to remind Ronan several times about the same thing (walk OVER the toy, not ON it; and put your cup in the sink, NOT the trash can).  Maybe I talk so much because I want a little bit of feedback. Ronan has some sort of understanding of what’s going on in the world, but, since he’s still just barely pre-verbal, the only reliable feedback I get is from me as I talk to myself. 

Who knows, though, maybe with all this chit chat that I do for Ronan will have him one day spontaneously respond, “Ma, cut it out.  Okay?  I can do it by myself now.  Watch me.”

I already knew that I rolled out a constant narrative other places.  These situations are different than the daily action-packed descriptions that I just realized that I do.  For the other times, I’m consciously aware of what I’m saying.  In fact, if I don’t speak up I feel like it’s a disservice to Ronan.  Like when I take Ronan to a social outing at a busy park or to a fun gathering for my typical children.  Before a genuinely curious but terribly mannered kid has a chance to rudely stare or squawk at the strange-acting child (mine) I start a dialogue with Ronan, “Hey, Buddy.  Do you want to go over there? (reaching for Ronan’s hand and walking him to the jungle gym).  Hold my hand.  Let’s go!  Steady now.  We’re almost there.  You’ll love to climb that.”  And off I scurry with Ronan—hoping to be far away from the gawking kid who, was never told that staring at other people is rude, and closer to more activities that Ronan is able to do at his own rate with success. 

Of course, it could be a wonderful learning moment for the staring child to know why Ronan looks a little bit odd and acts a whole lot different than other kids, but I have enough teaching and coaching to do for my own child. 

Autism Advocacy: Who Speaks for You?

By Cathy Jameson

I haven’t always been an outgoing person.  When I was younger I was somewhat shy.  I would avoid raising my hand in class and would steer clear of a crowd if I saw one ahead of me.  Staying quiet, I preferred to be in the background.  As the parent to a non-verbal child with regressive autism, I no longer have that luxury.  I cannot remain silent.  I have to speak up.  I have to speak for Ronan and also for myself. 

When Ronan first lost his ability to talk, I looked to Autism Speaks as a resource.  Founded in 2005, I no longer believe that they speak for me nor for Ronan. 

 

Screenshot from AS’ website, 17 Sept 2015

My son wanders.  He has seizures.  He requires round-the-clock care.  I do my best to find and support groups in the autism community that hold the same values and expectations that I do.  It’s a shame that an organization as large, profitable, and recognizable as Autism Speaks made a statement that once again refused to acknowledge and accept what so many parents have come to discover - that vaccines did in some way contribute to their child’s autism.  Their latest statement reminded me to be careful which groups and which people I pick to speak for me and for Ronan. 

Since my son, who was affected by vaccines and who has autism, can’t speak for himself, I must advocate for him.  I do that with the help of my husband and with professionals we hire to assist us.  Typically, it is I who oversees and ensures that Ronan’s medical, educational, and therapeutic needs are being met on a daily basis.  If something isn’t going well, I have to speak up.  I have to address the issue.  I have to communicate that there is a problem.  Thankfully, the team of people we consult on a day-to-day basis for help and for treatment do whatever they can to assist us.  I value our team’s input and let them know how much they are appreciated as we work toward common goals:  to help Ronan, to teach him useful skills, to bring him to better healthy—because autism is medical, and to bring him opportunities so that Ronan can be as active and as happy as he can be. 

When we’ve gained new people as Ronan moves out of one phase and into a new one, I’ve had to learn to navigate those new phases and new demands.  During that time, I tend to ask a lot of questions.  Some days I’d love to be quiet, but being quiet doesn’t help Ronan.  So I find myself speaking up and searching for answers.  In my search, so that I can better advocate for my son, I have to once again go outside of my comfort zone and look to others for help.  I sometimes have to look beyond my local area for help.

The Sunny and Not So Sunny Days of Autism On the Airwaves

By  Cathy Jameson

It would be difficult, if not impossible, for someone to create a character that depicts all that autism encompasses.  From the very high functioning, who are able to live day-to-day independently, to the lower functioning individuals, who will never be able to live on their own, there’s a reason why autism is called a spectrum disorder. 

Affecting one’s language skills, social skills, and other developmental skills, the disorder has been identified in 1 in 68 children.  Using data from children born in 2002, the current rate of 1 in 68 was announced in the spring of last year.  Many believe that the autism rate is much higher than what the officials chose to present.  Data used to calculate the current rate does not include my son nor other children.  What about the many children who’ve fallen onto the spectrum since 2002?  They exist.  When will they be included in the national number?  My guess is not for awhile.  I don’t think the public is ready for that. 

It’s no secret that the autism rate is rising, but I think the public’s been kept in the dark about it and about how challenging autism is. 

 

I’d love for more people to understand that the autism my son lives is different than what is shown on air.  I think it would help.  It would help him—people would see him in a new light and want to help him.  It would help us—people may not be so quick to judge.  And it would help the public—they might then realize just how severe this disorder can be.   

My son is lower functioning.  The autism is severe.  He is non-verbal.  He suffers from seizures.  He needs assistance to eat, to bathe, and to use the toilet.  He’s in 7^th grade and is still in diapers.  Our friends and family understand how great his needs are, but I fear that much of the public has yet to catch up.  Catching up is hard to do when the autism rate is downplayed on the news.  They can’t catch up when autism is depicted on popular television shows and movies with mostly highly intelligent and verbal characters.  The public cannot know the autism reality that my son and so many others like him live if that side of autism is not talked about out in the open. 

Saying No to the Flu Shot

By Cathy Jameson

Last week, my son received a phone call.  Ronan is non-verbal and couldn’t answer the call himself,  I spoke on his behalf as I have done for years now.  I tried to speak on his behalf when the phone rang again.  But I was not given the option. 

“This is Care Line.  We’d like to speak to the parent or guardian of Ronan Jameson.  If you are the parent or guardian of Ronan Jameson, please press 1.”

1

I hung up after hearing the next prompt.

“You may be aware that flu season is just around the corner.  We’re calling you today to share some life-saving information, but first, we need to know if Ronan Jameson has had his flu shot this year.  If Ronan has had his flu shot, please press 1.  If he has not had a flu shot, please press 2.”

I wanted more options.   But was given only two. 

Bye-bye.

I don’t usually hang up on people.  I’ve never hung up on anyone from Care Line (not the real name) because they have been helpful in the past.  They’re available to me 24 hours a day and 7 days a week.  I receive immediate guidance from someone on their medical staff.  They provide support and never judgement.  One staff member in particular has been extremely helpful.  She and I have spoken several times over the last few years.  She knows Ronan’s extensive medical history to include the reactions he had from vaccines.  She also knows my opinion about vaccines.  But each year around this time, she’s asked to discuss the flu shot with her caseload. So each year around this time, we “discuss” it by me once again politely declining the shot before she has a chance to read whatever statement that Care Line has drafted her to read. 

When Autism Doesn’t Speak

By Cathy Jameson

On a rather busy morning last week, the phone rang.  As I reached for it, I cleared my throat and said, “Hello?”

“Good morning.  May I please speak to Ronan Jameson?”

I hesitated and was able only able to utter, “Uh…”

I immediately felt uneasy and somewhat annoyed.  Most everyone who calls the house knows that Ronan cannot speak.  Who was this person was and why did she need to talk to my non-verbal son? 

I politely asked, “Who’s calling, please?” 

“This is Cindy.  I’m calling from the diaper service company.”

“Oh.” I said.  Deciding whether to put Ronan on the phone or not, I glanced to where he was.  Sitting on the couch with iPad in hand, his favorite movie playing on the DVD player, and breakfast just served on the table behind him—a gluten-free feast fit for a king—I decided not to put Ronan on the phone.  Had it been a telemarketer, I may have said, “Sure.  And good luck!” before passing the phone to the boy who lost his speech several years ago.   

Turning away from Ronan, I told Cindy, “Well, Ronan can’t talk.  I’m his Mom…what is it you need?”

Cindy stammered.  My response must have caught her off guard.  She said, “Well, let me leave a note in the file that we should talk to you instead.” 

I could hear her typing as she tried to regain her thoughts.  She was calling about the next shipment date but had gotten so flustered.  I took the call and her oversight it in stride but wondered if Cindy could tell that I was faking a smile while waiting for her to proceed with the call. 

Other representatives have always asked for me directly, but I did not protest her adding that Ronan can’t talk to his file.  Lack of typical speech is something worth noting.  It may have been news to Cindy, but it’s something we have been addressing for quite some time.  Sign language, flash cards, labeling everything in the house, narrating every action, emotion, and item Ronan sees, smells or touches, we flooded Ronan with words as soon as he went silent.  Despite our efforts, though, Ronan hasn’t regained speech. 

October is National Vaccine Injury Month: Five Things You Can Do

By Cathy Jameson

Vaccine injury happens.  It does not discriminate.  It can affect the young, the old, and the healthy.  Sadly, it isn’t as rare as we’re lead to believe.  If you haven’t had the misfortune of being injured by a vaccine, count yourself blessed.  My son wasn’t so fortunate.

When I learned that my son was injured by his vaccine, I found very limited information on what to do next.  In my quest to learn more, I discovered some important things.  I’d like to share some of those ideas with you today.

1 – If you’re considering opting for vaccines, read about them.  Become as fully informed about them as you can.  If it’s for you, look at the adult vaccine schedule.  If it’s for your child, you’ll want to check out the childhood schedule.  Both can be found on the Center for Disease Control and Prevention website.  Take time to know the dosage(s) recommended, the timing of the dosage(s), the ingredients of each vaccine, the side effects of each vaccine, and the injuries that the government recognizes.