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Cat’s 2018 Autism Action Month Playlist

Music MotivatesBy Cathy Jameson

Music is as much a part of me as writing is.  I love to write, and I love to listen to music.  Both have brought me comfort.  Both have gotten me through tough times.  Every few months, I like to add a song at the end of one of my Sunday posts here.  The song has been picked because it usually compliments my thoughts.  But sometimes, it’s the lyrics of a song that has actually triggered the writing.  In the past, I’ve included songs from all sorts of artists.  From hard rock and alt rock to everything in between, I’m always happy to share a tune that’s inspired me. 

A few years ago when April turned blue, I started sharing what I was specifically listening to during that month which many of us would rather skip over.  I turned off the news and turned up the volume of the music I was listening to.  Not wanting to celebrate or embrace any part of autism or what causes it those 30 days, I drowned myself in music so as not to get caught up on the blue washing going on around me.  Some songs I listened to were happy songs that made me dance.  Other songs came with water works.  With even more awareness going on this year than tangible action that some families desperately need, a new playlist is needed.  In no particular order, here are the songs I’m listening to now. 

Enjoy! 

Danger Zone – I had to laugh when I heard this the other day.  This song!  Oh golly, it’s cheesy, but how many of us willingly enter “the danger zone” of debating vaccines online when we log into our social media accounts?  So many of us!  I don’t purposely log in looking to take a troll down, but I will politely chime in when I see misinformation being shared.  I will especially share my two cents when I have time and energy if the other side starts pontificating propaganda or disrespecting a parent’s decision.  Mind you, I know I don’t have to say anything, but some days I do choose to engage.  Knowing I may not change anyone’s mind, I tiptoe into the danger zone very carefully. 

https://www.youtube.com/watch?v=yK0P1Bk8Cx4

Get the Mercury Out – This song popped up on my newsfeed a week ago.  I couldn’t have asked for a more perfect song!  I’d shared it on Facebook quite a few times several years ago and always got good feedback.  The best comments came from the moms who were on the fence about vaccines.  Knowing they “should probably look them up” but were unsure of where to start their research, posting this song offered the opportunity to drop some resources, websites, and truth bombs in a private message later.  The beat’s good, the message is great.  Go ahead, and give it a listen.  I think you’ll like it.  (P.S. I know it’s not just mercury that’s gotta go…I’d be okay if other ingredients were also taken out…or if entire vaccine program did a disappearing act, too.)   

https://www.youtube.com/watch?v=mXDVOG-EHgI

Everybody Knows – So what does everybody know?  Everybody knows that vaccines are safe and that autism cannot be caused by vaccines.  Duh.  But, wait!  Some of us disagree with that.  Everybody should know that vaccines, like all pharmaceutical products, come with risks and that they don’t always work.  But they don’t.  Not everybody knows yet which is why some of us choose to speak up.  We must!  Until everybody knows the whole truth, we will keep talking, sharing, blogging, speaking, and writing about vaccines and autism and the link between them.    

https://www.youtube.com/watch?v=RaJAxdGeZ4E

Lose Yourself – Being the parent of a special needs child can be all sorts of things.  It can be rewarding.  It can be thrilling.  It can also be frightening.  One day can be filled with one emotion, and the next with an entirely different one.  Depending on the situation, we may see multiple emotions and all at once!  It can be incredibly overwhelming to be the Mom or the Dad, especially if you have other children.  Moms, Dads, be good to you.  It is so hard to do sometimes, I know, but make sure you are taking care of you, too.  When the good days are good, life is awesome.  Focus on that because bad days can quickly bring us down a deep, dark hole.  Just promise me that wherever you are on this journey, don’t lose yourself in the process.  (*little bit language in this Eminem song…but that signing the young woman does – wow.  Check out all that ASL!)

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

This Is Me – I heard this song for the first time last week.  Minus the beard, I couldn’t help think, this is me!  This is many of my friends, too.  When it comes to defending our beliefs, we are no stranger to insults.  Sharp words cut us down, but we are brave, strong and absolutely unapologetic for who we are.  We believe something that society wishes we didn’t:  that our kids were harmed.  Guess what?  They were!  Some of our kids are still hurting.  We march to a new beat because of what happened to them and to us.  It’s not a life we ever thought we’d live.  It’s not a fight we thought we’d have to fight.  But that fight, that resolve, that intense drive to help our children has turned us into who we are.  Who are we?  Brave, unapologetic, and strong.  This is me!! 

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

Continue reading "Cat’s 2018 Autism Action Month Playlist" »


Speaking in Pictures

by Cathy Jameson

I’m tired. I’m frustrated. I’m done with the media. Some days, I want to walk away. I think other parents feel the same. I can speak for other parents out there who feel the same way. They’re tired. They’re frustrated. They’re done with the media. They may want to walk away, too. But, the public is still being told to embrace and celebrate autism while also being told to ignore what parents of children with autism, like us, are saying.

For some of us, vaccines had something to do with our child’s autism diagnosis. Instead of listening to us for advice, the public is told to tune us out. Some do. And that’s their right. It’s a shame, though, especially this month with all the blue-washing that’s going on.

Sdds
Photo credit: Karen Fuller

With as much information people have access to compared to when a lot of us parents started out, you’d think fewer children would be falling onto the spectrum. The exact opposite is happening. The more we’ve been ignored, the higher that autism rate rises. The higher other childhood disorders rise as well. What can we old timers do? Share more? Talk more? Write more? We’ve covered every single topic out there already!

I’ve already repeated myself a ton of times in writing, but I’m not ready to call it quits on this advocacy thing. So this week, I thought that I’d speak to other parents in pictures.

Curious?

Keep scrolling.

Unless otherwise stated, all images were from a google, twitter, or facebook photo search. Some photos show where they originated. Others do not. If we’ve shared one of yours and you want proper credit, please let us know.

I can’t say this enough, but young mamas and papas, please…

A

That’s because…

Z

Forced vaccines right here in the good ol’ US of A? Yep. That’s happening.

If you don’t know your rights, or if you’re okay with the CDC’s schedule, take note of the possible path you/your child could be walking when you stick to that vaccine schedule:

X

And how many vaccines is your little bundle ‘due’ to receive? Here’s a quick comparison using 2016 https://www.learntherisk.org/ stats:

Ss

What if it was you, the adult, who was being told you needed all those shots? Ever think about that?

Cc

It’s worth thinking about and asking about. I know it can be intimidating to ask questions, especially after…

F

It can be awkward, but it’s okay to know more. It’s also okay to to look up the information on your own. Your health and your child’s health is worth it. Even if you sound like a crazy person when you share what you’ve learned.

W

Honestly, I’d rather be crazy than ill informed, especially when it comes to knowing what to do for my child.

Speaking of being informed, here’s one way to do it. Read the vaccine package inserts, not just the 1 pager that your doctor or nurse tells you to read:

Dw

That’s because…

Y

The CDC even states that…

R

Too many parents learned that the hard way and later realized that …

   Ee

Which is why we want to be excited for you when you make announcements that a new baby is on the way, but this is how some of us feel instead:

Wy

Really.

We want to be excited, but new mamas are being told to ignore their instincts, to trust corporations, to put their faith in man-made products and to listen to paid pharma spokesmen instead. Don’t believe me? Check out what your AAP is saying about one of the most natural acts ever:

Uy

Breastfeeding isn’t natural? Um, yeah it is.

But there’s no money in that, so groups like the AAP, the CDC, and the FDA are constantly trying to remind us that…

Fear

It’s mind blowing what we’re told to believe. Focus should be back on the individual. In this case, the child…

Jh

You decide what goes in and on your child’s body. You get to pick what he eats, what she drinks, what hair care and hygiene products he needs, and which vaccines she will get.

That last product, which comes with no money-back guarantee, deserves as much research time as your baby’s crib, car seat and which type of paint you’re going to put in the nursery. Should you opt for vaccines, just remember that…

Kj

Nor can you sue the government should that decision go wrong…

Kj

And for those who poo poo parents’ decisions to opt out of vaccines or who want to blame disease on the unvaccinated, please remember that…

Youcant

Instead of questioning me, I have a question for you…

Whywould

Some of us come at vaccines at a different angle. Those of us whose child suffered greatly post vaccination were with the pro-vaccine crowd at one time. Lots of pro-vaxxers tend to forget that. At one point, we were with you 100%. But when our child was left with a host of medical problems, to include autism, our lives were flipped upside down and we were forced to rethink everything we were taught, told, and believed. That’s shaped me into the person I am today.

Who am I?

Well, besides being just an old, tired mom speaking in pictures this week…

Iamnot

Cathy Jameson is a Contributing Editor for Age of Autism.


A Series of Unfortunate (Autism) Events

A-series-of-unfortunate-events-teaserBy Cathy Jameson

I haven’t gotten much done while the kids have been home on Easter break this week.  Always hoping I’d be able to catch up or finish at least one project while we’re home and not running all over town, other things have kept all of us busy.  With the end of the week approaching, I hadn’t yet had a chance to brainstorm anything for today’s Sunday post.  So, while we sat at the orthodontist’s office late Thursday afternoon, I asked the kids for some help.  

What’s inspired you? 

What’s been floating through your minds this week? 

What do you think people want to read about this weekend?

Ronan’s younger brother said, “Oh, you can tell everyone that we’re watching all the new A Series of Unfortunate Events shows.  Remember how you made us wait until after Good Friday to watch the new season?” 

Smiling, I said, “I do remember that, and I’m glad you took time on Good Friday to be quiet and reflective instead of watching TV all day.”  Lemony

Willem continued, “Yeah, but then, we binged the entire second season Saturday and Sunday!”

Smiling again, I laughed and said, “You did.  You’ve also devoured reading and rereading almost every single one of the books again this week, too!  But you know what, as much as you like it, some of the readers here may not know about the show or the books it’s based on.”

Thinking, Willem responded, “Well, we could tell them about some unfortunate autism events that we and Ronan have gone through.  How about that?” 

“My darling, I think you’re onto something,” I proudly stated.

“Plus,” one of the other kids chimed in, “It’ll help people know that we need than just more awareness this month.  Awareness is not going to make autism any better in our house.  It just isn’t.”

I nodded and said, “Right you are.”

“So, what unfortunate events do you remember, ones that made you frustrated?  Lots of people know that you kids are super kind and caring, but that’s because I love to highlight those moments.  I’ve shared that things can be really hard for me as a mom, but I don’t always include how hard it can be on you guys.”

Lowering his head, Willem quietly said, “You could tell them about the time that Ronan came to breakfast naked.” 

“You mean like he did this morning?” I asked. 

Giggling, I said, “The first time was kind of funny.  That’s because he hadn’t yet hit puberty.  But the latest time, like this morning when he was just wearing socks and his headphones.  Yeah, it wasn’t so funny.” 

“Mom, it was totally embarrassing.”

“I know, honey.  I was actually embarrassed, too,” I admitted.

Continue reading "A Series of Unfortunate (Autism) Events" »


Autism At The Foot of the Cross

Easter angelBy Cathy Jameson

I know that our readers come from many different backgrounds – both religiously and politically, but today, today is a day that Christians around the world celebrate new life, new hope, and a new beginning.  It’s Easter, and I’d like to take time today to reflect on why it’s a special time of year for my family. 

My kids are still young enough to want Easter egg hunts.  After Mass, my youngest is planning on spending the entire day in an old bunny costume she’s worn for Halloween.  But first, before the candy and the toys, we celebrate the holiness that comes with this feast day.  In order to do that, the kids start to quiet down.  They actually started to do that a few days ago.  Reflecting each day on what Jesus was doing this week thousands of years ago, they imagined Him in the upper room on Thursday evening and in the garden on Thursday night.  They imagined Him carrying the cross Friday morning.  Then, they remembered Jesus being nailed to the cross at noon on Friday.  From noon – 3pm on Friday, they watched The Passion.  I didn’t direct the kids to do any of this, so it was quite impressive that they encouraged each other to be so quiet, thoughtful, and reflective! 

Watching them prep like they did, and hearing them talking about the crucifixion, got me thinking about an expression:  Bring it to the foot of the cross.  You may have heard that before.  Christians will sometimes say it to a friend during times of trouble.  Confiding that something is wrong, they’re told to take the problem to the foot of the cross:  Don’t go it alone, friend.  Bring it to God.  He’ll help.  I have been telling myself more and more to remember to take my troubles, my worries, and my fears to the foot of the cross.  

CJ easter 1

The older Ronan gets, the more worries I have.  I shouldn’t worry as much as I do because, most of the time, problems we’ve had have worked themselves out.  But on the days where I find that I can’t see beyond what’s right in front of me, I become overwhelmed and will mentally fall in a heap.  When that happens, that’s where you’ll find me calling out for help.   

Like when Ronan’s pricey medication was no longer covered under his insurance plan:  Lord, this is so hard! 

Like when Ronan started having grand mal seizures:  God, what is happening?

Like when I’m just so tired and have no energy left for anyone:  Jesus, please help me. 

Pausing, reflecting, asking for help – it’s not an uncommon practice for anyone to do that.  In fact, it’s one thing that all people can do no matter what their religious background is. 

Last week, after a few tough weeks that had finally turned around for the better, I started to think about times when we, Ronan’s family, could be at the foot of the cross.  Was it when I had to tie Ronan’s shoe for the millionth time?

CJ 2 easter

Or when brother was asked to read the same lines from one of Ronan’s books out loud all afternoon?

Continue reading "Autism At The Foot of the Cross" »


Spring Cleaning Special Needs Files

Retro wife cleans dad in backgroundBy Cathy Jameson

The kids had a snow day last week.  While they usually do better with a routine, I will always welcome an alarm-clock free day in the middle of the week.  With no need for any of us to leave the house, I wondered what I could do with the oodles of hours I had in front of me.  I could catch up on bills and emails.  I could make a double batch of gluten-free pancakes for Ronan.  Or I could clean out my closet.  Since it had been a while since I went through my closet, I decided to start some spring cleaning there.  Tossing aside clothing I didn't care for or fit it into anymore, by lunchtime I had a nice stash of giveaways to bring to the thrift shop.  I had half the day still ahead of me, so I decided to deep clean my closet.  That meant pulling out some storage bins I'd stashed in a dark corner under some dresses.  On the floor, hidden behind some full-length gowns I have, the bins were filled with old IEP notes, copies of old medical records, and countless years’ worth of old EOBs.  Only I knew about those papers, and for years, I let them bother me.  

I know I should've chucked much of what was in those storage bins a long time ago, but for several reasons I’d saved every single piece of paper in them.  I knew I had a big job ahead of me, so I lugged everything to the dining room to start to go through it.  Some documents were originals while others were copies.  The earliest reports went back to 2001 and to my first pregnancy.  All my life, I couldn’t wait to be a mom.  When I saw my old medical record, I was whisked back to happy memories.  With that ‘textbook’ pregnancy and a healthy baby resulting, I was as equally excited when we learned that child number 2 was on the way.  As I continued to go through each file folder, I was fast-forwarded in time.  Files related to Ronan were now at my fingertips.  My emotions changed. 

In that next stack, I came across handwritten notes mixed in with therapy reports from Ronan’s preschool days.  I found food diaries I'd kept when Ronan was being seen at a feeding clinic.  I found emails I’d printed out from other moms.  Some were encouraging, Cat, you can do this!  Others were littered with terms I’d yet to fully comprehend – Look up the Omnibus, vaccine injury tables, and mitochondrial disease.  Reading through some of those pages was hard.  I knew so little back then.  What I did know at the time, that my once healthy child now needed intensive care, didn’t make any sense. CJ vax docs

Some days, it still doesn’t make sense.

The more Ronan-related papers I found, the slower I started to sort.  Therapy suggestions, educational goals, medical emergencies, and outdated treatments plans brought me back.  They brought me back to a very dark place, but I continued.  One page at a time.  One painful memory at a time.  I read everything.  It was not easy, but if I was going to get this spring cleaning job done right, I needed to go through each page I’d saved.  After reading each page, I then needed to decide something:  keep it, recycle it, or toss it. 

Even though some of the paperwork brought back memories that are now part of an unfortunate reality, I decided to save several forms and statements.  My save pile was small, but later, something in it would become quite significant.  If I decided not to save the paper, I recycled what didn’t have any identifying information on it and created a pile of things to be shredded. 

Another hour.  Another file.  Another stack to read.  As the day wore on, I was happy to see my shred pile growing.  Toward the end of the day, I pulled out a file that was filled strictly with medical papers.  That file contained pharmacy print outs and medical encounter reports.  I’d stapled the reports to the accompanying Explanation of Benefits (EOB) from our old insurance company.  Save, recycle, toss.  Save, recycle, toss.  I’d gotten into a groove, but I then cringed.  I saw the term "Preventative" on one of Ronan’s EOBs.  Next to it was a dollar amount.  $102.42.  If I could get a refund on those vaccines, I would. 

Continue reading "Spring Cleaning Special Needs Files" »


Speak Truth, a Follow up to When the Siblings Speak

 

Sschool House Rock billBy Cathy Jameson

Groups rights in this case would be too great of a risk.

That was the feedback that my daughter’s proposed bill received. After Fiona submitted the mock bill, which aimed to secure a student’s right to an education as well as guarantee the right to employment, she wasn't terribly shocked at the response.  Some adults have yet to realize how important it is to protect their personal health care rights.  To ask a bunch of teenagers to fully understand and vote on a topic she’s spent years supporting was a pretty steep task.

Maybe these other students haven't experienced what Fiona has when it comes to vaccines.  We're both very grateful for that, but the other teens’ skewed thought - that the greater good is more important than the rights of an actual individual - does no one any good.  I asked Fiona about the mock bill process and what she thinks she would’ve done differently if she ever had a similar assignment for her government class.  Here was our conversation:

After you turned in your bill, what came next?  

My classmates’ bills were randomly assigned to another high school government class in the US.  That other class read through each bill and participated in a mock committee debate.  The bills submitted could either be passed, amended, or rejected.  If a bill was rejected, like mine was, you couldn’t make any changes.  It basically died in committee.

Did any of your classmates' bills make any progress?  If so, which ones? 

Yes.  Many of the ones that went farther than mine were about environmental issues, alternatives for energy, and gun control. 

How long did it take for your bill to get shot down?  

It was about a week and half after I submitted it.  That doesn’t mean they debated for that long.  That would’ve been nice if they did because that would make me think that they were really into debating this issue.  It’s an important issue, and these other students are going to have to consider vaccines in the future, not just for themselves but if they ever have kids, too.

Did you expect it to be rejected by the committee?  

Continue reading "Speak Truth, a Follow up to When the Siblings Speak" »


Coordinated Care

What+is+Diastat+Diastat+is+a+gel+form+of+Diazepam
By Cathy Jameson

A new care coordinator was assigned to Ronan a few weeks ago.  Wanting to meet us so she could explain her role and how her company can assist families like ours, I really wasn’t looking forward to meeting her.  She’s straight out of mainstream medicine, an area of medicine that doesn’t usually go out of their way for moms like me.  Moms like me question, doubt, fear, and don’t appreciate everything being offered.  What they say is preventative really isn’t.  What mainstream med says is safe and effective really hasn’t been.  What they say is mandatory really shouldn’t be.  Feeling apprehensive, but knowing that this meet up was an inevitability because of the type of program Ronan was in, I made plans for us to get together on Monday of last week.  

During the meeting, I believe that I gave her enough information to satisfy her questions.  Ronan has this diagnosis and that diagnosis.  He uses this equipment and is on that prescription.  We see this doctor, that doctor and those therapists over there.  He requires this amount of assistance and that amount of support.  Getting more personal, I was able to share that oh, yes, he is well taken care of and well loved.  He enjoys watching movies, playing Wii, and oh...no, he did not get this year’s flu shot or that pneumonia vaccine...but thanks for asking!  

Waiting for the next round of questions, I watched the young nurse fill out Ronan’s forms.  Checking this box, crossing out that wording, circling this option and x-ing out that answer, she remained silent.  I did, too.  She didn’t get to know everything.  Part of being the kind of mom mainstream medicine tends to loathe,  I’ve learned when to speak.  I’ve also learned when to shut up and just listen.  I don’t always like to do that, but it’s part of what moms like me have had to do.    

An hour had passed.  The last part of the meeting with the care coordinator was talking about and making goals.  Goals?  Medical goals?  In all the years Ronan’s been seen, evaluated, and treated, no medical person has ever asked me about making medical goals for Ronan.  Even so, I blurted out two as quickly as she’d asked:   

#1 To make the seizures stop

#2 To restore Ronan’s speech

Without making a comment, or showing any emotion, she wrote down what I had said.  Then, I waited.  I waited for some advice.  

But, I got none in reply.  

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Autism’s Caregivers

Family StoryBy the Jameson Children

We heard about a doctor who recently made some hurtful comments.  He insulted parents who are “anti-vaccine”.  He said that those parents hate their kids. What an absurd and unprofessional thing to say!  Sadly, we think that doctor really, really believes that moms and dads, like our mom and dad, hate their kid. 

If mom hated being Ronan’s mom, she wouldn’t spend all of her time with him.  But she does.

If mom hated Ronan, she wouldn’t spend thousands of dollars on his therapy.  But she does.

If dad hated Ronan like that doctor says dad does, he wouldn’t take Ronan out on Daddy dates to his favorite restaurant.  But he does. 

If dad hated being Ronan’s dad, he wouldn’t get up in the middle of the night to help Ronan get back to sleep.  But he does. 

If dad hated Ronan, he wouldn’t work hard every single day, and also work two jobs, to make sure Ronan gets the care he needs now and in the future.  But he does.  CJ palyground 1

Our parents do not hate our brother.  They love him very much!  You can see that love in everything they do for him.  You can feel that when you watch them helping him.  They help him all of the time, I mean, Allllll of the time.  Parents who hate their kids don’t give them healthy, organic foods.  They won’t make sure their kids get their medicine.  Our parents do all of that even though they’re tired, and it costs a lot. 

That doctor made a false claim and he did it in public in front of other people.  Not only that, someone offered to print his rude words.  Now more people can know what he said.  That could be a good thing, we guess, because then more people will see that he’s not exactly a kind, caring doctor.  We know a few kinds of doctors, and you know what, they like that our parents work as hard as they do!  Some of the nurses say that Ronan is their favorite patient.  They also say to mom, “Mom, you know him best.  Tell us how we can help you.”  That’s pretty awesome.  That’s how doctors and nurses are supposed to be, nice and caring.  We’d never want Ronan to be under that other doctor’s care. 

Since he’s in a position of some kind of authority, some of the people may think that other doctor is important and will probably believe him.  If he could just see what we see.  Our mom and dad want only the best and will do whatever they can for Ronan.  Ronan can’t talk or take care of himself completely yet, but mom and dad make sure he’s okay.  They make sure he’s happy.  They protect him also.  They’ll protect him from doctors like that one who wasn’t nice to moms and dads.

Continue reading "Autism’s Caregivers" »


Best of: Break My Stride

StrideNote: Cathy has the weekend off. She wrote this post this time of year in 2014. 

By Cathy Jameson

All I wanted to do on Thursday was vacuum.  At 10pm, as I made my way to bed, I glanced over at the vacuum and shook my head.  There is was.  Sitting in the same spot.  Untouched.  All day.  I hung my head and thought, Geez. Why can’t I get anything done around here?  Trudging the rest of the way to my bedroom, I added ‘VACUUM THE HOUSE’ to my list of things to do Friday. 

When I write my To Do lists, they tend to be a mile long.  I give myself an entire week to accomplish the tasks though.  Returning phone calls, scheduling appointments, sorting through paperwork and getting to the housework can’t be done in one day around here anyway.  With Ronan’s school and therapy schedule, and with juggling my other kids’ schedules, I’m on the go and out of the house more often than not.  Giving myself the entire week to check things off the list is more doable.  I can plan better and can usually get everything done.  This week, knowing we’d be hunkered down all day Thursday because of a winter storm, I looked forward to being home all day and to crossing things off my list.  That included vacuuming. 

But it didn’t happen.  And I was hard on myself for not getting it done. 

Dust bunnies and crumb bits under the table reminded me that my floors were screaming to be cleaned.  I was upset at myself for letting something so trivial bring me down.  But it was the one thing I wanted to do.  Instead of being able to look at the day as a success and remembering what I had gotten done, I only saw what I didn’t do. 

Midway through beating myself up about not getting this chore done, I stopped and laughed.  I had made a phone call earlier in the day (which was on my list of things to do) to my parents.  The topic:  me focusing on and worrying about what Ronan can’t do; not on what he can. 

More often than not, when I see what Ronan isn’t doing, I stumble and fall landing in a heap of tears as I go down.  That happened around the same time I could have been vacuuming on Thursday but didn’t.  It happened when I distracted myself choosing to read a story about a boy who’d recovered from autism.  It happened when I also beat myself up for not being able to provide Ronan with what this other family can provide:  an independent future. 

Continue reading "Best of: Break My Stride" »


When the Siblings Speak

Sister and brotherBy Cathy Jameson

Ronan’s siblings tolerate quite a bit from their brother, but they rarely ever complain about it.  They could – the noise he makes when he gets overly excited is ear piercing, the attention he needs is constant, and the frequent rearranging of their schedule because of his needs gets tiring.  It can be heartbreaking for them.  It can be heartbreaking for me as well. 

Being able to live through what they have had to has made Ronan’s siblings stronger though.  It’s made them more sympathetic.  It’s made them more aware of issues other kids their ages are years away from being introduced to.  Knowing what they know and witnessing what they’ve witnessed has made them more vocal, too.  Ronan’s big sister has taken her sibling viewpoint to the classroom a few times already.  She did so again last week.

Fiona was assigned to write a bill for one of her classes.  She told me she could’ve picked from any number of topics but immediately knew which one she’d write about:  vaccines.  More specifically, she wanted to focus on vaccine choice.  I had no doubts that she’d put 100% effort into her work, but I asked her, “Are you sure?  Are you sure you want to go there?”  Other teachers know that Fiona’s younger brother’s health drastically declined post vaccination and have been very understanding.  I wasn’t sure if this teacher would also be.  I shouldn’t have worried.  My girl took the challenge and ran with it.  Before I could ask her again if she wanted to reconsider, she confidently replied, “Mom!  Don’t worry.  I’ve already got a lot done, and it’s not even due for a few weeks.” 

For the next few weeks, Fiona collected quite a bit of information.  Some of it was added directly to the bill while other data was entered on a worksheet and saved as a reference.  Because the topic of her bill is a topic we discuss regularly here at Age of Autism, I asked Fiona if I could share some of the information in today’s post.  Enthusiastically, she said yes. 

Topic:  Health and Safety

Purpose: To ensure that all students (preK-Post Baccalaureate) in any public, private, and/or charter schools, and all employees in the private and government sectors are guaranteed their right to an education and employment without regard to their vaccine status.

Benefits: the guarantee of educational rights and employment security

Effective:  immediately and indefinitely

Knowing that the bill she was asked to write could raise some eyebrows, Fiona offered comments.  She didn’t need to do that, but she found a section where she could include supportive information.  She wasn’t adding it wasn’t just to supply useful facts and figures but to educate others, especially those who have yet to experience negative side effects of vaccines like she has: 

This bill gives the people the opportunity to attend school and work without jeopardizing their personal or medical rights.  It does not take anything away.  It does the opposite - it protects citizens' rights and opportunities. 

Continue reading "When the Siblings Speak" »


All His Life

Then and nowBy Cathy Jameson

I don’t usually take him with me, but Ronan accompanied me to my doctor’s appointment last week.  Since he had been to this facility previously, I wasn’t worried that he’d have any problems going again.  The only struggle he’s had when he’s gone with me to my appointments is when I’ve had a blood draw.  When the tourniquet is tightened around my arm, the panicked look on Ronan’s face speaks volumes.  Not surprisingly, needles do a number on him.  His immediate physical response to bat the phlebotomist away from me isn’t necessary, but in his eyes, he’s protecting me.  I’m glad that he has that instinct.  Since I wouldn’t be having any blood draws at this appointment, I knew Ronan would be fine to join me.  Happily, he was. 

Since it was not the first time Ronan had gone with me to this clinic, the doctor knew a little bit about my son already.  He’d commented on the noise-cancelling headphones and asked about the signs he was using after meeting Ronan.  I gave a short answer, “He has regressive autism and is non-verbal.”  It wasn’t a complete answer, but it would do. 

Because he’d taken notice of how different Ronan was compared to my other children, when we went over my family medical history later I made sure to say that, to my knowledge, no other relative shares the same combination of medical conditions that plague Ronan.  That information made the doctor’s eyes widen a bit.  I was glad to see that response.  Sometimes that look is accompanied with a long pause which gives me enough time to add, ‘Yep, we saw him decline post-vaccination.  The vaccines ended up doing more harm than good.’  But this guy returned his focus back to me quicker than others have and continued with the next question on the intake form.  After all, it was my turn to be the patient, not Ronan’s. 

That initial meet up was months ago.  Months ago, I walked away deep in thought when I left the doctor’s office.  I did so again last week.  As with other appointments, both Ronan’s and my own, I had lots to think about.  This time though, I couldn’t shake something that the doctor had said.  What he’d said wasn’t about me or my health; it was about Ronan. 

The appointment that brought me back to his office last week was for a follow up.  A quick review of my previous tests and labs showed that things were looking good for me.  With nothing new to discuss except how to continue to keep myself healthy and out of the doctor’s office, the physician asked what changes I’d made.  I had taken a page from what had worked for Ronan and changed in my diet.  I told him that and getting better rest have done wonders for me these last few months.  Learning to say no to things – like the volunteering I’d been trying to squeeze in – gave me more time to rest and to eat better, and gave me energy to concentrate better on important, time-sensitive tasks that kept popping up.  Being as thorough as he could, which I appreciated, the doctor then went back and reviewed the symptoms that had brought me to him and made sure they were no longer a concern. 

While looking back through my chart to jog his memory, he asked me if I ever pinpointed when things started to bother me. 

Had you been in an accident?  No.

Had you changed anything in your living environment?  No.

Had you been under any stress?  I laughed. 

Continue reading "All His Life" »


Challenging Autism

Autism eye testBy Cathy Jameson

Last week, Ronan had an eye appointment at rather large medical facility.  We were going to a place where multiple specialties work under one roof.  That can be a blessing – providers have access to the main medical file and can look over other doctors’ notes to review current treatment plans and progress.  If any sort of collaboration needs to be done, communication to another specialist can happen quickly.  But, being in a large facility can have its drawbacks – instead of just a few patients, there are lots more patients, nurses, doctors, and medical stuff coming and going.  With that, there’s more sensory stimulation, waiting room time, and sometimes, an increase in frustration.  Just walking into a facility like the one we were going to could be a challenge for Ronan.  Knowing the types of tests he’d be asked to do that day would be also, so I did as much as I could ahead of time hoping things would run smoothly. 

Being unfamiliar with the location we were going, the first step, literally the one Ronan would take out of the car, could be hardest.  Happily, Ronan got out and then waltzed right into the building!  Curious about where we were and about everything he was seeing, Ronan took his time walking down the very long corridors to the clinic.  He pointed to words he recognized while we were in the elevator and also signed the ones he knew the sign to.  As we walked, he smiled and began to scroll through some of his favorite signs.  He does that to tell us he’s happy.  I smiled back at Ronan. 

Rounding the corner, my expression changed.  As I expected it would be, the waiting room was packed.  Oh, boy.  This could be a long day, I thought.  I was glad that I’d brought all sorts of Ronan-happy things (snacks, his favorite books, and an iPhone to watch favorite videos).  They would help keep Ronan distracted while we waited for his name to be called. 

While sitting and waiting after we’d been checked in, I began to feel apprehensive about the new provider assigned to Ronan’s case.  I’d learned that the doctor we were seeing was not the specialist I’d agreed to take Ronan to.  This doctor only knew Ronan on paper.  In order to get a better picture of what’s going on and why we were there, I’d need to offer a full history.  I began to mentally go over everything I wanted to say and ask him the new doc. 

With as many medical issues that Ronan has, I wanted to give as much relevant information as possible and prayed that what I said, and how I said it, would be respected.  My thoughts were interrupted after just a few minutes.

“Jameson.  Ronan?” a very young doctor called out. 

Making eye contact with him, I raised my hand and turned to Ronan.  “Hey, buddy.  That’s us.”

“Follow me, please,” the doctor said.

Since the doctor we’d been assigned was young, likely inexperienced with a child like mine, and would only be able to do so much before having to refer us to the head doctor, I walked into exam room 10 steps ahead of Ronan and quietly stated, “He’s non-verbal and has sensory issues.  Speak to him.  Tell him exactly what you’re going to do and why, and that should help.” 

Without replying to me, he turned to Ronan and said, “Hey, big guy!  Can you sit right here?” Ronan responded immediately and positively and got settled in the chair.   

Taking out some files I’d brought, I said, “Ronan signs.  It’s not straight up America Sign Language.  It’s more RSL…Ronan Sign Language, but if you need me to interpret anything, let me know.”  The doctor nodded his head, said he understood, and said, “You do what works.” 

Other people might have dismissed my attempt to help, but I felt myself begin to relax.  Still skeptical since he’d yet to begin the physical part of the exam, I watched the doctor for his next move. 

Continue reading "Challenging Autism" »


Overheard

Hand ropeBy Cathy Jameson

There I was minding my own business while waiting to check out at the grocery store last week.  Not wanting to engage with anyone or deal with anything besides what was on my To Do list, I tried to ignore everything around me.  That worked until I glanced behind me and saw that several employees from various departments of the store had gathered in the same spot.  One of the women, an older gal, smiled brightly as a fellow employee approached the group.  The employee, in her early 30s and not in uniform, joined the women’s conversation.  She’d brought her toddler in with her. Everyone beamed. 

After greeting each other, all eyes and smiles were directed to the child.  Snuggled into his mama, I couldn’t see him too well.  Giving them their privacy, I turned around and took more items out of my cart.  As the conveyor belt moved my food closer to the cashier, I reached back into the cart for more items.  Stealing a glance at the ladies, I heard them chit chatting about the store, other co-workers and the weather.  Before long, the conversation turned, and the ladies’ expressions changed.  I didn’t hear what the young mama had just said, but I could hear the older lady’s voice quite clearly as she reached for and rubbed the little boy’s knee. 

“Oh, poor thing!  You got your shots today.” 

As their smiles turned into frowns, chills went up my spine.

Looking away from the doting older woman, I could finally see the boy’s face.  His eyes were a tad puffy, and his nose needed to be wiped.  Staring back at his mom, I noted that he was able to make eye contact.  

‘Good,’ I thought, ‘….for now,’ I added. 

I shuddered then focused back on what I was doing.  Unloading the last few things from my cart, I shook my head.  Still curious, I glanced one more time at the child.  The ladies were smiling again trying to make him laugh.  One in particular, that older one, kept the conversation going. 

“How old is he now?”

“Two,” the mom replied, “It’s his birthday.”

“Oh, it’s today!  Happy birthday!” the older gal squealed. 

 ‘You mean Happy Shot Day!’ I said to myself.

Continue reading "Overheard" »


Best of: I Have Come to Realize

Sun burn handNote: Cathy is enjoying a weekend with her beautiful family.  We ran this post in May of 2013.

By Cathy Jameson

A few years ago, a friend tagged me in a note on Facebook called “I Have Come to Realize”.  Every sentence began “I have come to realize that...” and included about thirty random ideas.  My friend had filled in her realizations and asked that I copy/paste the note and offer my own.  It was a neat activity that had nothing to do with autism, so I quickly followed the directions.  Copying the outline, I filled in my answers and then shared the note with my friends. 

I’ve since deleted the note off of Facebook, but I saved the answers in my writing file.  I did this to capture my thoughts in that moment of time hoping to learn from them in the future.  I come across that file every now and then and always make time to reread it.  Some of the entries make me laugh while others give me an insight to the fears I had at the time.  Many of those revolved around Ronan.  Some of them are the same fears that I still have today. 

With those worries never too far from my thoughts, I experience mixed emotions when I open the file.  I feel trapped in that some things haven’t yet changed for the better.  I also feel a bit stronger knowing that I have at least admitted that I am afraid. 

From several years ago:

- I HAVE COME TO REALIZE that I have lost...a lot of time by researching instead of doing or just living.

- I HAVE COME TO REALIZE that when I get on Facebook...I escape to my past since I'm afraid of the future.

- I HAVE COME TO REALIZE that my friends...are more of a lifeline that I imagined.

- I HAVE COME TO REALIZE that this year...is one full of questioning but also of accepting.

- I HAVE COME TO REALIZE that I'm totally terrified...of many things now that I'm a Mom.

Continue reading "Best of: I Have Come to Realize" »


Special Needs Advocacy Ideas to Kickstart the New Year

Map to hope
By Cathy Jameson

Parents of special needs children play many roles.  Some roles come naturally to them while others take time to learn.  One role is being an advocate.  The more involved a parent becomes in their child’s education, in securing adequate health care, and in planning for the future, the more advocating they may tend to do.  It may take time to perfect, but being an advocate is important. 

The longer I advocate for my son, the more I learn.  The more people I get to meet, too.  Some of those people are fellow parents while others are just kind souls who want to help moms like me.  I’ve met more than a few kind souls on this journey.  They help inspire me to continue to work hard for my child.  I shared a few advocating ideas that I learned from others 2 years ago this week.  I thought about a few more to add for 2018. 

From being an armchair advocate to being the person willing to pound the pavement, there are tons of ways to advocate for kids with special needs.  Depending on your level of comfort, this short list of suggestions can be started as early as today.  And don’t think that these ideas are just for special parents.  Siblings, grandparents, teachers, therapists, neighbors – anyone can become an advocate! 

1 Join a mailing list – Autism Action Network and National Vaccine Information Center make it easy to be in the know.  Cruise their websites to learn what their missions are and to see how you can help. 

Ready to take it a step further?  Once you catch up on the latest news, consider contacting your representatives about issues that will affect special needs parents, like parental rights.  If an issue is near and dear to you, think about getting some facetime with your Rep.  Not comfortable speaking up yet?  Attend a legislative session, a town hall meeting, or a public forum.  Even if you don’t speak up, because speaking up can be nerve wracking, be present.  There is strength in numbers. 

2 Host a movie night – I am a movie documentary junkie.  I love to watch them because I love to learn!  I also love to share what I have discovered with others.  If you love to learn also, consider hosting a movie night with friends.  Invite the ones who have shown interest in what you’ve shared about your child, their autism, their vaccine injury, or about dietary changes or protocols you’ve used.  Think about inviting your skeptical friends, too.  Maybe hearing the information from a different source will open their mind and lead to new conversations.  Need some movie suggestions?  Here are just a few:  Trace Amounts, Greater Good, BoughtVaxxedForks Over Knives,  and Fed Up.

Ready to take it a step further?  Host a movie night at a local public library – reserve or rent one of their conference rooms.  Reach out to producers of the film and ask if you can do a short A and A via Skype before/after the event.  If you have the means, donate a copy of the movie to the library, the nearest university library, the special needs department in your district, or to the neighbor who needs a reminder that your child isn’t intentionally being difficult like they believe he or she is. 

Continue reading "Special Needs Advocacy Ideas to Kickstart the New Year" »


Live Through This

Champion fall out boyBy Cathy Jameson

“…if I can live through this…I can do anything…”

I heard a song a few months ago while driving around town running some errands.  It was still playing on the radio when I got to my destination.  Rocking out to it while sitting in my car in the Costco parking lot, I waited until the song ended before resuming my busy day.  Once it was over, I turned off the car and grabbed my shopping list.  Repeated the refrain as I walked into the store, I told myself, Don’t forget to look up the lyrics when you get home.  It would be a few hours before I’d make my way back home though.  When I finally got there, I completely forgot to look it up.  Last week in the midst of some other errands that had me running all over town, the song came on again.  I had just turned on the car.  Staying in the parking spot so I could listen to the lyrics, I rocked out to the song once again.  

…I’m calling you from the future

To let you know we made a mistake

And there’s a fog from the past

That’s giving me, giving me such a headache…


Golly, is that my life or what?  It isn’t every day, mind you, but I do feel like mistakes have been made.  Some people can look past mistakes, theirs and ones made by others.  They can let the past go, and I applaud them, but I will still sometimes struggle with the “I would have if I could have” thoughts that pop into my head.  They pop into my head when Ronan has another seizures, when he lashes out at his loving therapists, and when he pulls his sisters’ hair.  Those frustrating moments bring out the worst in Ronan.  They can bring out the worst in me and make me want to throw every positive thought I have out the window.    

…I got nothing but dreams inside

I got nothing but dreams…

 

Ahh, yes, those dreams.  Those dreams!  I believe in them, and I hope in them fully.  Dreams help me put one foot in front of the other.  They help me get out of whatever funk I have gotten myself into, too.  Falling into a funk - that happens, and it’s hard to get out of sometimes.  Most of the time the funk happens when I get a peek back at the past.  People have told me to stop thinking about the past and to move on.  They are usually people with much higher functioning children or people who have no children at all.  I don’t begrudge them for not understanding, but I also don’t give them too much of my time.  It is sometimes pointless to talk to them because they don’t have the same deep, emotional scars I have.  But I’d love to ask them how does one move on fully when the past lingers as much as it does in the present? 

Ronan never made it through certain stages. 

He never hit some major milestones. 

He hasn’t grown up like other typically developing kids have. 

His past included enjoying baby books, watching baby movies, and wearing diapers.  Presently, he still likes his old baby books, still likes baby movies, and still wears diapers.  The past never left.  It parked itself in our home, and on some days, it rules our house morning, noon, and night!  Believe me I’ve tried to not think about the past, but it’s right there in my face all day long.  I handle it by dreaming about the future and living as hopefully ever after as I can.  That’s because …I can do anything…

People ask me all of the time, Cat, how do you do it all?  Some days, I seriously don’t know, so I sheepishly reply, I just do what I have to do.  Ronan needs me.  He needs endless support.  I do what I can when I can.  That’s because I believe that Ronan can do anything.  If I think otherwise, I’ve set him up for failure.  This kid hasn’t failed anything!  Other people may have failed him, but he has soared.    

…If I can live through this…

Continue reading "Live Through This" »


Family First

Family StoryBy Cathy Jameson

Knowing how much work it takes to keep Ronan happy and safe, my sister's family is more than patient with us when we visit.  They are more than generous, too.  Before we arrive, they've stocked their shelves with safe food items for Ronan to eat because they understand that sore tummies are not easy to deal with.  Knowing he's a kid who's prone to wander, they promise to help keep an extra eye on the doors with us when he’s in the house.  Fully understanding that Ronan needs some quiet space, one of the cousins takes time to clean up his room for Ronan and offers to sleep on the floor in another bedroom.  It's a lot of work to host us, but we never feel like we've overstayed a welcome when we're at my sister's house.  

Overloaded with excitement, the siblings were beside themselves with joy when we began to pack our bags to travel to family for Christmas.  I was excited, too.  I was until a diaper exploded in my sister's washer.  If you've never experienced a full diaper exploding in a washer, consider yourself lucky.  

Having completely forgotten about it by the time I got to wash a very full load of linens Ronan had peed on in the middle of the night, I was embarrassed.  The gel beads from the diaper and the pull up he wears over the diaper each night were everywhere.  In his pajamas, all over the full-size afghan throw, and in his socks that I'd washed, it would take 45 minutes to find and remove every single bead.  Trying to find the positive after dealing with that mess, I told my sister she now had the cleanest washer in her neighborhood.  We laughed because what else can you do in a situation like that?  

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Autism Reflections and the Jesse Tree

The Jesse TreeBy Cathy Jameson

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

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

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

How true. 

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

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

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

Continue reading "Autism Reflections and the Jesse Tree" »


Good Lord

Sunday thoughtsBy Cathy Jameson

My son’s vaccine injury has kept me from believing in the system.  It’s also kept me from being grateful for pharmaceutical companies, especially ones that cannot be held responsible for damages their products cause.  So when I heard that a pharmaceutical company listened to the people and created something that the people wanted - and that we were being asked to thank them, my interest was piqued.  It stayed piqued when I learned that a morally acceptable vaccine, a vaccine that did not contain aborted fetal cell lines, was now on the market for consumers. 

I’ve written about how certain ingredients found in some vaccines go against my beliefs as a Catholic.  Aborted fetal cell lines?  In vaccines?  Yes.  That revelation was one of the first things that made me begin to question vaccines my children were scheduled to receive.  At the time, I was faithful to the schedule and hadn’t planned on deviating from it.  I can’t recall now who told me about the cell lines, but the more I started to read about the process the more horrified I became. 

I still have print outs of what I’d started to look up.  I still have emails between friends and a local doctor who shared the same concern that I did.  These other parents and I knew that we couldn’t opt for those vaccines.  But what could we do?  Our kids’ pediatricians were quick to tell us our children needed them.  Schools were even quicker to tell us young parents that our children needed those vaccines for school entry (which I later learned was not entirely true).  Some parents were beginning to delay their kids’ shots and others quietly opted out completely.  I respected their decision, but I was the one mom who planned to continue to take her children to their well-child visits religiously.  The problem of how to stay on schedule became a bigger problem though.  Determined to not veer from it, I remember doing everything I could to find vaccines not created with those cell lines.  I even called other pediatrician offices in other towns to ask which manufacturers they used.  Everyone used the ones we Catholics should not be using.  I was at a crossroads: give my kids the shots that go against my morals, or consider opting out.  I hadn’t planned on opting out, but I eventually had to.  In hindsight, I want to thank the Lord for that! 

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Sabotage

Talk to meBy Cathy Jameson

Ronan started speech therapy again.  We’d ditched it years ago after progress had plateaued.  That, and the onset of major transition issues Ronan had going into and out of the building, prevented him from gaining anything useful from his sessions.  He would get so frustrated.  His therapists and I would, too.  We all needed a break.  That break lasted over 2 years.  When I learned that a center we got to for other services was adding speech therapy, I thought it was time to explore it again.  Ronan’s six weeks into it now and is responding well. 

Since Ronan lost his voice post vaccination, I have been hell-bent on bringing it back.  He’s retained vocalizations, but the ability to say clear, concise words has never returned.  Before I got my hopes up too high this time going into speech therapy, I reminded myself it was actually Speech and Language Therapy.  It wasn’t just speech that he’d be working on.  He and his new therapists would be working on language skills as well. 

Language includes the study of what words mean, how to make new words, and how to use words together.  Ronan has that down pat but in a different form – words in print.  Ronan can identify words.  He can point to the sentence I’ve just read aloud.  He can type.  He can maneuver a computer keyboard and a tee-tiny keyboard on a small cell phone.  His sentence structure, syntax and punctuation skills are still rudimentary, but his message is always clear.  Just today, he typed (in a series of prompts) “Lock door ipad” on his voice output device indicating that he wanted me to open the door.  The door was closed.  Behind it was his iPad.  It needed to charge.  If he saw the iPad, he’d take it as soon as he saw that it had 1% battery power.  Since he was hoping to watch some Youtube videos, I wanted to charge it a little bit longer.  Ronan didn’t want to wait, but he did after I wrote my response, “The iPad is charging.  Play something else instead, please.”  Easily, I could’ve said that, but lately, he’s responding to directions and requests better when they are written. 

Ronan screens

After Ronan lost his voice, Ronan’s speech did not quickly come back like I’d always hoped and prayed that it would.  It still hasn’t.  So he found other ways to create meaningful communication opportunities with us.  Our new speech therapist saw that during the initial evaluation and was on the same page we were wanting to further develop those opportunities, especially with the voice output device.  At least I thought she was on board until she asked me to sabotage Ronan. 

Sabotage? 

Hearing that word didn’t conjure up a warm, fuzzy feeling.  I thought the exact opposite.  Sabotage was what an overbearing, oppressive tormentor uses on its victims.  And this is the approach this new gal wanted to use with my kid?  What an awful suggestion! 

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Walk On

Handicapped parkingBy Cathy Jameson

Ronan was a late walker.  At one point he’d had the ability to stand and cruise the furniture, but he started to lose his balance.  He started to lose his confidence.  He began to lose some of the gross motor skills he’d developed as well.  When we realized how delayed his physical development was becoming, we sought help.  Help included physical therapy, positive reinforcement, and lots of prayers.  After months and months of hard work, Ronan was able to walk all by himself. 

That happened one Sunday morning right before Mass.  My husband and I were in the courtyard holding hands with Ronan.  Ronan let go and walked into the sanctuary independently.  He walked through the entire church, the annex, the parish center and around the outside of the church, too.  With how confident he was, and with how much ground he covered, it was as if he’d never struggled with walking before.  I’ll never forget that day.  It was May 1st, 2005.  Because it was such a huge accomplishment, I celebrate it, even all these years later, like I would celebrate a birthday. 

Ronan doesn’t zoom all over the place like he did before.  He doesn’t climb things like he used to either.  Once a daredevil who knew absolutely no bounds, Ronan’s more content to sit and watch life go by.  When we have to go out somewhere, he will ask for assistance almost as soon as we get going.  He gets tired and his pace slows down considerably.  That can happen rather quickly.  Because he loses strength and stamina, and because of the other medical issues he has, when we go out of the house, we look for and park in handicap spots.  I don’t always use them, especially if there is a regular parking spot open close by, but I appreciate that they are available to us. 

For years, I fought getting a placard.  “There are other people worse off than us who need that parking spot more!” I’d argue.  A dear family member convinced me otherwise.  “Cat, the placard and that spot closest to entrance is not for you; it’s for Ronan.”  Humbly, I requested a handicap placard for Ronan at his next doctor’s appointment.  It was granted no questions asked. 

Most of the time, people who park near us are kind and generous with the space Ronan and I need to maneuver him out of the vehicle.  Other times, people stare.  I don’t let their ignorant stares bother me too much.  I have other things more pressing to worry about than what they think of me or him.  When we’re in the parking lot, my biggest worry is getting Ronan safely from the car to wherever it is we’re going (therapy clinic, store, school gym).  Everything and everyone else takes a backseat. 

A couple of weeks ago after picking up the kids from school, we pulled into a handicap spot closest to the crosswalk at the grocery store.  Ronan already had a full and physically taxing day, so I asked my girls to run into the store for me.  Fiona and Izzy immediately said they would while the rest of us waited in the car.  While my daughters were inside picking up the few items we needed, a man came out of the store with his grocery cart and groceries.  He loaded his stuff in his truck then walked across the road to the handicap spot directly in front of me.  Under my breath, I said, “No, no, no.  Don’t leave it there.  Walk it over, buddy.”

He did not walk the cart over.  Instead, he left it in the handicapped parking spot in front of us.  He was in no rush because instead of driving off, he stood outside his truck and smoked a cigarette.  I contemplated moving the cart.  The way he left it was in such a position that no one would be able to safely pull into the spot.

As I stewed, Fiona walked out of the store, I quickly called her and said, “Hey sweetie, see the cart in the spot in front of us?  Can you walk it over to the cart corral?”

Yep, she could.

And yep, she did.

With jaw dropped, the man, who was still standing outside his truck, watched my kid walk 3 short spots over and put the cart away.  Now, I know that some people don’t “wear” their special needs on them like others do (Ronan is a perfect example – he “looks so typical” until you know him and see that he’s got a lot going on), and this guy could’ve had some physical limitations that could’ve prevented him from putting that cart away.  But those limitations aside, he should never have plopped his cart in that handicapped spot or any regular spot for that matter.  There were other areas nearby that he could’ve placed it out of the way of traffic even without having to walk the 3 extra spots to the cart corral.

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The Failing Flu Shot. Got It? No, Thanks.

Did You educate Vaccinate
By Cathy Jameson

When I was growing up, we were taught four seasons:  spring, summer, autumn, winter.  Lasting 3 months each, they make up our year.  At some point in time, the medical and the advertising industry created a new season.  They call it the Flu Season.  Starting in October and lasting well into spring, a better term to use for those months of the year is Flu Shot Season. 

Even earlier, depending on where you live, this man-made season begins with signage.  Never advertising simple tips—like hand washing, avoiding contact with others while feeling under the weather, or covering sneezes—Flu Shot Season advertising goes into full force around the time that school begins.  Steadily increasing during the holidays, the advertising becomes more in-your-face.  So do the monetary incentives for flu shot consumers. Flu shot halloween

A quick internet search of “flu shot incentives” and “flu shot freebies” brings listing upon listing of how to cash in on free or reduced products.  How this is ethical is beyond me.  We’re not usually offered $5 off of groceries for other medical procedures, like for allergy testing or testicular cancer screenings; why, then, just for vaccines?  

Flu shot target

Flu shot sign images source: Google

No matter when, and no matter how many signs are placed or how many commercial spots are aired, the flu shot has, once again, received failing marks.  Straight from the CDC’s mouth, this year’s flu shot has been reported as ineffective.

Flu shot graphic

Image source: CDC

Even with that news, advertising continues.  It’s push, push, push that failed shot one more Flu Shot Season in a row.  If any of my children come home with academic scores similar to the yearly efficacy—or better said, the inefficacy—of the flu shot (“Adjusted Overall VE %” column), my eyebrows would be raised.  My patience would be worn thin.  My head would be spinning, and you know that there will be tons of questions – why is your average so low?  Did you miss class that day?  Were you goofing off?  Did you forget your book?  Notes?  To study?  My children know that they are responsible for their studies and that consequences follow low scores.  That doesn’t seem to be the case for the US vaccine program’s watchdogs. 

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Confessions of a Believer

Burn_candle_at_both_endsNote: This is a fabulous best of from our Cathy Jameson. Fall fell last weekend here in New England, when we turned back the clocks to early, dark afternoons. Thankfully, Cathy always provides light. From September, 2009.

By Cathy Jameson

With the season of fall right around the corner, I feel a sense of ominous cleansing. Shadows grow longer as the sun sets earlier. Crispy mornings greet me as I struggle to feel wide awake under my snuggly covers.  My older children begin a new academic year of learning and exploring while my son Ronan, who has a laundry list of special needs, makes tiny steps toward some progress.  Unfortunately, my positive outlook grows dimmer as the outside shadows begin to cast darkness through my living room windows. Why do I work so hard for the dream of bringing Ronan back to typical anything when the world immediately outside my front door gives little support toward his recovery? 

The very in-your-face swine flu “pandemic” is all over the mainstream media. It’s even made its way onto children’s television shows.  It’s across the nation and world with political leaders stepping up to the patriotic plate telling us apparent feeble-minded citizens to get this new vaccine to protect our country from the H1N1 flu.  How can one who has learned first-hand about negative reactions to vaccines feel anything but herded into an agenda that truthfully does not protect everyone?  The financial and political push with regard to the swine flu, the regular flu and that incredibly long list of childhood vaccines make me beg to differ when it comes to the current vaccine program.  When the many children who have been ill-fitted with vaccines and have succumb to adverse reactions (i.e., neurological delay, communication delay, gastroenterological problems) can receive the medical, educational, financial and emotional support they and their families needs, maybe I will be more open-minded to what the vaccine camps say.

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Beyond the Disability

Hope dandelionBy Cathy Jameson

We were at a children’s hospital last week for some testing.  Ronan had two appointments spaced several hours apart.  It was going to be a very long day for him.  It was going to be a very long one for me, too.  Despite that, I was actually looking forward to our day out.  We were catching up with one Ronan’s providers we met about a year ago.  Integral in getting some much-needed equipment and services for my son, I looked forward to hearing what else he might suggest I could, or should, be doing for Ronan.  Before that follow-up appointment though, Ronan was scheduled to see a new doctor.  He was also scheduled for some testing.  New people and new testing can make me nervous.  Understandably, they can make Ronan nervous, too. 

Ronan got through the first part of the day pretty really well.  Complimented for his patience and how he managed to deal with the intense sensory overload one of the tests caused him, the nurses and the doctors we encountered remained very positive and very patient-centered.  Speaking to Ronan, showing him the equipment they were going to use, and asking him for input knowing that he would not respond, they made Ronan as comfortable as they possibly could.  I was pleased.  Other families we saw coming in and out of the exam rooms that morning also looked pleased.  

Since we had about 2 hours before the afternoon appointment would begin, I thought we’d head over to the cafeteria to eat and rest.  But Ronan was already tired and the long walk to and from the cafeteria would do him in.  Finding a quiet area near the entrance of the clinic where he’d be seen next, I sat us down on a bench and took out the lunches I’d packed.  Ronan was happy to eat.  He was also happy to also have some time on his iPad. 

While we were eating lunch, a happy fellow walked past us.  Stopping when he saw Ronan, he struck up a conversation.  He noticed Ronan’s head phones and also the Minion Rush game Ronan was playing on the iPad.  I smiled.  The young fellow was verbal but was incredibly hard to understand.  His mom chimed in and told me a little about him – he’s in 8th grade and excited for high school where his big brother goes.  We talked about how big a transition that would be.  Commenting on Ronan’s head phones, I told the mom it was the best $11 we ever spent.  The boy laughed and said he liked them.  Then, he pointed to the game Ronan was playing.  Impressed with how well Ronan was doing, he offered a huge smile and lots of praise, “Yeah! Go! Did it!”  His mom translated everything else he would try to say to us. 

After a few minutes, they had to go.  As the boy turned toward the door, I thanked him for taking time to say hi to us.  He kept walking but was not done speaking.  This time, his mom didn’t have to tell me what his message was.  He’d already given Ronan 3 compliments, but he had one more he needed to share.  Already outside, he looked back at us and belted out, YOU’RE AWESOME!  I smiled and laughed a very happy laugh.  Down syndrome didn’t take any of this kid’s personality away.  If anything, it gave him more life.  What a treat for me to have been blessed by it. 

Because of his disabilities, that young boy, like Ronan, could potentially face life-long struggles.  Physical difficulties, emotional hardships, and other differences that typical children may never experience will be part of his life.  Those, coupled with the medical issues that brought him to the hospital that day, are his “normal”.  How that boy with Down syndrome choses to live with his normal will certainly help influence others around him, including his family.  His mom looked tired.  She did not have nearly the same pep in her step as her upbeat son did.  But she made sure to be present in the moments that were important to him, which included the few short minutes he stopped to chat with us. 

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Sidelined No More

Lonely childBy Cathy Jameson

The kids’ fall sports season just ended. With three kids on three different teams playing at three different venues, it’s made for a very busy, and sometimes overwhelming, few months.  Add in my husband’s busy work and travel schedule and there were days that I had no idea how I was going to get the kids, or me, everywhere we needed to be.  Also add in Ronan’s lack of interest in these sorts of events, and life turned into more of a juggling act than it already was. 

With the help of friends on the days when I had to be, but obviously couldn’t be, in three different directions, Ronan’s siblings were well taken care of.  Friends picked my kids up for me, they watched my kids’ matches for me, and they brought my kids back to me.  They knew that I couldn’t get to many of the away games and eased a huge burden for me by being there.  Friends were my eyes and ears, and I couldn’t be happier for their assistance. 

Thankfully, I made it to a lot of the kids’ home games this season.  More importantly, I made it to each of their final games last week.  Happily, Ronan joined me for two of them.  He did pretty well while he was there, too.  With lots of practice, Ronan’s gotten the kids’ sports routine down pat.  I can’t say that he looks forward to going to these outings like I do, but he tolerates them well enough so that I can actually watch and enjoy seeing my children compete.  It wasn’t like that in the beginning. 

Years ago, when Fiona was the first to take interest in sports, I couldn’t even pick up her up at the end of practice.  When it was time to get her, Ronan refused to get in the car.  He fought being buckled in.  He protesting the entire way there.  He protested the entire way back to the house as well.  At that time, my husband was gone more than he was home.  Realizing how difficult a simple pick up was for me, a friend offered to drive Fiona home.  She lived on the opposite end of town.  To come all the way to my house added 40 minutes to an already late evening.  She brought Fiona home not just once but after almost every single practice.  Humbled by her generosity, I longed to help pay it forward to help another family in a similar situation.  That wouldn’t happen for a while.  If memory serves me correctly, I only saw one of Fiona’s games that particular season. 

I continued to rely on this mom, as well as other team moms that I had yet to meet, to get Fiona home or to her games for the next two years.  It wasn’t until well into Fiona’s third season did Ronan finally learn how to be a spectator in the stands.  It was slow going, but by the time the end-of-season tournament came around, Ronan could sit in the stands like the rest of us could. 

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Back to the Future With (or Without) Autism

1981_Delorean_DMC12By Cathy Jameson

Several weeks ago, I made an appointment for October 21st.  So that I wouldn’t forget that appointment, I opened the calendar app on my phone to enter the information.  I could see that I had another event scheduled for that day already.  I thought, Huh? I don’t remember making an appointment. 

I didn’t. 

Doc Brown and Marty McFly did. 

Cj Marty McFly

I laughed. 

Back to the Future has been a family favorite since it was on the big screen in 1985.  I was still in high school then.  Clueless about autism, vaccines, and parenting a child with special needs, I had other thoughts about the future.  I imagined I’d be traveling, exploring, and surrounding myself with friends.  Fast forward to when Marty McFly went to the future (which was actually 2015, the calendar app celebrates the anniversary of that event) and I am much less clueless about autism, vaccines, and parenting Ronan. 

I know more than a thing or two about autism now.  I am sought out by new moms for my vaccine knowledge now, and I’ve gotten pretty good at keeping Ronan happy and healthy, too.  Life’s been very different and a little more frustrating than I imagined it would be, but it’s also been much more enlightening and surprisingly rewarding than I realized it could be.  That’s because…

I never understood how strong a mother’s bond could be until I became a mother.

I never knew what parenting entailed until my own kids came along. 

I never knew how important mother’s instinct was until I didn’t use mine.

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Perfectly Understandable

Perfectly understandableBy Cathy Jameson

The face a person makes when they learn that Ronan's "autism" really means that he was vaccine injured can be full of:

  1. a) bewilderment 
    b) doubt
    c) curiosity
    d) sadness 
    e) all of the above

When the answer is e and it's all those responses at once, you know you're in for a good follow-up conversation.  Thank you, new friend, for that convo, for asking a ton of questions about that "autism", and for some sympathy.  And like you said, you don't know until you know...

Yes.  That.

You don't know how your kid (or you) will react to vaccines until your kid (or you) do react to vaccines.  So know what your kid (or you) are getting into.  Because once you vaccinate, you can't unvaccinate.

--

That was a message I shared with family and friends one day last week.  Earlier that day, I had had 2 other conversations about Ronan and vaccines.  The other 2 convos were with mainstream pediatric nurses.  Both times, both nurses were sympathetic.  Sympathy can be hard to come by, especially when vaccines come up, especially when they’re brought up by a mainstream medical person.  When I politely decline a vaccine, sympathy is usually the last thing I’m offered.  Things were different time.

The first nurse wanted to know if Ronan has he had a flu shot this season.  I kept my answer short.  “He had a reaction to that shot,” is all I said.

Without asking for specifics, without giving me any grief, and without giving me the look I’m so used to getting, she said that declining this year’s flu shot was perfectly understandable.  After her quick and polite response, I added, “Yeah, we don’t opt for it anymore.”  She agreed that after having a reaction to it, Ronan probably shouldn’t get it.  I wanted to hug her.

The second nurse asked if Ronan’s immunizations were up-to-date.  I said, “He had reactions to some, so…he’s all set on them now.”  Without batting an eye, she said okay and moved on to the next question. 

People are telling me that they feel like “the tide is turning” meaning that we, parents of vaccine injured children, are actually being heard.  The three times I was able to safely share Ronan’s story last week – that he’d been vaccine injured and that this “autism” is not straight up autism but is the result of environmental exposure – I was heard.  Being heard was thrilling.  So was being told by a mainstream doctor that what I am currently doing for Ronan was to be commended.

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Greater Than, Less Than

Greater than less thanBy Cathy Jameson

Ronan was asked if he knew the concepts greater than and less than last week.  I watched him as he gave an answer.  He pointed first to yes then to no on his letter board.  After waffling between the two, he was asked another question.  Is 9 greater than 2?  He seemed confident and answered with ease.  But he gave the wrong answer. 

Since greater than/less than were brand new concepts, I knew it could take time for him to grasp them.  Grasping that kind of information isn’t easy.  Retaining it can be even harder.  Sometimes, it takes lots of prompting and redirection to get Ronan to communicate during a task.  Other times, it takes the promise that a change to a more preferred activity will happen as soon as the lesson is over.  Strategies we’d used previously were attempted during his lesson, but Ronan became less consistent as more questions were presented. 

Watching Ronan attempt to participate, and then seeing him get a little frustrated because of the lesson, made me frustrated, too.  I’ve dealt with enough frustrations to last a lifetime.  So has Ronan.  I’d like every day to be a little bit easier for him than his previous day was, but lessons, therapy, and sometimes life in general, turn things into an uphill battle.  Those kinds of battles happen when we deal with less than adequate services, when we run across less than helpful providers, and when we come face-to-face with less than charitable humans who are supposed to help but don’t.  Thankfully, we have had more greater than experiences than awful ones lately. 

Life was greater when…

friends saw a huge need and pitched in to help us.

family reached out to us just because.

therapists spent precious extra time with us even though their sessions had ended.

I keep those positive events in mind while I wade through the negative ones.  Those negatives can be brutal, but I do my best to keep my chin up.  Generally, Ronan does, too. 

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Adult Vaccines: Got Yours?

Good Luck with VaccinesBy Cathy Jameson

Flu-shot advertising stays up year-round.  You can’t miss it.  Commercials, magazine adverts, signage in grocery stores and outside of big box stores, it’s the one vaccine that seems to get the most limelight.  Several times over the last few weeks I’ve been asked if I want the flu shot.  I’m used to that question and have a standard polite response for the person asking me, “Thanks, but no.”  After years of being able to keep my reply that simple, I didn’t have the option of doing so last month. 

At two separate clinics in recent weeks, I was asked not if I wanted a flu shot but when I actually had a flu shot administered.  Not only that, they wanted to know if I had had other vaccines as well.  Worse, it wasn’t a verbal response they wanted from me.  I was asked to enter the information on an intake form during the check-in process. 

What on earth?

For one of the appointments, I was checking in to see an orthopedist.  He, and his practice, have had nothing to do with vaccines in the past.  They’ve always specialize in bones, joints, and orthopedic disorders and injuries, never vaccines.  Why would they care what, if any, vaccines I have had?

Cj chart

I’m hearing that dental offices are asking similar questions.  So are eye clinics, too.  Adults, be aware.  You’re next! 

I knew a push on adults was coming.  The updated adult recommended schedule boasts as bloated a schedule as the pediatric one.  Since I have future appointments with the orthopedist, as well as with another specialist for an issue that has yet to be resolved, I want to read up on one more push that I’ve also been hearing about—standing orders At quick glance, I can see that standing orders was not created for my best interest but for mainstream medicine’s. 

For years now, I’ve known what to say when asked about my kids’ shot records.  Only recently have I had to protect and defend my own.  In the past, the kind nurses who’ve worked with Ronan’s specialists, including one of our favorite nurses,  don’t give me a hard time, “…looked up from the computer and apologized for asking, ‘I'm so sorry to have to ask you that.  You know I respect your decision, but I can't get to the next screen without answering this prompt...’  I thanked her.  Other nurses have not been so kind, so I smiled and said, ‘I understand.  Ronan doesn’t need a flu shot today, thank you.’”

I wonder how long I’ll be able to continue to say that though.  That nurse expected my “No, never, thank you.” answer and has maintained a polite and respectful demeanor toward me and Ronan.  Other providers, as well as the local pharmacist, haven’t been so kind or understanding.  The shock.  The hard stare.  The looking me up and down and judging me silently speaks volumes.  

A few weekends ago, I had to go in and talk the pharmacist about some changes to Ronan’s coverage.  After discussing the business I came in to discuss, she tried to sell me a flu shot.

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Rooted

Rooted in faithBy Cathy Jameson

Ronan chipped a tooth a few months ago.  Thankfully, it didn’t cause him any pain that I could see.  But because he can’t tell me verbally if it bothered him, I called the dentist to see if we could have it checked out.  In the past, having Ronan’s teeth checked hasn’t been an easy task.  Watching big sister’s braces adjustments have helped him know that there is a routine at a dental office – come in, sit and wait, be called back to the exam room, sit in the big dental chair and wait some more – but that’s where easy street ends.  Ronan is incredibly nervous when it’s his turn to sit in the dental chair. 

The sensory issues, the lack of understanding that people in lab coats are there to help him and not hurt him, and the fear of all that pointy, shiny equipment those lab-coated people want to put in his mouth can make for a traumatic event.  Add the insanely long wait time just to get on the special needs practice’s list, when we finally get him in the dental chair Ronan could be on edge long before we get into the building. 

I’d like to keep Ronan away from situations that cause him fear, but that chipped tooth needed to be seen by a dentist.  If it was like the last tooth he’d cracked, this chipped tooth might also require extensive work.  So, back in early May, when I noticed the problem, I made an appointment.  I prayed it was nothing to worry about and that he could be quickly seen.

When the appointment came around, one of Ronan’s therapists came with us.  What a blessing to have an extra pair of hands to help keep Ronan calm.  Not only did the dentist get to do a thorough exam, we were able to get an x-ray of the problem tooth.  The only other time we’ve ever been able to do that is while Ronan was under anesthesia.  The film confirmed that yes, the tooth is chipped, but as a precaution because of Ronan’s medical history and special needs, the dentist wanted to send the film to the endodontist.  Assuring me it was still a clean image, she wanted to get another set of eyes on it just in case.  More hoping to rule out potential problems that come with a chipped tooth, namely nerve damage, it seemed a simple enough request.  I gave her the okay and waited for the results.   

Weeks went by.  In the meantime, I read up on what people can do when they chip a tooth.  Ronan had never shown any signs of discomfort or distress and continued to seem to be fine.  He showed no visible signs of tooth pain, discoloration, decay nor any infection.  He ate hot foods and cold foods and was able to drink cold drinks.  He continued to allow two brushings a day.  The only change was that he went from tolerating a daily flossing to letting me floss his teeth occasionally.  All seemed to be going well, and as spring turned to summer, I’d completely forgotten about the worry that had come over me when I’d first discovered the chipped tooth.  Imagine my surprise when I got a phone call in August from the endodontic office scheduler.  She asked us to come in for a root canal consult.  I had the young woman repeat herself, “You need to bring Ronan in for a root canal consult.” 

Oh no. 

The receptionist continued and told me that the first available appointment wasn’t until mid-September.  Could I be there?  I said, “Well, if it’s just a consult, yes.”  I only know a little bit about root canals.  I wanted to hear what this specialist had to say.  I especially wanted to hear what he knew about root canals plus autism plus mito dysfunction plus anesthesia concerns.  Thinking the worst, it wasn’t Ronan’s turn to be nervous.  It was my turn. 

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Flu Shot Fever

Flu banner
We ran this post in 2014. Sadly, the flu shot push is stronger than ever. Yesterday I was at a WalMart and they were re-surfacing their parking lot. There, behind the safety wire and embedded on a slab, was a lonely sign "GET YOUR FLU SHOT!"

By Cathy Jameson

Flu shot advertising must have gone into high gear again recently.  I’ve noticed more outdoor signs being added to the lawns and sidewalk areas of several grocery stores and big box pharmacies in parts of my community.  Customers will literally trip over signs if they’re not paying attention. 

Those signs, and the automated phone call from our pharmacy on Friday morning reinforced something I try to forget:  it’s flu shot season.  I honestly don’t think flu shot season ever ended though.  One of the smaller pharmacies in town keeps their Flu Shots Available Here banner up year-round.  I don’t like to give that place my business and use another pharmacy in another part of town. 

That other pharmacy called me Friday morning with an automated message.  Ronan’s seizure medication was ready to be picked up.  Before I could hang up, the message continued.  “…after you pick up your prescription, remember that all of our pharmacies offer flu shots.  No need to make an appointment.  Walk ins are welcome!”

Gee, let me run right down there and ask a complete stranger jab me with this year’s flu shot.  Wheeee!    

Nah.  I know better than to blindly roll up my sleeve or sniff that mist up my nose.  I know better than to get a flu shot at my pharmacy too.  I’ve thought about that, but the last time I was in our pharmacy, I asked some questions that couldn’t be answered. 

I wanted to ask the pharmacy tech a little bit about the flu shot. 

She was busy.  I was not. 

She was trying to rush me.  I wouldn’t let her. 

Even though I know a lot about the flu shot already, I wanted to ask her more questions.  I also wanted to see the package insert.  The pharmacy tech tried to pawn the VIS  off on me. 

“No, the package insert, please.” I said, “It has much more information on it…like who manufactured the vaccine…and what adverse reactions I should look for…”   

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A Lifetime with Autism

Matthew_McConaughey_Kiehls_070917By Cathy Jameson

Matthew McConaughey is promoting autism awareness.  Several big news sources have picked up his video and are encouraging us to share the link.  In the short clip, McConaughey states that there are over 70 million people living with autism and that children with autism need our support.  Specifically, they need an early diagnosis and access to services.  Teaming up with a company named Kiehl’s, McConaughey wants to give these kids a real chance.  Sharing the video can help make that happen.  For every share, a $1 donation will be made to Autism Speaks.  With this campaign, McConaughey hopes to make a lifetime of difference. 

It sounds very, very sweet, but the donations will cap at just $200,000

200,000. 

That’s it? 

I’m not complaining. 

Alright, alright, alright! 

I am. 

Sorry. 

Let me try again. 

Thanks, Matthew?   

McConaughey’s final thought in that video, that’s he’s hoping to make a lifetime of difference, is what’s making me more cynical than hopeful.  A lifetime of difference.  What a perfect phrase for what I had hoped for my child compared to what actually became his reality.  Autism became his reality, and it’s not the kind that you see happily portrayed in the news or on television. 

I don’t know too much about McConaughey’s children, but I would venture a guess that he’s not the parent of a severely affected child with autism like I am.  I’d also venture a guess that his perception of autism is a far cry from the autism reality that my family lives.  Until he meets us, which I’d be more than happy to have happen, he and other Hollywood celebs focusing only on awareness, will never know how expensive and difficult life is for families like mine.  It is expensive, and some days, life with autism is very difficult. 

Difficulties aside, it costs quite a bit to care for a child with autism.  According to Autism Speaks in 2014, it’s $1.4 million over a lifetime.  CNN Money offered a higher figure of $2.4 million when an intellectual disability existed. 

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Labor of Love

Fierce loveBy Cathy Jameson

Ronan’s brother and sisters started school last week.  With all of the siblings back at school, it’s gotten a lot quieter in the house.  They’re up and out earlier and don’t return for hours and hours.  Ronan’s getting used to it.  I am, too. 

I cried after I dropped off the younger crew.  I wasn’t even out of the school driveway when the tears welled up.  Not until I dropped them off and drove away in silence did I realize how much I was going to miss them.  I hear stories of Moms begging for the school year to begin.  I’m not one of those moms.  I love having all five kids home.  I’m grateful how caring and understanding they are toward Ronan.  It makes me happy when we’re together.  My kids are fun and can be really silly.  I am in awe of how creative they are.  But before you think it’s all sunshine and rainbows all of the time around here, it isn’t.  Especially on a school morning... 

Even after years of practice, we still do our classic mad dash to get out of the house on time.  I’m glad that no one ever witnesses that – that part is not pretty.  Missing P.E. uniforms, mix-matched socks, and forgetting to pack up the night before can cause some serious delays.  On those mornings, we rush, rush, rush hoping not to be the last ones in the carpool line. 

Some days, though, when they’ve managed their time well, my typical kids are actually waiting for me.  I’m proud of them because at some point each and every morning, I walk away from them.  After all the book bags and lunchboxes are packed, I turn my back on them. 

Tiptoeing quietly down the hallway, all my energy gets focused on Ronan.  On any given morning, not just school mornings, Ronan remains fast asleep much longer than the rest of us.  On school mornings, we let him sleep until just few minutes before it’s time to go.  It isn’t the best strategy, but he needs all the sleep he can get.  Snuggled deep under his covers in a heavy slumber, Ronan would sleep all morning if allowed.  The kids know this and hate that we have to rip him out of his bed so I can get them to school on time.  CJ cars

Seeing how exhausted he will be even though he’s slept for 10-12 hours, they express just how unfair life can be for their brother. 

Mom, we should have let him sleep longer. 

He’s gonna be SO tired today.  

I’ll grab his blankie in case he falls back asleep in the car.

Sometimes, he will fall back asleep in the car.  I’m glad for that, and so are the siblings.  Even as young as they are, the kids are very aware of their brother’s medical conditions and how much of a domino effect each can have on him. 

On a good day, things are good.  We are ready.  We are on time.  We are full of energy – Ronan included.  But, the other days?  We don’t always make it to school by the first bell.  Some days, the alarm hasn’t gone off.  Some days, I don’t have my act together.  Some days, the children dawdle.  Some days, Ronan refuses to get out of bed.  On those mornings, you might find me rushing the kids to school in my pajamas.

Cj mugIf anyone is looking for me today, here's a mugshot. With that smile and that wild hair, I look just like her. If you put her in Mickey Mouse jammie pants - which I wore into the school to drop off kids because we woke up so dang late today, well then, she looks 'zactly like me.

Once I get back home from dropping off the kids, it’s time for Ronan to start his day.  Meds, supplements, and a hearty breakfast are first up.  Then, we get to work.  First on the list are the ADLs (activities of daily living).  Ronan’s not a big fan of those.  He has fine- and gross-motor delays.  What you and I think are simple tasks are quite complicated for Ronan.  Brushing hair.  Brushing teeth.  Clearing dishes from the table.  Sweeping the floor.  Most children can start working on those skills – and are able to perfect them - at an early age.  For someone who has low tone, an energy deficiency disorder, convergence insufficiency, and right-side weakness like Ronan does, these tasks are never preferred.  That’s because they require motor planning, eye-hand-coordination as well as the desire to attend to them.  When Ronan has zero energy, even after sleeping through the night, he can struggle with the most simplest of tasks.  It’s taken a lot of work, encouragement and years to get Ronan to want to do them, but happily, some of that hard work is paying off. 

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A Shawshank Moment of Confusion

Hope is a good thingBy Cathy Jameson

My jaw dropped as I listened to a phone message that came in over a week ago.  It was from a woman who works at an agency that helps us secure services for Ronan. 

“Hi, Mrs. Jameson.  I’m So-and-So from the agency.  In reviewing Ronan’s renewal paperwork, I think I see an error.  I really need you to call me back as soon as you are able so I can go over it with you.  On the form, it looks like you indicated that Ronan was not living full-time in your home.  Instead, it looks like you indicated that he is living in prison.  We cannot continue services if he really is in prison…so, you really need to call me right away because we need to terminate services if his residency has changed.”

Stunned, I hung up the phone. 

Prison?  Are you kidding me?!  Here’s right here next to me!  What the heck did I check off on that form?? 

I’ve made mistakes before, but not one as bad as this one.  Looking at the clock, I realized it was too late to return the call and speak to Ms. So-and-So.  The office was already closed for the day.  I would be able to leave a message, though, and quickly did that. 

Hi, this is Cathy Jameson.  I just heard your message and can assure you that Ronan lives at home.  He has never been in nor has he ever lived in prison.  He lives full-time in our house and is right here next to me.  I’m not sure which box was checked off indicating otherwise, so please, please call me back as soon as you are able.  If I do not answer the home phone, please, please, please try my mobile phone…thank you.

After hanging up, I racked my brain trying to remember when it was that I filled out that paperwork.  It would’ve been months ago.  Think.  Think.  Think!  After a few minutes, I remembered.  I’d received a packet from their office back in the spring and recalled that it was pages and pages long.  I try to keep a copy of every form that we’re required to fill out, so went to my office to hunt down that copy.  Looking through the files, I thought, Wait a minute…I didn’t fill out that paperwork.  I called that information in! 

I had the option to either fill it out and mail it in or call the agency with the information.  Opting to call it in, I waited until all the kids were out of the house.  That way, I wouldn’t be interrupted while I was on the phone.  I remembered that I spoke to a young representative who went section by section with me – together, we updated Ronan’s stats, to include that he lived full-time at home with his family!  If someone on their end messed up my son’s benefits, I would be more livid than I already was.  I could do nothing more about it until I got a call back, so I tried to focus on what I needed to do next – pack for an end-of-the-summer quick trip to the beach. 

Friday morning while driving to Surfers' Healing (which is always one of the best weekends ever for our little family!) we had lots of time to talk in the car.  I told the kids about the phone call and how shocked I was to hear that they thought Ronan was a jailbird.  Can you imagine… Ronan behind bars!  We had a good laugh, but then things got a little bit serious. 

“Will he really lose his benefits, Mom?” one of the kids asked. 

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Best of: Syllabus For Your Life with Autism

Autism chalkboardNote: Cathy is enjoying a weekend off with her family. Here's a great post for back to school. 

ByCathy Jameson

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

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

Course:  Life With Autism

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

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

Scheduled Class Time:  24/7

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Step-by-Step

Little-by-littleBy Cathy Jameson

I had a meeting last week with some of Ronan’s people who help coordinate some of his services.  When we coordinated a time to go over everything, one of the gals made sure to mention that it could be a very long meeting.  It was.  The agenda included a review of what Ronan can do.  It also included what he can’t do.  I had to answer a slew of questions that covered life skill, daily living skills, and safety skills.  As the parent of a special needs child those kinds of meetings aren’t unusual, but they are never fun. 

Friday afternoon, I was asked question after question after question.  Here we go, I thought.  Time to see how delayed he is according to their scale.  Half-way through the meeting, it seemed like the theme was Ronan Can’t ____ (fill in the blank with any number of skills he absolutely cannot do) Independently.

But, because it takes several steps to accomplish a particular skill, Ronan got some credit for being able to do some of an activity:

Can Ronan take a shower unassisted?  No.

Can Ronan identify hot and cold?  No.

Can Ronan turn on the water?  Yes! 

Kudos to the kiddo for knowing step 1.

Can Ronan make a meal?  No.

Can Ronan set the table?  No.

Can Ronan indicate that he is hungry?  Yes!

And he tells us that he’s hungry through his signs, by taking a bowl (or 7 when he’s really, really hungry), or by taking out the food that he wants to eat. 

Even though it was hard to answer question after question after question, by the end of the meeting I was able to reflect on what Ronan can do.  My favorite portion of the intake questionnaire had to do with family:  Can Ronan identify his family members?  Can he write their names?  Can he call on family for help? 

Being non-verbal, Ronan may not be able to actually call to them, but he knows we’re all here to help.  I see that when his big sister lovingly calls Ronan over to help him begin his bedtime routine.  I hear that when his little brother happily changes out a movie for Ronan as soon as one movie ends.  I cherish that when I see his two little sisters giggling gleefully out the door as they accompany Ronan on an outing to make sure he will be able to navigate through the community better.  Unfortunately, Ronan isn’t completely ready yet to navigate the community on his own.  That’s been proven with past wandering attempts that he’s made.  I was reminded of those on Friday when safety skills were brought up in the meeting:

Can Ronan plan an outing on his own?  No. 

Is Ronan aware of danger?  No.

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Vaccine Law and School Exemptions

Back to school cathyBy Cathy Jameson

Back to school.  I love this time of year.  New supplies and new academic adventures await.  My kids are somewhat excited to return to school but more so for the social aspect.  They cannot wait to see their friends again.  Friends are a good thing to have in life.  I’m grateful for the ones I have, especially for the friends I’ve made online. 

I belong to a lot more parenting groups now than I did when my children were younger.  The people in these groups, many who have become personal friends, are a lifeline for me.  From the old timers to the youngins’, many of whom are more in tune with their parental rights than I ever was at their age, we have a safe place to talk, vent, and collaborate.  From poop talk to getting the skinny on who’s an autism friendly doctor or therapist, I’m drawn in to several conversations throughout the year.  Since the start of school is right around the corner, some of the latest convos have been about school shots. 

I’m seeing talk about shots in several groups that are medical- or vaccine-related and in typical parenting groups, too.  People are asking if it’s true that their child must be vaccinated.  I heard they don’t have to be but my district just sent me a notice. If I don’t get her the vaccine, she won’t get her schedule.  Most who’ve chimed in to answer know quite a bit about vaccine law and about their rights.  But, since not every member of the group is vaccine savvy yet, they’re gently reminding the newer folks that what some of the schools and health departments are saying about school shots is misleading.  Once that newbie parent is provided the accurate information, that yes, their child can still go to school without getting that Tdap vaccine or that booster, some of the parents band together to set the district straight.    

Guys!  XYZ district is saying that shots are required for school entry.  Shall we go school them?  
Triple photo
Photo credit:  Google Images

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An Infinity of Summers

OriginalBy Cathy Jameson

An article that people were posting on some social media pages last week caught my eye.  The tagline read, How many summers do you have until your children are grown?  Typically, it’s 18 summers a parent will spend with their child before that child ventures off into adulthood.  If my son and I had only 18 summers to spend together, we’ve just got 4 more to go. 

Four more summer vacations. 

Four more family summer road trips. 

Four more lazy summers before high school graduation, college, and independence. 

But my child’s not typical.  Our summers, like every other season of the year, are very different than those of his peers.  Half-way through is teenage years, Ronan’s very much delayed.  Non-verbal with regressive autism and seizures, he’s more dependent than other kids are. 

On constant watch – for both seizures and the potential for wandering – we still manage to have fun.  Outings to the mall, the park, and the pool happen, but only after doctor appointments and therapy sessions are over.  I’d love to have a break from it all, but with as many skills Ronan is still working on achieving, appointments and therapies are a year-round occurrence. 

Where other children and their families can change up their routine, Ronan thrives on keeping things the same.  We do get to venture a tad from the norm, like when we went away last month, but those adventures require a lot of “the norm” to accompany us – favorite books, waterproof bedding, food items, and entertainment, we bring a lot of Ronan’s everyday things with us when we go.  While the surroundings may have been different, having the “comforts” of home helped keep him calm during the transition to a temporary summer routine.  Without that calm, vacation – and the relaxation the rest of us were able to experience, wouldn’t have happened.  We’ll hope for a repeat of that whenever we can schedule another getaway. 

For the next four summers, Ronan will continue to be carefully watched.  He’ll be monitored for seizures and heat intolerance.  He’ll also partake in the usual academic opportunities and therapies we schedule throughout the summer, too, so as to maintain consistency.  It’s not how I imagined each June, July, and August would be, but it’s what I need to do to keep things going for him and for us.  Of course, we pray and work toward a miracle, but if things continue as they’re going now…

Ronan won’t likely get his permit next summer. 

He won’t be working on filling out college applications the following summer. 

He won’t be paling around town with his best guy friends looking for fun stuff to do in town either. 

The siblings are aware of this and generously give me and Ronan the time and space needed to keep his days as stable as possible.  They don’t always like that they’re missing out on what their friends are getting to do, but they understand that Ronan’s special needs cannot be ignored.  The older they get, finding a balance for them hasn’t been easy, and some days, they will vocalize some of that disappointment.  They’ve been so patient with their brother for such a long time now.  Never ever blaming him directly, they’ve learned how to deal with how much of my attention is taken up by Ronan, his appointments, and long list of needs.  I’m surprised (and thrilled!) that they have been as understanding as they have been. 

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Remembering Dan – Six Months Later

Blue sand timerBy Cathy Jameson

The kids and I celebrate half birthdays.  We don’t do them up like we do a regular birthday but six months after a birthday, we commemorate the day with an extra hug and a half a gluten-free cookie or cupcake (or half a gf-granola bar if there are no desserts in the house).  It isn’t a major celebration but a fun one that reminds us to look how far that child’s come from their last birthday.  It gives us a chance to dream about how much more growing, learning, and living they’ll get to do before their next birthday comes around, too. 

When I glanced at the calendar this week, I remembered that almost six months has gone by.  We won’t be celebrating a half birthday this week, but we will remember something else.  It’ll be a day of reflection, not of treats, because something incredibly sad happened six months ago. 

We lost a writer. 

We lost an author. 

We lost a powerful voice. 

We lost a friend. 

Six months ago this week, we lost Dan Olmsted.  It’s been a short six months, but it’s also felt like a long six months.  We began to create a new routine without him.  We began the healing process.  We remembered, or are at least trying to remember, to keep going in a forward direction.  That’s been hard because there are so many more things I wanted to know from Dan, to read from him, and to ask him. 

He and I had been able to get together a few times, for which I’ll always be grateful, but with how busy life got for me, those meet ups weren’t often enough.  I’d always been able to send Dan a message though.  I’d email him when I’d read something of interest or when I needed to hear a word of encouragement.  I hate that I can’t send a quick email and get an even quicker reply back from him now.  He was always available to me, as he was to a lot of other parents, and never made me feel like I was a bother. 

Available, knowledgeable, and kind.  Dan was extremely good at what he did.  And I miss him so very much. 

Some days, I still can’t believe that he’s gone.  I know that a lot of us here still miss him so.  In promising to keep his memory alive, I wanted to share something that I’d written after friends and family had gathered to remember Dan, his life, and the work he’d done.  I’ve edited it a tad for today’s Sunday post:    

Paper crane
"The paper crane.....a compelling symbol for hope, love, honor, and peace."

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Avoiding Risky Situations

CautionBy Cathy Jameson

When my kids’ sports seasons ended this spring I was glad for the break.  Don’t get me wrong; I love supporting my kids and seeing them excel on the field and on the court.  But the late afternoon practices, the travel time to away events, and the later-to-bedtime evenings took a toll on all of us.  When the seasons ended, and when summer vacation finally arrived, I soaked in all the extra time that I wasn’t running here, there and everywhere. 

That respite lasted all of about 3½ weeks. 

My oldest had fall sports on the brain long before last school year ended.  She’s been dreaming about being back on the court for months now.  I love her enthusiasm and am her biggest cheerleader. I promised to make sure she would get to some of the practices when the summer schedule was announced.  I was all set to add those to the family calendar again earlier this week, but before getting back into the swing of things, Fiona had to get a sports physical.  Not usually covered by insurance, other parents in the past had let me know that we could go to an urgent care or walk-in clinic to get that exam done.  Since it would take a while to get an appointment with our regular doctor, I decided to go to a walk-in clinic.  But which one? 

Do I go to the one where a young doctor attempted to scare me with outdated third-world country statistics?  Do I go back to the one where the charge nurse accused Ronan’s little sister of making herself wheeze and making her throat constrict on command when her throat was in fact actually closing?  Do I go to the one where the nurse was hell bent on selling me the HPV vaccine for my daughters when I’d already politely declined the vaccine several times?  Or do I go to the one where they wanted to give my daughter a flu shot when the reason for our visit had nothing to do with the flu or the flu shot but everything to do with a potential bone break? 

Decisions, decisions.   

Since vaccine discrimination  is alive and well, I wanted to be careful with whom I chose.  While one place offered a deep discount for the physical, I went with my gut and headed to another place.  We’d had success the year before for a minor medical issue.  When we’d used their services previously, the medical staff was attentive, polite and attended to the medical condition that my child presented.  Not only that, vaccines were not even discussed.  That’s because vaccines had nothing to do with the issue at hand.  Imagine that!  Where other urgent care places we’d been to took a ‘grab and stab’ mentality (you’re here, you’re ‘behind’ on vaccines, let’s go ahead and catch you up), this group focused on the medical situation that brought us into the place.  Hoping for a repeat experience, I said a little prayer before we got to the place, “Lord, if things get heated, as You know has happened in the past, please help me to know what to say and to then say it with charity.  Amen.”

Prayers answered.

The nurse recognized us and was welcoming as we walked in.  Holding nothing back, I felt confident in sharing the personal and medical information that was asked of me.  I don’t always get to do that.  Other providers who’ve been pushy and one-sided make me clam up.  They get the basics or a carefully worded statement from me about my child’s medical history or vaccine status, and that’s it.  I’m always honest.  It’s just that lately, with how closed-minded some people are, and with how threatening some providers can be, I’m more judicious in how I reply. 

Thankfully, we ran into none of that last week.  And since Fiona has no pressing medical issues that would restrict her from participating in athletic activities, the exam was over almost as soon as it had begun.  I paid a little bit more than I wanted to for it, but we walked out with what we needed and without being heckled or belittled in any way. 

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Breath of Life

Church windowBy Cathy Jameson

I’m constantly being reminded of some simple prayers that Ronan’s siblings have been saying for years.  Nightly, and even during the day when we get a quiet moment, I hear the children pray:

Lord, help him to talk.

Lord, help him to communicate.

Lord, help him to please play with me.

Technically, the prayers are being answered.  They’re just not being answered like they’d envisioned.  The siblings hope that their prayers would bring forth complete healing, 100% restoration of speech, and being “all caught up” to where they are developmentally.  A word here, a successfully used sign or gesture there, and playing next to where they play is nice.  But they’d like more.  Instead of getting discouraged, they up their prayer game. 

We should ask other people to pray for Ronan!

CJ 1 7 8

Done.

We should ask the saints to pray for Ronan, too!

CJ saints

Done.

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Wish You Were Here

Wedding pew
By Cathy Jameson

Last week, I shared a post about our family’s summer vacation.   Despite the short business trip that took my husband away for a few days and that exhausting night that Ronan stayed wide awake until 3am, it was one of the best family vacations we’d ever had.  I got to sit by the sea, the kids reconnected with friends they’d made last year, and Ronan ended up enjoying himself while we were up north. 

I’m always glad that Ronan is able to adjust to the major changes that come with a road trip.  The long drive, the new scenery, the drastic changes to his routine - it’s encouraging that he can adapt.  It isn’t always an easy transition going from our home to staying temporarily at someone else’s house.  With Ronan being able to adapt last week, like he did on a previous vacation, it keeps me hopeful that we’ll continue to be able to go away as a family in the future. 

We should all be away again this weekend.  Our oldest niece is getting married.  But a back-to-back road trip just wasn’t in the cards.  Autism helped destroy that plan.  We could’ve certainly tried to get all 7 of us there, but a 12-hour car ride with Ronan on Friday plus a 12-hour return trip on Sunday didn’t make sense.  That, plus having to spend two nights in a hotel instead of in the comfort of a friend’s house (who absolutely understands and doesn’t mind children with autism staying up until 3am) was not possible. 

Ronan hasn’t stayed in a hotel in years.  The last time he did, things didn’t end well.  Not only did he stay awake till all hours of the night, he’d stayed up and laughed most of the night, too.  After the evening shenanigans, it was no shock that he’d be exhausted and miserable the next day.  Signing “no” to the proposed activities or “home” when we asked what he wanted to do were clear indicators that he was ready to beat feat far away from the fun the rest of us were trying to have.  Not wishing for a repeat of that weekend away, which was similar to two other trips that required hotel stays, we brainstormed different options for this weekend. 

After going back and forth with ideas for several weeks, we knew that our options were limited.  We discussed all of them and every single potential scenario we could think of.  With how formal this weekend would be – the church, the ceremony, the vows, the reception, the professional photos, we were left with one option – split up.  Since it was a niece on my husband’s side of the family getting married, we decided that he’d go to the wedding.  Flying was out of the question, so we planned for him to head south with some of the kids with him.  I’d stay home with Ronan and the others.  It wasn’t an easy decision to make, especially because some of us would be missing out on a monumental occasion, but it’s what our family had to do. 

It isn’t the first time the family’s had to split up.  We do that weekly for Sunday Mass.  We do that for Ronan’s siblings’ sports and school events all of the time.  But this weekend is one that we’d hoped that we could all be together to witness and to a bride and groom begin a new life together.  As much as I’d like to be there with husband and extended family to celebrate, it’s my turn to stay home. 

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Home Away

Cat Beach
By Cathy Jameson

We started talking about taking a summer family vacation several months ago.  With as many needs as one of my children has, with my husband’s job demands being as intense as they are, and with autism reality sneaking in and breaking all of our best laid plans, it’s a good thing that we took that long to plan our getaway.  

Our plans changed two weeks before we were to leave.  They changed again one week before we were to leave.  They changed as we hit the road last weekend, too.  We normally don’t tell our typical kids that we’re leaving on grand adventures until right before we go, but I’m glad that we gave them a heads up this time.  If there’s one thing that autism has taught me and Ronan’s siblings, it’s that we have to be flexible.  If we were going to make this vacation work, we’d all have to be flexible - Ronan included.  

Ronan likes his routine.  He likes to know where his favorite books, blankies, and Wii discs are.  He also likes to know where Daddy is also.  If something’s out of place, he may get a little out of sorts.  That could include taking longer to finish a task.  It could mean he refuses to comply with a simple request.  If something is really bothering him, it could bring on some negative behavior.  Things were going fairly well for Ronan on the first day of our vacation.  They were going okay on the second day was well.  But on the third day, the day we had to drop my husband off at the airport to attend to some business that couldn’t wait until this week, that day threw Ronan over the edge.  That night, after a long day of signing Daddy Daddy Daddy Daddy Daddy, Ronan refused to go to sleep.  That’s not entirely unusual.  Ronan will have sleepless night at home, but he was hundreds of miles from the comfort of home, his routine, and now Daddy, too.  Things were getting a little more stressful for Ronan.  There were getting a lot more stressful for me.  If we were going to survive the next 3 days before my husband returned, I knew that I needed to make a change.  That would include changing my attitude.  

We were staying at a friend’s house and sharing a bedroom with the siblings.  If Ronan didn’t sleep, it was likely that the rest of us wouldn’t sleep either.  I’m usually a “cup is half-full” kind of person, but being this far from home with an irate, non-verbal child who stayed wide awake until 3am was turning me into a gloomy Gus.  Add being jarred awake at 4am after Ronan fell out of the bed he and I were sharing, and I was pretty much done with our family vacation.  Add in some odd seizure activity the next day, and I was visualizing myself hauling back down the highway heading for home.  As easily as it was to call it quits right then and there, I’m glad that I didn’t.  

As he usually does at home, Ronan bounced back.  

The next day, Ronan was not ready to explore town like the rest of us were, so the friend whom we were staying with offered to watch Ronan for me.  It’s been a year since she’s seen us, so I was hesitant to leave Ronan with her.  But my friends, especially the ones who’ve become more like family to me, are very quick to tell me, Go. You need a break.  I’m here and can handle whatever needs to be handled.  Ronan will be fine.  I’ll be fine, now go.  

So I did.  

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Unlike His Father

Happy Father's Day TypewriterBy Cathy Jameson

To maintain a joyful family requires much from both the parents and the children. Each member of the family has to become, in a special way, the servant of the others.   - Pope John Paul II

When we learned that our 2nd born child would be a boy, both my husband and I began to imagine what ‘life with boys’ would be like.  Our first child, who was quite the girly girl at the time, was all about frilly dresses, dainty dolls, and the color pink.  The idea of adding another blessing to the family, and knowing that that blessing would be a boy, filled us with great excitement.  We imagined our future would include little blue outfits, Tonka trucks, and scraped knees.  We imagined rough and tumble play and making mud pies in the backyard.  We imagined we’d one day be sitting on the sidelines at a sporting event cheering him on.  We imagined all sorts of typical-boy milestones and super star achievements.  Never could we have imagined how far from typical our son would actually be. 

Our pride and joy, Ronan still is a super star.  He excels in areas that other kids have, but they’ve long surpassed the few capabilities he’s worked years to attain.  Dressing himself.  Feeding himself.  Entertaining himself.  It’s taken much, much longer for him to learn about the skill, to want to address the skill, and then to actually master the skill. 

Small steps and sometimes even smaller baby steps have gotten Ronan to where he is today.  While we’d both love for him to be able to catch up to where his siblings and age-mates are developmentally, we know that for Ronan to accomplish things, it has to be at his pace.  That can be hard. 

As many years into this journey that we are, the realization that Ronan is still so far behind can make us emotional.  We know that Ronan won’t follow in his father’s footsteps and tinker with cars or motorcycles.

CJ Father 1

He also won’t race 12 meter sailboats like his father did. 

CJ father 2

He won’t be able to join the military like Daddy did either.   

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See Something, Say Something

Open your eyesBy Cathy Jameson

Over the years, I’ve heard wonderful stories from other parents about their child’s caregivers.  I learn that these other humans are kind, compassionate, and able to get the child to do things no one else thought possible.  I love to hear about those victories and those kinds of stories.  Unfortunately, other caregiver stories with not so happy endings have been shared by parents, too.  Those jaw-dropping accounts are shocking.  They are few and far between, thankfully, but even so, they can quickly suck the wind right out of me when I hear them. 

Some of those incidents have made the news Other times, the person or the facts about the abuse they’ve inflicted gets tucked away.  Not until that person strikes again do details about their past come out.  Withholding that information serves no one, especially the non-verbal severely affect child with autism.  I shed tears when I learn that a child has been harmed – either emotionally or physically – at the hands of another.  When it’s an adult who’s belittled, abused, or caused serious injury to a child with a disability, my blood boils.  And when it’s my child who’s been mistreated, you better believe I’ll make some noise about it. 

It recently came to my attention that an individual who’d been working with my child needed to go.  On paper, they were a perfect candidate for us.  In person, it was a different story.  Ronan got hurt.  It wasn’t physical, thank God, but damage was done.  That hasn’t happened often, but when it has, it’s made it very hard for me to trust people again.   

I will sometimes say, if Ronan’s happy then I’m happy.  Lately, Ronan had become increasingly unhappy, especially - and only – after some therapy.  He wasn’t the only one who’d grown increasingly unhappy.  I’d been getting a gut feeling that something was off.  When I would drive away after Ronan’s session had started, the pit-in-my-stomach feeling lingered.  I knew something had to give. 

Changes had been made, but Ronan’s needs continued to be overlooked and he was starting to get increasingly upset.  I’ve promised to care for my children, to love them, to teach them, and to protect them.  Protecting them, especially Ronan, has the biggest challenge.  I am his eyes.  I am his ears.  I am his voice.  He couldn’t tell me, ‘Mom, something’s not right.  Can you please make it better?’, but his behavior sure did.  Ronan took out his frustrations, and no doubt, lost a little faith in me after his desperate attempts to communicate his dismay during therapy sessions.  By the time I was clued in, it was too late.  The situation was beyond repair.   

A program we’d worked hard to create was slowly being destroyed by someone I’d trusted.  Having to address that problem and the person who’d caused the issue made me livid.  While this person gets to quietly exit our lives, I was forced to deal with the fallout.  Holding onto hope that we can move past the interruption and the pain, the burden I carry feels a tad heavier now.  It’s a terrible weight to bear, but if not me, then whom?  Certainly not Ronan!  He’s dealt with enough already. 

With Ronan’s needs as great as they are, though, I do still have to rely on others for assistance.  Their experiences, their referrals, and their qualifications are necessary.  They can easily make the process smoother.  But if they don’t truly want to help, or if they are only here for their gain, their assistance will be a detriment instead of a benefit. 

I am rendered speechless when I’m forced to deal with the ineptitude of an adult.  When that adult has all the makings of being a perfect, credentialed professional but who can’t see the amazing and incredible fragile human being placed in their care, I am reduced to a puddle on the floor.  Eventually, I pick myself up and begin to move forward.  I have to.  As much as I’d like to do everything on my own, I know that I cannot. 

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Best of: Walk by Faith

DearDiary Note: This post ran in 2010.

By Cathy Jameson

Dear Diary,

I had a scary dream last week. I was being hunted.  It was sunset in a state park and I sensed something near me. I quickly planned a quiet retreat from a medium-sized grizzly bear walking toward a picnic table. At first, I thought I could manage eluding the animal but when he spied me his fierce growl caught the attention of another sizable bear standing by a stream. Panic set in but I remained outwardly calm.  I knew I had only a few minutes before I would either become a light snack or could plan a successful escape.

As I backed up the trail, I realized I was not alone—most of my family was also with me.  Ronan wasn’t there but my husband and other children were. The bears multiplied in number and we now had to escape six hungry, wild bears.  Soft light from the window of a small building shone down the path. My husband led us to an old lodge built on stilts. We hoped that would be a refuge because there was no where else to go but into the bear’s territory.  We tiptoed up the steps and reached for the doorknob. The lodge, whose wallpaper dated back to the 70s era, had wall-to-wall shag rug. It greeted us as we tumbled into what we hoped would be a safe haven.

A woman sat at a metal desk with an IBM Selectric typewriter. She didn’t see us or hear the major sigh of relief we exhaled as we scrambled into her writing nook. Pages of her book, an expose, retold of newly discovered cover-ups in the medical industry.  I barely glanced at this minor character in my dream but thought highly of her accomplishment—her efforts were going to help thousands.

Meanwhile, back at the now darkening state park…six bears watched us and lumbered toward the lodge. Another wave of fear set over me. I couldn’t lock the door. It had been solidly secure prior to our arrival but I had loosened the hinge in my attempt to rush in, find safety and slam the door closed.  I peeked through a sliver in the doorway that couldn’t be latched and saw another family standing at the doorway. Three people gingerly knocked also trying to hide from the doom and gloom that lingered below.  We let them in and stared at each other in fear. Glancing through the sheer curtain-covered windows, I saw silhouettes of another family, and then another. No one spoke but we knew we had to bring them in and stay safe from those hungry bears.

Diary, I was petrified! All the while, the woman at the typewriter continued to type. Her clickity clack was the only noise I heard. Soft light from her lamp and an old television set were her only other pieces of furniture. The TV was on but only static-filled stations were broadcasting with no sound.  The bears grumbled and stumbled below the lodge but never came up the stairs. I had a vision of one of the children getting too close to the smallest bear but physically shook myself to keep from continuing that notion. I began to feel confident as I glanced around the small room at the people in our midst. Again, my thoughts were: save my family, help these people, stay safe. And then, I woke up.

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Why Not Autism Prevention?

Ounce of preventionNote: Ben Franklin would be shocked to find out that a diagnosis as life altering as autism is denied not only prevention, but cure too. Maybe it's all about the Benjamins?

By Cathy Jameson

We shared the cover of a book on the AofA FB page last week.  The book is being published by Skyhorse, a large publishing house headquartered in New York City.  The author is the parent of child with autism.  I haven’t had a chance to read much about the book yet, but when I saw the teaser I thought who better to share some insight than a parent knee-deep in raising a child with autism.  Dara isn’t the first parent to share their story in book form, but I believe hers could be well received.   

As usually happens when we share parent-driven resources, we got some hopeful comments.  We got some not so hopeful comments when that book announcement went up on the page also.  Just like when we don’t sugar coat the type of autism our children live, those who shared unkind remarks let us know exactly how they felt, too.  Sometimes we keep the not so kind comments visible for our readers to see.  Other times, they end up being hidden or deleted but only after a screenshot has been made.  

Cathy Prevent 1

I wish I found these sort of distasteful comments made on public pages shocking, but I don’t.  I expect them to show up every now and then and especially when words like heal, cure, and prevent are mentioned in a posts.   

Heal my child.

Cure autism.

Prevent the rate from rising.

Say that about childhood cancer, obesity, or juvenile diabetes and efforts are lauded. 

CAthy prevent 2

If it’s cancer, we’re encouraged to fight it.

If it’s juvenile diabetes, HPV, AIDS or issues like homelessness, violence, sex trafficking, and poverty, we’re asked to end it and to race, or walk, to prevent it.

If it’s Alzheimer’s, Parkinson’s, HIV, or Leukemia, organizations ask us to help fund research to find a cure.  When it’s those diseases or disorders in the limelight, gobs of research money gets raised, A-lister celebrities lend a hand, and the public rallies at festivals, concerts, and at major road races.  But when we say heal, cure, or prevent autism like we did last week on our FB page what do we get?

Insulted.  Targeted.  Bullied.  

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When Grandparents Visit With Autism

Grandpy hand
Kim's Dad with Bella in 2010

By Cathy Jameson 

My parents bless us in so many ways.  From spiritual support in the form of prayers, to physical support when they visit, I appreciate every single thought, prayer, and extra hand they offer.  A few days after they’ve arrived, I always ask my Mom, "What changes do you see in Ronan?"  On their most recent visit, she shared...

We had a bookend visit where we saw Ronan for a couple of days, then were gone almost a week, then saw him again for a few days.


On the one hand, I saw him give his big sister a two-arm embrace with big smile, an embrace she had to break off before he did.  On the other, he seemed to wake up lethargic with low energy and had no interest in his usual activities.  He also seemed to want to withdraw to his room and one evening, when called for dinner, he had apparently fallen asleep.

I always wonder, and will sometimes ask, "What changes do you see in me? in the siblings? in the family dynamics? in our household?"  I don't always want to ask those questions because sometimes I'm a hot mess.  Sometimes the kids aren’t getting along.  Sometimes, with our schedule being as busy as it is, our family is tripping over each other as we race out of the house in opposite directions for extended periods of time.  And because of that, sometimes our house is in disarray and would benefit from an army of merry maids to put things back together. 

I don't want to be called out for my messiness or be told that the children's behavior is less than polite.  But it's always good to get some sort of feedback - and when it's coming from my Mom, it's always accompanied with a gentle and well-thought out suggestion on how to make things better. 

This last visit, Mom offered the following thought about what she’d learned after spending more time with us.  But before sharing that thought with me, she shared a beautiful reflection that she’d written a few years ago.  I won’t share all of that, but I believe other parents and grandparents can relate to it so here is part of it…

And though she had not intended it, she would become my teacher.  I who held her hand and taught her to walk and talk, to eat and dress herself, to read and write, I learned from my daughter Cathy that love that is most challenged is the best love of all.

CJ hand

I have learned, when talking about or with a challenging child, to not label her as a "problem child" or to say "bad girl" when she does something wrong.  As God the Creator reminds us in Genesis, all He made is good, and we His children are very good.  It was a hard-learned lesson, especially with my headstrong, What-About-Me child.  I thank God that I accepted that lesson. What I appreciate about Cathy, her husband, and indeed all of Ronan's siblings is that they have accepted that Ronan is very good.

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Religious Freedom Under Attack by Church Leaders

Protect-Religious-Freedom-SignvFB-403-403By Cathy Jameson

Thanks to Patrick Flynn for the title for this piece.  Some of our readers may have heard about Patrick before.  Polly Tommey caught up with him while the Vaxxed bus was in north Florida last month. 

Fast forward to 3:42:00 to hear Patrick’s story.  (If that link does not work, try to view the video here – fast forward to 3:42:00.

Ever since the Bishop in Patrick Flynn’s diocese declared that vaccines were mandatory in order to attend diocesan schools, Flynn’s been fighting to get his youngest back into school.  Never having a problem submitting an exemption for any of his children before, he was not willing to kowtow to the Bishop’s demands.  I’d been following the Flynn’s story because several of my own family members in the same diocese found themselves in the same position.  As luck, or the Holy Spirit, would have it, I ran into Patrick Flynn while I was in Florida two weekends ago. 

Only in Jacksonville for a short stay, I leaned over to my mother-in-law while we were at Mass and asked her, “Where do the Flynns go to church?”  She smiled and said, “Here.”  I whispered back, “Well, if you see him, point Patrick out to me.”  We didn’t see him in the church that morning, but as I crossed the street to the parking lot after Mass, there he was.  I asked if we could share his story here, and he said yes.

--

Cathy:  We learn so much from other parents here, so thank you for taking time to share your story.  Give us a little bit of a history as to what lead up to the filing of the lawsuit.

Patrick:  My wife and I had a son in Kindergarten in a Catholic School in Jacksonville, FL.  In 2013 and 2014 respectively, two of our other children graduated from the Eighth Grade of this same school.  We were also very active members of this Parish and 100% faithful to the Magisterium.

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Happy Mother's Day!

Mother atlasNOTE: This is a "best of" from 2012.  Cathy has 5 kids and deserves a day off. And she has a post we're running tomorrow. So  much for that day off!   Happy Mother's Day, friends.

By Cathy Jameson

Dearest One,

As you open your eyes this morning, even if your day started at some ridiculous hour because of your child, I had a thought I needed to share with you:  no one but you knows what it takes to be the mother of a child like yours.  No one understands his health needs like you do.  No one prepares his enzymes, supplements or allergen-free foods like you have done for years.  No one sits through hours of therapy appointments like you have and will continue to do.  No one stays up late at night reading message boards discussing speech therapy, parasite protocols and IEP meeting strategy.  No one.  What you do for that child of yours is amazing. 

Today is your day.  Enjoy it.  Soak in it.  Revel in the attention.  You might be showered with millions of smiles accompanied with hand-made gifts from your typical kids.  You might receive flowers to brighten your day.  A box of chocolates wrapped just right will taste delicious as you savor its tasty indulgence.  Someone, or several someones are shining today’s spotlight on you.  Take it all in today.  Be that typical Mother you still dream of being to all of your children because tomorrow you will return to reality. A reality where no one truly knows what it takes to be a mother of a child like yours. 

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