Tuesday, April 28, 2015

The Very First Post

Happy 100th post!  

For today's post, I thought I'd share the first story that I ever wrote about vaccine injury, about Ronan, and about being Mom to that super kiddo.  

Originally published on the Rescue Post site, you can find the story on AofA.  You just need to go w-a-y back in the archives to June 2007 to find it.   

Sadly, the current members section needs an edit, but the rest of the piece is still pretty accurate.  I joined a club I didn't mean to join.  Many of my friends unknowingly joined that club, too.  To the spectacular moms and dads who have joined that club, as much as I don't like how we met, we've learned from each other.  We've supported each other.  We've celebrated together.  And we've cried our eyes out together, too.  That part is hard, but through it all, we've always had each other.  For however long we're in this club, I pray that we always have each other.       

xo, Cat


To read the original post, please follow this link: The BioMoms Club



Monday, April 27, 2015

Swim Buddy

Ronan tested out a walker last week during PT - he took to it very well!  As much as I hate to see Ronan need to rely on a walker, I am very grateful that he can still get up and go.  We'll continue to encourage him to do that while also trying to keep the neuropathy pain at bay.

Ronan seemed to be in more pain last week.  He wanted more help while walking and he rubbed his toes and feet a lot.  He rubs his feet hours after wearing his orthotics.  And he comes out of PT exhausted.  We know that the orthotics and the PT can help, but they aren't going to be the only answers for this leg problem.  

Ronan needs the therapy, but if he's in constant pain (which some days, it looks like he is), then therapy is going to be a struggle.  And it might actually cause more pain then reduce it.  Since we don't want to add more pain and more struggles, we did some brainstorming. 

While trying to think of what we could do to strengthen Ronan's legs, I reached out to a friend who is a licensed massage therapist and got some ideas from her - this week's goal is to find an LMT who can work on Ronan.  Another goal for this week is go back to the pool.  

I took Ronan and his youngest sister to an indoor pool on Friday after a busy day of appointments. Ronan was thrilled!  He loves, LOVES, loves the water.  He always has.  Friday was no different.  Ronan loved the hour or so we got to stay at the pool.  



I'm hoping to go back 2 times this week.  If things work out, we'll make a dip in the pool a regular thing for Ronan.  The low impact exercise, the floating, the splashing, and the peaceful happiness it brings him will do wonders.  I love it when we find something that will do wonders for my little boy. 

xo, Cat



Wednesday, April 22, 2015

Paperback



TMR's Autism Beyond the Spectrum is now available in paperback!  I have been waiting (somewhat) patiently for my copy to arrive for a few weeks now.  I'm happy to say that it's here!  It's here!  

I've always liked to write and am so grateful to have as many platforms as I do to share my thoughts and ideas.  It was so neat to work on this project and to get a behind-the-scene peek at the publishing process.  Publishing took a great amount of time and work, but it resulted in a really neat product. 

My chapter, Mamacita's Unexpected Gift, begins on page 135.  My update of what's happened since the book was originally published can be found on page 306.

Next up:  to work on the manuscript I've been sitting on for over a year.  It certainly can't get published if I don't finish it, right?  Right!    

Dear Cat,

Get writing!

xo, Cat


Tuesday, April 21, 2015

Positive Thoughts

Good morning, sunshine!
I am not a morning person.  I tend to wake up tired and cranky.  Thankfully, the people who love me the most know this about me and forgive me.  

I stayed in bed a little bit longer when I woke up this morning.  I was tired as usual and wasn't ready to start the day.  Instead of getting out of bed right away, I thought about some quotes that I'd read last night.  I have a few favorite "go to" quotes.  Sometimes I read them for inspiration.  Other times, when I'm not looking for them, they'll pop up in something that I'm reading.   

My favorite quote, and one that has served as a mantra for me since Ronan got sick, is Lao Tzu's "The journey of a thousand miles begins with one step."  Others quotes that have brought me peace or that have helped inspire me are:


"A person's a person no matter how small." 
 - Dr. Suess

"The limits of my language mean the limits of my world." 
 - Ludwig Wittgenstein



‎"If a child cannot learn in the way we teach, we must teach in a way the child can learn." 
 - Dr. O. Ivar Lovaas

"Speak up for those who cannot speak for themselves..." 

 - Proverbs 31:8


I discovered that scripture passage from Proverbs a few years ago.  Speaking up for Ronan is something that I do daily.  It's what a lot of my friends do for their children, too.  When our children lost their ability to speak, we had to learn to use our voices to help them.  Finding my voice hasn't been easy.  But it's something that I get the chance to work on every day.  Something else that I'm working on every day is not being so cranky in the morning.  

I woke a little bit cranky and tired again this morning.  I wanted to stay in bed and not go anywhere. But we have things to do and people to see today.  Fortunately, soon after I was up and at 'em, I felt a moment of peace.  I felt that as I watched the sun shine through the stained glass Claddagh Ring that hangs in our kitchen window.  The peace that fell over me carried with it thoughts of thankfulness.  I was thankful that God gave me another day to try, to be ready for whatever comes my way, to put my worries aside, to accept the things that I cannot, and to change the things that I can.  I know that I can't tackle all of that at once.  But I also know that having just one positive thought and being ready to take just one small step forward (even when I'm cranky and tired!) is possible.  

One positive thought.  One step at a time.  The journey that I've started will continue. 

xo, Cat


If you have a favorite quote or a favorite scripture passage, share it!  I'd love to know what inspires you, too.  

Monday, April 20, 2015

Rewind

Ah, writer’s block.  You stink.  But today, I need to say thanks for the inspiration. 

I wanted to do some writing today but didn't know what to write about.  I looked though my writing folder this afternoon for some ideas and found this entry and the booklet I mention below.  I wrote this a few years ago.  As much as I’d like to have been able to fast forward to some sort of recovery by now, it sometimes feels like I’m in the same place and experiencing the same emotions.  The same emotions, the same struggles, the same worries.  They've stuck around.  But so does a lot of determination and a great amount of hope.  

I’ll never let go of that hope.


xo, Cat


I started writing about my son years ago.  Initially, I only shared that information with immediate family and close friends.  I was very private about what was happening because I honestly didn’t know what was going on.  Ronan had just started some therapy for some minor delays.  I wanted to find out why he was starting to have troubles, so I began intensely researching.  I visited several libraries and always found my way to the medical shelves in the library.  Stacks of books too heavy to lift always came home with me.  I’d fill the pages of those books with post-it notes bookmarking topics to further research.  I made endless lists too--lists of words and phrases to that I’d come across.  I’d never heard of them before and made notes to look them up.  I took a lot of notes and learned how to bookmark websites that I thought might aide my searches. You’d think I was in pre-med with all the literature I was reading, recording, and forwarding to our immediate family and friends.

My husband encouraged me to write down a little bit of what I had discovered for other reasons.  He wanted us to be able to give Ronan’s story to anyone who asked us questions because it was clear that something was wrong with Ronan's development.  Ronan could do some things like a typical child could, which we were thankful for, but he had behavior issues and developmental delays that scared us.  Since retelling Ronan’s story over the phone or in a quick email was taking longer and was getting more complicated, it made sense to document everything in one place. 

I’d studied child development in college and had a successful career as a teacher in elementary classrooms before we started our family. I’d only taught typically developing children during my career.  Ronan’s lack of development truly puzzled me, but I was determined to find out what happened to him.  

Over time with all the reading I was able to do, I finally had my a-ha moment.  I discovered that Ronan’s vaccines contributed to some of his delays.  At first, after I wrote everything down and confirmed what I could while cross-referencing medical literature, as well as Ronan's medical records, and I couldn’t believe what I was reading.  But, it all made sense. Ronan was vaccine injured. 

I’d never heard of vaccine injury before.  It sounded far-fetched.  Surely that couldn’t happen to children.  Could it? 

The only information I knew about vaccines was that I’d had them as a child and that I’d opted to get them for my own children.  Once I took a step back and let all of the information I'd researched sink in though, Ronan’s out-of-the-blue sicknesses weren’t really so out-of-the-blue.  The small changes from his slow and steady progress to the tumultuous regression he experienced was clearer.  The agonizing irritability that normal babies were just not supposed to have but Ronan did couldn't be ignored.  When I looked at the shot record and the descriptions of Ronan’s reactions to those shots and to when he had them, well, that was vaccine injury. 

It all made sense. And sadly, vaccine injury could happen to children, children just like Ronan.  

When I made that conclusion, when I was able to connect all the dots, I started to ask other parents about vaccine injury.  Some parents had heard of it while others had been able to spare their children from it.  Local friends could only help so much, so I reached out beyond my comfort zone and joined message boards.  I also learned how to navigate the internet better and searched scientific journals.  I scoured health news websites and continued to check out medical books.  I read as much as I could and made it a point to share as much relevant information as I could with family and friends.  

Friends and family remained interested in my latest discoveries.  They were always excited to hear that Ronan was able to make some gains in his development despite being so sick.  I owe it those who people who checked in on us, who offered comfort, and who offered advice during those early years.  Those years were very difficult.

Support for us, and especially for Ronan, was offered by many people. It helped to have a group cheering for Ronan as he worked though his major delays and as I worked through the emotions I was experiencing. 

--The Booklet--

The original story I put together included Ronan’s history with a list of helpful links and resources.  I thought making it and sharing it would be a gentle way to break the news to everyone who remained interested in Ronan's story.  The booklet was also a means for me to share that most of what happened to Ronan could have been prevented.  

Now that friends and family they knew what we knew, we hoped that they could make better decisions than the ones we did about certain medical treatment options.  The biggest message we sent, besides asking for continued prayers and support, was to ask those we loved to educate themselves before they vaccinate.  Please.  They’d already heard that message with previous emails and phone calls from us.  I was starting to feel like I had to have a permanent soapbox attached to my feet as I shouted medical statistics and health-related information.  I kept doing that because I didn't want anyone to go through the issues we were having if they could have avoided it. 

We shared the booklet with some people, emailed it to a few more, and then forgot about it while trying to keep up with Ronan’s on-going medical needs.  That was way back in 2006.  Life has changed drastically as we have gone from one doctor to the next, from a simple diagnosis of globally developmentally delayed to much more serious ones that I don’t fully understand. 

I stumbled upon that old booklet file on my computer not too long ago.  It was during a writer’s block moment that I found it.  That moment included me panicking about telling Ronan’s story.  When I was asked to contribute a chapter for a book I was all for it.  I love to write!  I love to help people!  I love to teach others and to share Ronan’s story!  It sounded like a perfect opportunity.  But then I honestly couldn’t figure out where to start writing my chapter because I don’t know how Ronan’s story will end.  Every story needs a beginning, a middle, and an end.  

I know the first two parts of Ronan’s story fairly well, having lived through the beginning and now experiencing the trials and the joys of the middle of the story right now.  But, the end?  I hope the end is a recovery, a healing, a burst of typical development leading to more typical development and independence.  It’s difficult sometimes to think about how to achieve that yet alone write about it! 

I know how I want Ronan’s story to end—with a full recovery, with all of the struggles behind me and behind him.  I want him to be able to play with his brother who desperately wants to share his LEGOs.  I want to hear Ronan talk and to ask questions instead of being surrounded by frustration and silence.  I want to see Ronan grow up and be happy, healthy, and independent.  But, Ronan is not near that point yet.  Lots of work, and maybe just as many years that have already passed, are between now and recovery. 

While brainstorming for that chapter, I went back to that writing folder and opened that old booklet file and relived the hope of what I had written years earlier.  It looked so sweet and quite short compared to the time it took to realize that something was wrong with my son.  Funny enough, rereading that booklet made me laugh.  I thought it was such an epic tale at the time.  It even had appendix pages!  Cute pictures of Ronan adorned the pages to remind whoever read it that hey, this kid is cute!  And, sure he’s a cute kid, but Ronan is also so sick.  I didn’t realize at the time how very sick my child was.

--Cat Tale--

Ronan’s story is much longer than that short booklet that stayed tucked in my writing folder.  The story of how sick he is continues despite how desperately I want the tough parts of the story to end and how desperately I'd love to add a happily ever after ending. 

I’ve continued to write about Ronan for several years now with much of my work showcased on several blogs.  Of course family and friends are still receiving Ronan’s updates, but my thoughts and ideas now reach many more people.  Readers want to know that I have am hopefully ever after looking for Ronan’s recovery.  They like to hear that Ronan is growing up and is able to do more despite his delays.  

In my writing, I voice concerns that I have as a parent of a child who faces possible life-long disabilities.  Through the connections I've made with others, I’ve found with quite a few other parents like me.  They are a determined bunch.  Through the years of reading and through the many contacts I’ve made, I continue to reach out to other families who have also made the same awful discovery that I did—that vaccines did something to change their children’s health.  Never in my wildest dreams did I think I’d be a part of a movement whose goal is to fix a broken health care system and to address politicians about the broken health care system!  But I have witnessed all of that and more thanks to the people I have met because of Ronan. 

When Ronan lost his voice around the same time he got sick, my voice grew stronger.  I am grateful that I can stand up for Ronan and his needs.  Someday, I hope that when I look back at my writing folder, I can flip through some of the entries that have painful topics and not be so affected by those topics.  Those topics are important to share, but the ones I’d like to revel in are the gains.  Wouldn’t it be great if we could just fast forward through the past and jump into a future where only gains are attained?  Yes, that would be nice.  I know that's not how life works, though.  

For now, I'll work in the present, and I'll continue to write.  I'll work with what I have.  I'll work with what I know.  I can never completely ignore the past for it's what got me here today.  But I promise, no matter how much pain the past has caused, I will work hard to set my sights on the future.  



Wednesday, April 15, 2015

Brotherly Love

I forget that my kids sometimes hear the conversations that my husband and I have about Ronan.  In the past, we've refrained from telling the kids certain things that we've learned at Ronan's medical appointments.  Some of the information is just too much for them to handle.  But with how busy our schedules have been lately, conversations about Ronan and his growing medical needs are made out in the open.  Instead of behind closed doors, we're discussing everything at the dinner table in front of the kids.

They know that they can ask us anything and that we'll answer them honestly, but for the most part, the kids have stayed quiet during those conversations.  With how intense the topics have been lately, I know it takes time for them to process what they've heard.  Sometimes, it will be days and days later that one of the kids asks a question or offers a thought about what they heard.  But, oh, what insight! 

The latest dinnertime discussion the kids heard was about two weeks ago.  It was regarding the neuropathy in Ronan's legs.  That news really rattled us.  It really rattled Ronan's siblings too.  That night, the kids quickly offered to help their brother.  They brainstormed some ideas of what they could make to help Ronan before further atrophy occurs.  They asked if we could get a scooter (tricked out of course), a pool (with slides and a splash pad), and a service dog (who they'll teach to gently nudge Ronan when he needs help).  

We said no to the scooter (but are actively looking at walkers with the PT), no to the pool (we'll get passes to the one down the street), and not now for the dog (as much as we think we are ready for a dog, we are so not ready for a dog).  Little Buddy then asked if he could invent robot legs.  We said go for it.  

Out of the blue, while we were at the doctor's office yesterday, Little Buddy asked me, "Mommy, when will Ronan's legs stop working?"  Holding back tears, I told him that we're going to do everything that we can to keep Ronan active before anything more happens to his legs.  I told him that we can all encourage Ronan to walk, to climb, to swing in his swing, and to move around on his own.  I also told him he can always pray for his brother.  I know that he already does that.  Little Buddy and his classmates pray daily for Ronan.  

Since it had been a few weeks since we'd discussed the neuropathy I asked Little Buddy why that thought crossed his mind.  He told me it's because he wrote a poem about Ronan a few days ago.  I asked him if I could read it.  He said sure.  


Ronan

Movement in my brother's legs is going,
That's bad for a kid who's barely growing.
All this,
Without him knowing.

He cannot talk,
Soon won't walk.
If that's not enough,
He already can't do a lot of stuff.

A dog is what we'll get
For him to stand up straight, 
To keep as a pet
Then things will be just great.


I cried both sad tears and happy tears. Little Buddy turned a sad thought into a hopeful one.  With a reminder that the kids really, really, really want a dog. 

Someday, kiddo.  Someday.  

xo, Cat


Wednesday, April 8, 2015

Follow-Up

Follow-up appointments can be informative.  From getting a diagnosis to creating a treatment plan, these appointments are usually scheduled soon after an initial appointment has occurred.  For the last few years, I have been calling all of Ronan's medical appointments follow-up appointments.  I probably should refer to them on-going rather than follow-up.  Depending on which specialists he's seeing, he's logged ten year's worth of follow-up visits.  

Ronan had another appointment last week.  That appointment was about the problems he's having with his legs.  At the rate things are going, more appointments - and follow-ups, will be scheduled.  That'll happen for a few reasons.  

Ronan's orthotics aren't working.  

He continues to be in pain - pain we haven't been able to take away.  

And he's slowing down.

After sharing our recent observations--that things don't seem to be improving, Ronan's doctor and I talked about our options.  We talked about pain meds, different orthotics, and getting the most out of physical therapy sessions.  We also discussed how to conserve Ronan's energy.  In trying to conserve Ronan's energy, it was suggested that we consider having Ronan use crutches or a walker.  

A walker.  That made me immediately think of this picture.  
Before he could walk on his own
Ronan didn't learn to walk until he was close to 3-years of age.  When looking at when that typical milestone is usually achieved, being almost 3 is old for kids to learn how to walk.  

It took time for Ronan to be able to walk on his own, but with practice, with physical therapy, with that walker, and with lots and lots and lots of prayers, Ronan did it.  

Using that walker was a stepping stone.  A curious toddler, it helped Ronan to get up and go.  It gave him confidence.  Independence.  And freedom.  Things are different now.  

Ronan's not as confident as he used to be.  He's sitting down more.  He's laying down more.  Instead of zooming from one room to the next, he's reaching up for me to hold him.  He's signing for me to help him.  He needs me to carry him.  Ronan's been signing ouch while pointing to his legs, his thigh, his calf muscle, and to his feet.  We need to do something now before further deterioration occurs.  My husband and I had already thought of getting a walker for Ronan, so we're grateful that the doctor agreed that it's something we should look into.  It's our hope that Ronan will use a walker as soon as it arrives.  We need a smooth transition.  No sensory issues.  No anxiety.  No struggle.  

Instead of helping him zoom here and there, a walker will be used to keep him upright.  To prevent him from falling.  And to support him as he slows down.  Watching Ronan slow down has been difficult, but I'm grateful to have some options.  I'll have to schedule a follow-up appointment on my list of things to do this week.  At the appointment, we'll see what Ronan's most comfortable with and make sure we get the right piece of equipment for him. 

Follow-up can imply that it's just 'one more appointment'.  That's not been the case for Ronan.  For Ronan, it's been one series of appointments one right after the other.  It's been that way for some time now.  

Follow-up.  

On-going.  

Recurring.  

However many appointments it takes.  If they help Ronan.  If they ease his pain. We'll keep making them.  

xo, Cat



Friday, April 3, 2015

Subscription

You subscribe to that?  Really??

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

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

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

So, Ronan was typical at one point? 

When did he change?

What did the doctor do?

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

For each question asked, I offer an answer.

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

Ronan changed over time.  

The doctor?  Oh, we got the let's-wait-and-see attitude.  When Ronan was still struggling, we got the boys-are-slower-than-girls excuse.  

Yes, I can trace it back to something.  After each vaccination, some *thing* happened...

Before I could finish that thought the last time it was part of a conversation, I was interrupted.

“Wait.  You think it was vaccines?  You subscribe to that?"

Without hesitating, I replied, “Yes.  Yes, I do."

“Really??"

And then I got the look.  I’m used to the condescending look, but I still don’t like seeing one shot in my direction. 

I continued. 

“Yes.  Vaccines did some *thing*.  It was shocking for us to learn that.”

The look, that look, stayed on his face.  I added, “If you’d like to see his shot record and a medical timeline of what problems started when, I can show you.” 

“No, no…I, uh, don’t…so.  The vaccines?  You know they’ve done so much for modern health care.”   

Clearly we were in different camps. 

I wanted to respond with, “Oh, I know all about what vaccines have done,” but I held back.  Through his non-verbal communication – the look, the disbelief, the now folded arms, I knew our conversation could go one of two ways.  It would either fizzle into an awkward, “Well, um, thanks for sharing,” or it would turn into a debate.  Not wanting a debate, I steered the conversation into another direction. 

“Yeah, so that’s what’s going on with Ronan.  It hasn’t been easy.  He’s got more medical issues now than he did before.  His therapy, the frequent doctor’s appointments…it’s tough.  But, gosh.  We do everything we can for him.” 

The gentleman looked around and sipped his drink.  I could tell he was planning an his exit strategy.

He raised his glass.  It wasn’t a Cheers to YOU, Cat! sort of gesture.  It was a reason to walk away. 

Looking at his glass and then at me, he said, “Well, Ronan’s a lucky kid.” 

“Yep.  He sure is.” 

"I’m getting a refill…do you want one?”

“Nope.”  I smiled.  “I’m all set, thanks.”

As he walked away, my smile faded.  I repeated his question in my head, “You subscribe to that?”  I do.  I do because I know what I saw.  I do because I can confirm what I saw because of the reactions Ronan had.  Some people don’t want to hear that.  They refuse to see it, too.  As much as I had thought that telling Ronan’s story would make a difference for that man, it didn’t. He and others have their reasons for not wanting to hear it, for not wanting to see it, and for not “subscribing” to it.  

We don’t all fall into the same camp because we each have our own opinions.  People have strong opinions about certain issues: religion, politics, money.  And also vaccines.  We focus energy on issues we feel most passionate.  My energy will always be focused on Ronan.  For Ronan, and for the other children whose parents also subscribe, I’ll continue to do whatever I can to help. 

xo, Cat