Clouds, May 2010

Clouds, May 2010

Wednesday, November 23, 2016


This month marks a milestone that I knew nothing about for the first seventeen months of parenthood. Ten years ago in November of 2006, our expectations would be changed forever & a diagnosis meant our lives would never be the same. 

I do (but don't) wish I had a picture of the script that the pediatric neurologist wrote, which was filled from edge-to-edge with the names & codes for the number of different tests that the lab would need to run with my child's blood samples. We all knew Hayden had global developmental delays but none of us knew why. 

Everything from that year ended up in a binder-- assessments, evaluations, appointment notes, & so forth. Out of curiosity I recently flipped through it to count how many different clinic, hospital, or other logos I could find on the various letterhead. Post-diagnosis, there were more than twenty in the first year alone. 

I am not thankful for the fragile x gene itself, & what that means for us on a day-to-day (or sometimes hour-to-hour) basis. I am not thankful for what this gene means for my son & his quality of life which unbeknownst to us was compromised before he even opened his eyes for the very first time. And for those who have walked in similar shoes you will understand when I say I didn't want to be welcomed to Holland in any sort of figurative sense & the tulips are not going to make it better. I still go through small phases of mourning & I know I always will.

I am not thankful for fragile x syndrome because I know how aware Hayden is of the growing developmental gap between himself & his peers. I hate that this gene mutation forces his toughest moments to be on display for everyone to witness, because the biology of what is going on inside his body is stronger than his ability to fight it. The absolute worst behaviors steal the very best of him & this breaks my heart, because he is actually one of the strongest people I know. His strength is evident in his accomplishments, the genuineness of his smile & the tenacity in his eyes. So no, I am not thankful for fragile x interfering with that.

But I will say something else. After a decade of all this sinking in, & some hefty doses of reality that I am not always thankful for, we have also had some strong doses of gratitude along the way. Ten years, ten examples:

Many who have worked directly with Hayden at some point or another, are truly second to none. In a world where there are way more patients than there are providers, & the number of retiring experts is rarely met by adequate graduates to fill their shoes... somehow we have been paired with a number of people who are worth their weight in gold.

Often these incredible people who have been a part of Hayden's program in the past by assignment, also remain a part of his life moving forward. By choice.

And speaking of moving forward, it feels really good having a truly incredible charity to rally around.

Especially such a foundation that turns opportunity into empowerment by offering mutual support annually. 

Speaking of advocacy & all the other necessary roles which define parenting a child with special needs... it's not the worst thing in the world to discover you're really good at something. Even more so at a time in your life when you certainly did not anticipate such profound learning.

And despite the moments when you want to sit in a corner & sob, deep down you know you kick ass when it counts.

It's not about the lab results, even though a diagnosis is responsible for introducing most of us. It's the unparalleled community dedication that holds everyone together.

The opportunity to build strength out of something that is literally labeled fragile.

We don't overlook anything. Detail oriented? Yes. (You have no idea.) But what I really mean is that we inevitably appreciate successes more than we possibly could have if our child didn't have to work so tirelessly. I know what it's like to damn near burst with pride over each achievement & the feeling is indescribable.
And the very best dose of gratitude... the select ones (outside of the fragile x community) who DO see your kid the way you do. They respect him with all of his differences. They admire him for his determination. And they're grateful Hayden is a part of their life. But most importantly they make sure he is a part of their life

I am not thankful for fragile x but that gene will never have enough power to break my gratitude when & where it counts. 


Saturday, November 12, 2016

accounting for awareness

I saw The Accountant Movie which I heard fragile x was mentioned in. Now that I've seen it out of curiosity I also wanted to look up more information. Came across a few interviews which are quite interesting, especially Ben Affleck's research to play a character who is on the autism spectrum-- albeit very high functioning*. Since autism is a spectrum disorder there are many people who are much more cognitively impacted than others. Another side note, in the movie (& elsewhere) *this form of autism is referred to as Asperger's. Currently the medical community is continuing to shy away from that label, & instead using a level 1 diagnosis on the autism spectrum. 

The mention of fragile x in the film is during a phone conversation which I would guesstimate is at least half way through the movie. No major spoiler alerts here at all, so don't worry...
But there is a woman in the story who works for the government in a technical capacity as an analyst, & one of her superiors ultimately coerces her to investigate this accountant. Among the evidence is an audio file which is dissected & examined for clues, & she ultimately uncovers a barely detectable fraction of a segment when you can hear a man verbally stimming. Although her character does not realize what it is, this does stand out so she pursues learning more.

Just to offer a bit of information, though-- speech stimming is different than perseveration because the latter is more accurately defined as continuing to utter something, even after the stimuli which prompted it is no longer there. Whereas stimming is the self-regulating repetition. When the woman in the movie is on the phone & asks about that particular sound clip, the person she is speaking to explains that it is stimming. He says this type of stimming is speech repetition with maintained intonation, & is most common in people with conditions such as fragile x syndrome or autism. She then says something to the effect of... how can you tell... & the man on the phone says that with fragile x there is often an elongated face, enlarged ears... whereas autism can be nearly undetectable. (Not that exact wording but that's essentially what they were saying.)

One thing I would like to clarify is that although there are many people with fragile x syndrome who do have some distinguishing physical characteristics, there are also many who do not. These are among the reasons why fragile x syndrome & autism are often referred to as hidden disabilities. As far as individuals with fragile x who do have some of these traits, there are many who have these attributes from birth & then some who develop them much later during puberty. But again, not everyone will have an obvious outward appearance.

A more accurate discrepancy in the specific context of this movie would have been the intellectual component. So in the movie as fragile x & autism came up when she was investigating the accountant, you would not default to autism because of the lack of physical characteristics. But rather the level of such high functioning that the accountant has could definitely be consistent with someone who is also on the autism spectrum.

I don't know that people would walk away from the movie even remembering that fragile x syndrome was the name of the other condition the man on the phone mentions. And if by chance they did, it is highly unlikely that more than a few might take it a step further to research. But since the awareness is out there I would still consider that a good thing.

There are a number of very difficult scenes in the movie but one seemingly less significant moment that got to me the most, was during one of the many flashbacks to the childhood of Ben Affleck's character. I can't specify the context of the scene because that would be a spoiler alert. But what's going on is that due to the environmental circumstances making the child feel unable to cope, he is spiraling out of control. The father stands behind his son & puts his arms around him-- with much difficulty as the child is thrashing & resisting-- but you literally witness how he also begins to return to a centered state of mind. The input that the father is giving his son is called proprioceptive (pro-pree-o-sep-tiv). One of the easier definitions of this is relating to stimuli connected with the position & movement of the body. Proprioception refers to overall body awareness, so the proprioceptive input is effectively helping the brain regain control of the body.

This was heartbreaking for me to watch because I understand too well how easy it is for the child's reaction to be completely misinterpreted  by the outside world-- & not at all understood as the involuntary neurological response that it is. And furthermore how difficult it can be for the father to be able to give him this input, let alone without anyone getting injured. For at least a couple of years now Hayden has been getting too tall & too strong for me to safely assist him in that way. But watching that unfold on an enormous screen for everyone to see... it's exactly what Dan has had to do countless times, & I felt completely empathetic to what was happening.

This is not an educational movie by any stretch of the imagination, but there are a number of scenes which prove someone did their homework (& other scenes that were quite worrisome). But since it is so uncommon for fragile x to have the spotlight, it was positive to see those couple minutes of awareness on the big screen.

While the advocate in me wants to stand at the exit after every showing with brochures, more realistically I just hope people check it out!

For more information about fragile x syndrome as well as fragile x- associated disorders, &/or the connection between fx & autism, please visit The National Fragile X Foundation via any of those links.  


Wednesday, November 9, 2016

please rise

When Hayden said good morning to me I said it back with a smile.
I am not a morning person (at all) & I also voted for Hillary Clinton. But the only thing that Hayden knows is that it's Wednesday morning & he was happy to get ready for school. 

But while I was cooking his breakfast my mind was still absorbing the shock of this new reality. I know the country & the world is somewhat dumbfounded but I started to smirk. Because in the wee hours of the morning (last night) the first bad joke that came to mind-- after I realized that Donald Trump was likely to win the majority electoral votes-- was I don't think Michelle Obama's remark was meant to be a prediction when she said, 'When they go low, we go high'... yet here we are & they've gone about as low as they can go, & after the end of this election, many more Americans can get high.

Then I thought to myself what is the best case scenario here? That something happens to him before or shortly after he is sworn into office? Not really because logistically that would make things worse. But I thought of the wall he used to talk about. And next thing I know I have this image of him sitting on top of it & in my mind I am reciting, "Trumpty Dumpty sat on a wall..." 
You know what comes next. 

Listen. There is no shame in feeling overwhelmed with grief, crying it out, dusting yourself off, & standing back up again. That is a healthy response to mourning. Personally, I am choosing not to be upset because I am proud that the most qualified candidate in history ultimately won the popular vote. I am proud I did not vote based on bogus sites pretending to publish factual news. I maintained maturity & I was not influenced by internet memes. But most importantly, I am proud I did not succumb to fear rhetoric. 

If our next President struggles to succeed, I will not point my finger at Trump supporters the way they have tried to demean my beliefs. If our next President succeeds in making appropriate decisions for the United States of America, I will enjoy a tremendous sense of relief. (Especially because this is someone who has managed to divide his own political party in a way this country has never seen.)

Either way I vow to accept this outcome with dignity & pride & perhaps, dare I say, in a manner that the opposition may have never mirrored. No one can change the fact that history was still made-- it has not been put on hold & Hillary Clinton has impacted that glass ceiling so it is far more frail than ever before. 

But I personally did not vote based on gender. I voted for the candidate who wants to continue to expand opportunities for Americans with disabilities. The candidate who also wants to support the millions of Americans living with autism. I voted for the candidate who wants to put an end to Alzheimer's within the next ten years. I voted for the candidate who believes that the wealthiest ought to pay their fair share in taxes. I voted for the candidate who believes that all Americans deserve to live their lives free from discrimination. The candidate who believes that we need to build an economy that works for everyone. I voted for the candidate who does believe as a nation we must fully commit to supporting our veterans. The candidate who said it is not enough to contain ISIS-- we must defeat terrorism altogether. 

America's overall decision was a noteworthy narrow margin which can not be argued or ignored. We must keep looking up & be in control of the fact that this is not defeat. This is motivation.

Let us consider the top major cities people think of in the United States: 
New York... Los Angeles... Washington... Miami... Philadelphia.
Clinton won them all. Including the entire NY/NJ/CT tri-state area on the east coast, & the whopping 55 electoral votes on the opposite coast in California. Different coasts with majority support for the same person. That's a bridge approximately 2500 miles long & that is a vision of success. 

I believe we will make it through the next four years & America will see very clearly in 2020. We will be the re-United States that I remain proud to call my home.