Clouds, May 2010

Clouds, May 2010

Wednesday, January 18, 2017

thank you for listening

I could not have imagined that my goal in life would be to facilitate better understanding between my son & the rest of the world. No one would wish for that.

While there are aspects of our life which will always be our business, I generally encourage transparency to help build as much mutual understanding as possible.  

People with fragile x experience a heightened sensitivity to everything around them, among many other challenges. But their senses are affected because they struggle from imbalanced neurological responses to stimuli. There is a term which best describes one of the most severe challenges of fragile x, & it is called hyperarousal. Hyperarousal is the psychological & physiological response to heightened (hyper) anxiety & altered arousal. So in other words Hayden's central nervous system is actually responding to his overwhelment & inability to control what is going on. This is similar to anyone becoming so overwhelmed that they say or do things they don't want to say or do, but in that moment they can not help it even though they know it's happening. This is multiplied many times over for a person with fragile x syndrome, because they are constantly battling their own biology just to respond to the world around them.    

Hayden is completely aware when he gets overwhelmed & he certainly does not want to feel that way, but biologically his nervous system lacks regulation. He might not even be able to follow through with the motor planning of simply walking away from a situation himself. And he gets so “stuck”, in every sense of the word, that it's also unlikely for him to appropriately communicate that he wants to be left alone. So the pressure of the situation is only going to further trigger his reaction. Because truthfully, what he really wants in these moments is for everyone’s attention to be diverted elsewhere. 

If you take all of that, & add in the basic difficulties that any person on the verge of their teenage years will start to experience, it's nothing short of a challenging recipe. But as a parent you do your best to help your kid do their best. And you're one of the lucky ones if your efforts are truly reciprocated by other people in your child's life. 

​​​​​Tonight, for the first time in longer than I can remember, my son went to bed early. I pray he sleeps well & finally gets a good night's rest. His schedule has been quite thrown with winter recess being unexpectedly flanked by even more time off school. As we work through all of this our friends & family continue to be the reasons we're still standing.

At last night's BOE meeting Dan & I had a brief opportunity to meet an incoming Principal. When I introduced him to my sister I said something about her coming all the way from NY to support us (again), & that you can't tell by looking at her but she wears a cape. I will also add the only reason one of my parents weren't standing beside us as well, is because they were entertaining the King. But I lost count of how many times they came to our rescue in the past couple months-- my mother joked at this point it would have been easier to just own property by us. 

I wouldn't wish this struggle on anyone but everyone should be so lucky to have this kind of support.

I was also encouraged to ask for an opportunity to speak to the Board. Long story short I never had a plan to do so on-the-spot last night... but they graciously accepted. So following the public session, my sister & Dan & I actually sat before them in a private meeting so I could voice our concerns. While I had no planned speech and nothing written down, & there were moments when my emotions took over, thankfully (to say the least) Dan or Jenna carried the points through. And the fact is-- excluding the minute or so that I covered my face with my scarf-- my little bit of bravery was met with a lot of heart. It was already late yet the Board stayed to listen without any advance notice, & for that we are incredibly grateful. 

As I said I could not have imagined that my goal in life would be to facilitate better understanding between my son & the rest of the world, but it's crucial because Hayden deserves much more than two sides agreeing to disagree. And the only thing more important than helping the world to better understand Hayden, is to first make sure that he is happy.

I'm relieved Hayden isn't aware of all the advocating we need to continue to do. But I hope he does know that even when he's only able to communicate through a behavior, we hear him. We managed to get everything he needed in order to progress in the past, & one way or another we're going to get it all together again. But in the interim we are further strengthened with so much support from family, friends, & members of the community. Please know that is doing something. While working towards developing a solution, it is truly a relief to simply be heard.