week three

We're only in the third week but today was the first time that the teacher note in the communication journal wasn't overflowing with praises. Still positive in overall tone, but also inclusive of recaps during a couple of Hayden's fragile x moments. One incident at lunch which unfortunately involved another student, & a second incident in the afternoon (thankfully not involving anyone else). The teacher explained what happened next & how Hayden calmed. Worth noting that Hayden's 1:1 has been absent this week & I am sure that has had an effect on him (among everything else in his world in recent months... it's just been one whirlwind after the next for all of us). 

However also noteworthy, even after his less-than-ideal day-- while communicating with the school about something else-- the Principal actually said, "We are the blessed ones to have Hayden with us every day!"
Of course I read that & my face looked something like this (with a lot more hair):

Truth? There are some logistics to our new reality that suck. But if I had only one thing to say about it so far... they have truly begun to renew my faith in humanity & restore my expectations to help Hayden succeed. In the not-so-distant past H came home from his former school following a similar type day, & told me he had another "stupid meltdown again" & that they had to call a code green. No disrespect for certain procedures to protect the greater good, but I am Hayden's mom first. And nothing can stop the SICK feeling every time I hear his voice in my mind, uttering those words to me. In that moment I felt like it took every ounce of my willpower to look Hayden in the eyes without my own welling up... but that's what I did & I said to him, "You did not have a meltdown, you have fragile x. And where you are going, there are no codes." 

The best way to reinforce difficult behaviors in a person with cognitive impairment, is to make them feel like they are the problem. The best way to reinforce positive behaviors? Create an environment they can feel comfortable in. That is what I will remember about today. Not a meltdown, or a fragile x moment, or heaviness in my heart. But rather the day when the teacher said overall it was good. And then the Principal told me my son is a blessing.

Do you know what Hayden told me about his day today? That they rode bikes in the gym. That's not code for anything except a happy kid.

--

light bulb

You can post it, say it, wear it, or light it up blue. You can flash your colorful puzzle pieces & catch phrases. But who isn't aware of autism at this point? What I mean is we don't hear people say, for example, that their loved one has been diagnosed with a condition called autism... & then wait for them to elaborate with an explanation of what that means.

Awareness is at the root of understanding & is therefore crucial. But at this point a societal move towards acceptance is long overdue. Progress needs to go beyond movie theaters with sensory-friendly screenings or airport programs with special accommodations for people on the spectrum. People living with autism spectrum disorder (ASD) are not characters on a prime time TV show, they are human beings trying to function in a world that has a lot of room for improvement when it comes to understanding their needs.

Autism is called a hidden disability because it is not immediately apparent. And by that description fragile x syndrome (FXS) falls under the same category. While one is a behavioral diagnosis & the other a genetic condition, they are both spectrum disorders & many of the associated challenges overlap. Other hidden disabilities can be visual, auditory, psychiatric, or seizure disorders to name a few. 

Both ASD & FXS can cause behavioral challenges, difficulty communicating, global developmental delay, & sensory processing disorder. Both can affect sociability, speech, & sense of empathy (either under expressed or heightened). Both disorders often cause repetitions in behavior & reinforce an inherent need for familiar routine.

They are autism & fragile x-- described by many as different pieces within one puzzle. While most people are familiar with ASD, they do not realize how it is scientifically linked to FXS.

Fragile x syndrome is the most common known single gene cause of autism. 

If you know someone with ASD or FXS you're very lucky that you have an opportunity to understand a different perspective in life. Recognizing a date on the calendar reserved for awareness is a great start, but the reality doesn't go away the other 364 days of the year. I hope more people make an effort to turn their awareness into acceptance. Be a participant in someone else's life & allow them the opportunity to participate in yours-- it's a simple reciprocal relationship just like you have with anyone else that you know. 

--