Thursday, March 18, 2021

Trisomy 18

Two months, it's been almost two months guys since I last wrote.  I was thinking it had only been one, which is still too long.  But here it is, March 18, Trisomy 18 awareness day.  

Trisomy 18, incompatible with life, lethal, vegetative, non-responsive.  Yeah, not this kid.  

Someone forgot to tell him what he's "supposed" to be.  

Instead, he's full of life, goofy, silly, and growing.  

Aaron attends a special school for severely disabled children, ages three through 21.  It serves the most fragile and complex children.  And they would like him to move on.  Move on because he is doing school work that is beyond what they usually see.  Education is supposed to place children in their least restrictive environment (LRE) so they can progress to their fullest ability.  A big part of his last IEP (individual education plan) was spent speaking about how we can help him move forward.  

If it weren't for this stupid pandemic (yeah, I hate it too), he would have started spending time at the grade school behind his school for part of each day.  Absolutely not happening anytime soon.  But we spoke about having him Zoom in for library time, or other activities.  Ideas are being brainstormed.  This kid is going places!  

Will he ever go to college?  Nope.  Will he ever perform on the same level as his typical peers?  Not likely.  But is he learning and developing and using that brain of his?  ABSOLUTELY!!  

He has also inspired me to work harder.  A year plus ago, I was musing out loud about pursing a masters degree.  Someone reminded me that I could chose to do it, or not, and I would still be the same age either way in three years, so I started looking into it.  There's a university close to here that has a hybrid program that fits what I need.  I need a schedule, I need to be kept "on track", and this one is mostly online but Fridays on campus.  So I started on the pre-requisites and completed an application last fall.  I have finished one of my classes (that one was HARD!) and am almost done with the next two, and will start a Masters of Social Work in August.  

This child, this growing, learning, thriving boy, has had such a huge impact upon my life and the lives of so many.  

Trisomy 18 awareness day.  Know it, spread it, embrace it.  

“Don’t wait for the stars to be aligned. 
Reach up and rearrange them in the way you want. 
Create your own constellation.” 
Pharrell Williams