I haven’t written for a really long time. I stopped telling our story. I allowed fear to paralyze me. I let online bullies silence me.
But I shared my heart over on Facebook earlier this week – about this hard and holy journey we’re on – and someone spoke words of encouragement. They told me to keep sharing our story. It made me want to put words on a page again.
Maybe nobody will read them; but maybe somebody needs them.
“Your child has a very rare genetic disorder called 9p23. This disorder can cause children to have Autism-like characteristics, but they don’t meet the requirements for an Autism diagnosis.”
This is what the genetics doctor told us a few years ago after we had seen many, many specialists. A neuropsychologist also confirmed that our son doesn’t meet the criteria for a formal Autism diagnosis.
Often times it feels like we’re floating around in this weird grey area, not really sure where we fit in the special needs community. Do I say/write anything about Autism Acceptance Month? Does my voice matter if my child doesn’t “technically” have Autism, yet has so many of the characteristics?
Stimming
Sensory issues
Food aversions
Delayed language development
Emotional outbursts
Obsessive behaviors
We had a really difficult day Tuesday. We’re in the process of moving to Michigan and we’ve been out of our routine and without a home for 26 days.
The first couple of days we were at my in-law house, my child ate nothing but Eggo blueberry waffles. He finally branched out and has eaten the occasional Happy Meal and happily shares gummy bears with his Dude.
On Tuesday we went to a children’s museum that was sensory overload from the moment we walked in the door. We stayed too long. That was my fault. We left and it wasn’t pretty.
We spent the rest of the day trying to recover. I felt like I had an emotional hangover. I can’t even imagine how my child felt.
My child may not have an official Autism diagnosis, but I believe I can still speak up.
This month is about acceptance.
Finding acceptance can be brutally hard for families of non-neurotypical children to find.
Heck, we’ve been shunned and disowned by fellow special needs families.
There are very few people in our lives who accept Jackson just as he is.
They don’t flinch when he hums to calm himself.
They cook the frozen square cheese pizza when we’ve ordered pizza out.
They buy the right brand of chocolate milk.
They let me cry without judgment because this journey can be so, so hard.
Acceptance.
I think that’s what most Autism families and other special needs families crave more than anything.
I know I do.
For others to see the amazing, hilarious, kid that works harder than anyone I know, to make it in a world that isn’t easy for him.