“The world needs to be more accommodating for my child.”
Many of us have this same sentiment for our children.
We will advocate until we’re blue in the face.
I have a child who requires many accommodations and supports, who requires several different specialized programs and therapies and needs advocacy for both.
And that can be hard.
But do you know the hardest part of parenthood for me?
Not only NOT being able to always accommodate my special needs child, but asking that child to then MAKE accommodations for his brother because his brother CANNOT make ANY accommodations for him.
This is often the dynamic of my boys.
Along with ADHD, an intellectual disability, and general anxiety, Jonny also has a rare genetic condition called Kabuki Syndrome, which is characterized by skeletal-muscular abnormalities, multiple developmental delays, and can present with autistic-like tendencies.
Jonny has a lot of “issues.” He has anxiety triggers. Meltdown triggers. Food aversions. Textile aversions and sensory “overload.”
Among other things, he cannot abide Jonah’s anxiety or Jonah having a meltdown around him.
But, Jonah was diagnosed with Autism (level 3 – severe).
He will sometimes get anxious and he will occasionally have meltdowns.
One thing that triggers anxiety in Jonah is when Jonny is unhappy.
But Jonny is “unhappy” any time Jonah is having anxiety or a meltdown.
So the boys will trigger each other. Jonny won’t be able to tolerate Jonah’s screaming and Jonah will be screaming “I want ‘Bubba’ (Jonny) is happy!”
A singular meltdown in one boy will almost ALWAYS turn into a dual meltdown for BOTH boys.
During the pandemic, it got so bad, the boys couldn’t even ride in the same car together.
“Why is Jonah upset?”
“He just wants you to be happy, Bubba.”
And Jonny, bless his heart, recognizes the situation and does his best to mask his own anxiety and “pretends” that “Bubba is happy!” to prevent Jonah from having a meltdown.
Even though Jonny needs to be accommodated, he makes accommodations for his brother at his own expense, because his brother physically CANNOT accommodate him.
Being a parent of multiple ND kids has taught me this:
It’s not fair. Life, that is.
Sometimes, someone who needs accommodations will not only NOT get them, they will be asked to MAKE accommodations for someone who needs them more.
And in a world of advocating for our own kids, that is a hard truth for many parents to even understand.
Someone will ALWAYS need more accommodation.
How do you respond when it is YOUR CHILD asked to make them?
I mean, if there were multiple ND kids playing in a preferred play area, would you ask one ND child who has an aversion to loud noises to make an accommodation for another ND child having a screaming meltdown?
Or what if one child’s stimming triggered another child’s anxiety?
They BOTH have a right to play there. Should one or BOTH have to leave?
Here’s what parenthood has taught me:
Don’t assume that “the kid” who won’t accommodate your child is a typically developing child.
…because the person you are asking to make accommodations for your child, might actually need them just as much, or even more.
#Ausome