We are laying face to face and my right hand is cupped over his ear and my left hand is holding a blanket over our head so he feels safe enough to relax. Still yet, I feel his body jerk around uncontrollably and he breathes at a panicked pace. His hands make it up out of his weighted blanket and they start to play their own melody by his face that falls on deaf ears. His fingers make methodical movements but he doesn't want to nor does he control them. At one point he cups his hands together and asks me to cover his hands with mine to hold them still.
I do as he asks, always. Tears fall from my eyes.
It doesn't work and he eventually pats his stomach.
"You're thirsty?" I ask. He nods.
Of course, what 3 year old isn't thirsty at bedtime... but he isn't, not really. He needs oral sensory input. He knows I'll give him his water bottle with a straw. We are now out of bed so I ask him if he needs a PJ change but he says no. Instead I change his diaper and he starts to fidget with his mouth so I hand him what we so lovingly call his "chewy", one of his oral motor sensory tools he uses to satisfy what he perceives as a lack of oral motor sensation... which is enough to throw off his bedtime routine. He climbs into his swing with his chewy and I set his beloved weighted dog Shelly on his lap and start to swing him.... but not without simultaneously reading him a book.
The routine can feel long and ridiculous... but without it, the nights are even longer and more broken up. We climb back in bed, in the same position as before but with my hand back over his ear. This time, he is asleep within five minutes. I free us from the blanket over our heads and eventually take my hand off his ear.
I don't move. I just lay there and stare at him in these quiet moment where he is seemingly at peace.
It's in this moment of peace that I cry the hardest.
My son is not neurotypical, he has special needs.
Emmett has a Sensory Processing Disorder (mainly a seeker), or SPD, and his behavior is often misconstrued to those who don't know this.
I am a special needs Mom. It's been 6 long months of growing into my new role... of understanding something he has struggled with alone for the 3 years prior.
How is he ever going to go to school? They won't understand him.
How will he make friends if he is seemingly loud and overbearing?
How will they know what he needs if I'm his mother and I can barely understand it myself? It's sucking every last ounce of the energy I have to gather these puzzle pieces and make sense of this.
People who don't understand him will probably punish him where in fact his brain is just simply not communicating with his body like everyone else's is.
They won't understand that his world is unbearably loud.
They won't understand that sometimes he feels like he's floating in the air and needs to crash into things in order to feel like he's on solid ground.
They won't understand that when he feels like hes disjointed he seeks to be wrapped up tightly in someone's arms to be put back together again.
They won't understand that he might fall off his chair while trying to sit still because he can't feel grounded and easily looses his balance when he's not moving fast and hard.
They might think he's just being picky when he won't eat but a handful of foods and insists everything be white. They haven't had to catch the food falling out of his mouth that he gags and chokes on simply because of it's texture. They didn't sleep on the floor of his hospital room after a choking incident or perform the Heimlich on him when he turned blue.
They will think his meltdowns are tantrums.
They won't understand why he's loud or why he doesn't often respond to his name.
His peers might not have the patience with him that we all have learned to have. When he comes crashing into play and knocks everything over that you had just set up, his peers will not calmly say "It's ok Emmett," like his big sister does. She knows he can't feel his body and she has quickly learned not to take anything personally.
SPD is a puzzle.... without a definitive shape.
Without edge pieces.
Without a picture to follow.
Without a DSM diagnosis.
Without proper insurance coverage.
In the past six months we've been to more than a dozen appointments with specialists.
Some ruling out physical issues... can he physically hear us?
Some surgery... after his adenoid removal he whispered for the first time and I cried.
5 evaluations.... one being at the Wisconsin Early Autism Project where they told me he exceeded qualifications for Autism on the behavioral side but they were still unsure on the social side because he "sometimes makes eye contact and socializes with his sister and some adults".
"There's definitely something going on and I know it must be really hard, so I hope you figure it out and are able to find the help you need. Come back in 6 months for a re-evaluation."
For you, Emmett, I will fight.
When the world can't hear us, I will stand on top of the chaos and I will be your voice.
