I pushed against the coffee Keurig, with almost all my weight, while my glorious cup of coffee brewed. When I stepped away, my friend asked, “Why do you do that?”
I looked at her, blinking and almost not understanding the question. Because it has become second nature to me, I don’t even realize I am doing it anymore.
“Because it muffles the noise,” I said. “It’s a sensory thing for my son.”
We have made many daily accommodations for him in our life, without even really thinking about it. Some big, some small. The thing about having a child who seriously avoids smells, noise and tactile input, is that they train you well. Meltdown after meltdown, you start getting desperate enough to do just about anything to avoid, or at least minimize the triggers.
There are so many examples of the everyday accommodations we make, without even thinking about it.
How We have Accommodated My Son’s Sensory Processing Disorder
1. Turning off the blinker in the car, when we are waiting to make a left hand turn, to stop the repetitive noise.
2. Double bagging any leftovers in the fridge to avoid any smell.
3. Lycra sheets.
4. Serving chicken drumsticks with paper towels wrapped around the bottom to avoid having to actually touch them.
5. Having sparkling water on hand all the time (because he can taste the minerals in every single type of water out there, and it gags him).
6. Lighting candles around the house in the morning to avoid any staleness or smells in the air.
7. Halloween Costume? Pah-lease. Don’t even think about it.
8. Buying an adult trike instead of trying, trying and trying some more to learn how to ride a two wheeler.
9. Skipping the park day if it is over 80 degrees (and often if it is below 80 degrees).
10. Buying stock in sharpie markers, because the sound of pencils and finer tipped pens on paper is excruciating for him.
I really could go on an on. When my friend brought up the way we “hush” the coffee maker, I started to think about all the things we do to accommodate sensory needs around here. The more I thought about it, the more I came up with.
And then, my heart ached when it dawned on me –
We didn’t used to do this.
Before we knew what was really going on with him, we used to try to force my little guy to get through it. We were sure that if we relaxed our “standards”, he would be spoiled and entitled.
You know what he was?
Miserable. Miserable, and in pain.
All. The. Time.
It took some of the worst moments of my entire life, moments when I was sure he might kill me, or his brother, or himself, or all of us – it took those moments to finally say, maybe we need to try to just give him what he is clearly saying he needs.
His occupational therapist helped – immensely. She helped us feel better about taking steps to calm his body down a bit, and she helped us figure out where it was appropriate to push him.
And, a year or so in, I cannot tell you how grateful I am for the changes we have made.
I am grateful that he is so much calmer and happier (and that the crazy meltdowns have become less and less frequent). Of course I am.
We were so wrong in our initial concern that he would grow spoiled and lazy.
The truth is that these accommodations help him participate more than he ever could before in our every day life.
He can have a playdate, even a noisy one, and manage it well. Why? He knows he can always retreat to his room and chill out in those lycra sheets when he needs to.
He rides that trike with us more than we ever thought possible. He actually ASKS to go bike riding.
He chooses to cook in the kitchen, because he knows he can open the fridge without being assaulted by smells the rest of us barely notice.
In giving him what he needs, he is much more willing to try new things and put himself in situations that he would’ve avoided at all costs a year ago.
He is more sure of himself, more independent, and capable.
Exactly what we wanted for him in the first place.
My “graduates” from occupational therapy tomorrow. He has met every single goal we set for him at the beginning of therapy – by far. We will have cake and give his OT a card and flowers. I know I will cry. I think she might too.
She calls him one of her greatest success stories. A boy who came to her locked up inside his own body, can now move freely in the world and advocate for himself and his needs.
We will celebrate it and then she will move on to another client. We will take our limited funds and invest them in social skills therapy – what we all consider to be his next step.
I want to remember it. I want to capture that feeling of progress and celebration for the days when it seems like there is none. I want to write it down, take a picture, bottle it…something.
On the days that are dark, the ones that feel like they will never end without me losing my mind. On those days, I want a reminder that God did all of this, that God is doing all of this. Even when we can’t see it. Even when we can’t feel it. Especially when we can’t see it. Especially when we can’t feel it.
There is still progress.
There is always hope.
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