How We Have Accommodated My Son’s Sensory Processing Disorder

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.”

STAMP

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.

 

Seriously, sharpies for days.
Seriously, sharpies for days.

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.

photo 5(1)

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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13 thoughts on “How We Have Accommodated My Son’s Sensory Processing Disorder

  1. I don’t have a child with sensory issues, but I do have a insulin dependent diabetic, and the hundreds of things that we do every day to keep her safe and healthy sometimes seem endless and all-consuming. Sleeping through the night has become a thing of the past, often waking 3-6 times per night, counting every carbohydrate she eats, taking into consideration the effect of activity, growth, hormones, stress, and sensitivities on every snack and meal dosage of insulin. Every day is made up of countless choices to choose life and health. And yet, to watch her grow and learn to trust and follow Jesus through every choice brings me such joy through the fog of exhaustion. 🙂

    1. Oh my goodness, Robyn. It sounds just constant. I am praying for you and your little one right this minute. Thank you so much for sharing your experience. And I am so grateful you too know that joy that comes through the fog of exhaustion (very well said!).
      Love,
      Shawna

  2. After 15 years and 22 days my list of accommodations for 1st child and 10 years 11 months for 2nd child just grows and grows. As a special educator I adopted knowing what was coming as my three were infants that had prenatal and perinatal trauma. The different sensory and learning needs were expected but as they grow the reality shifts. God has blessed me as a single parent to work with and have OT, PT, and speech therapists around. We graduate therapies but as they grow and change new challenges come. The meltdowns are much more when a 15 year old can’t regulate a stressful day and the overwhelm becomes aggressive and safety of all is so unsure. The bag of three DSI’s flies and it hits my cheek and fractures the bone. I know God has shown me those scary moments that He has protected from more danger but I am struggling to understand why He hasn’t healed more. It’s so painful to see your sweet, loving, and caring child under such stress to be inside his body trying to cope with the world become invaded by this alien that comes in his body. He loves God and has asked Jesus to be in his heart but church and loud teens bring challenge. As the parent then the judgement of others who say “doesn’t he understand the consequences of his behavior” or “he needs more punishment”. When he is regulated emotionally and sensory sure he knows and feels remorse. When that moment of stress occurs no his brain can’t access the part that understands. As these kids get older the stakes change. I will love him and I grieve with him why he reacts aggressively but the consequences change. I continue to pray God will provide healing and the future won’t bring reactive behaviors that end in significant legal consequences. I found your blog and it has helped me to remember I am not alone and I have others “in this club” that I wish we didn’t have. I have to cling to hope that God created my kids and I surrender all and look for His promises to come.

  3. Yes, there is always hope.SPD can only be approached with empathy as it must be so hard for them. The car in general is a torture chamber for him unless he is driving. Closed space, close bodies, loud sounds, his sisters singing, the radio….we have so many accommodations….just for the car. Now that he is driving, he drives barefoot as he said he cant feel the pedal through his shoes. It really never ends for him. Our OT has been an angel for over 10 years.

    You speak of progress….he has learned to self soothe and exercises alot. At this age, we need to point out what is probably sensory sticking it’s head out.

    Thanks for writing. You had me in tears at “blinker”.

  4. Shawna, your humble love for your baby is moving. I wanted to encourage you. I had many problems with sensory input as a kid; covering my ears, screaming at overload, not eating bc of texture, and shutting down constantly. I’m now 41 and those symptoms are reduced to about 5% of what they were. I function well, am mom to 4 kids, and most people don’t realize I’m different in any way. Sounds can still be a big problem for me but I found some great (but expensive) noise- cancelling headphones by Bose. I don’t know the future for your baby, but I wanted to let you know there were adults out there who learned coping tricks and are loving life, living richly. Bless you and your son.
    (On a side note, my ability to pull in a lot of data at once landed me a great job as a computer programmer. )

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