The Ups & Downs Of Living With SPD

 

I thought we were doing better.  I thought that the Engineer was learning to cope, learning to deal with his sensory issues.  Either we had a really off day or I was horribly wrong.

We went to a birthday party where I had my own issues to deal with.  That quickly became low priority when the Engineer (and his two siblings) started having major sensory issues.  And I forgot to bring the noise-canceling headphones.  Mea culpa.

Part of the party was outside, and the kids loved it!  True, we had to run herd on ours so that they didn’t fall into the creek or roll into the ravine.  Gotta love those extreme seeking behaviors.  It was a bit cold and chilly so we trooped back in for cake and presents.  The kids played in the playroom downstairs and the adults started to get all the birthday cake, snacks, and drinks together.  Once we sang Happy Birthday to the birthday boy, my boy lost it.

He went on a crying jag because he couldn’t sit where he wanted to.  I was perplexed: normally this wouldn’t have been an issue.  Nothing worked.  Talking to him, trying to calm him down – nothing.  I gave up.  On a hunch, I dragged him upstairs and sat him down beside the window.

It wasn’t until I took him upstairs that I realised just how loud it had been.  People talking all at the same time, kids playing, people laughing, noises of plates, forks, and rustling of paper.  It was too much for him.

He’s managed to overcome a lot of his sensory issues, but new ones keep cropping up.  Right now, his main aversions are people and sounds.  He just can’t handle having too many people around, and his definition of too many isn’t yours (or mine!)

It wasn’t until I calmed him down enough to go eat cake that I realized exactly what the issue was.  We were walking down the stairs and suddenly a blast of sound rounded the corner and hit us.  Just people laughing, kids playing.  Nothing major.  But the Engineer stopped abruptly, put his hands over his ears, and turned to me with the most awful pained expression on his face.

He ate his cake upstairs, away from the party.

As I sat there with him, equal parts keeping him company and preventing him from testing the telescope, I was filled with sadness.  My kid can’t go to a small birthday party without being in pain.  He can’t sing Happy Birthday, he can’t eat cake with his friends or play with them.  His seeking behaviors meant that he was all over the stuff he shouldn’t touch, and getting “no” from every adult there.   He knew we were frustrated, and he rightly knew we were frustrated with him.

It’s so hard separating the SPD from the little kid.  To understand that the impulse control issues make him feel powerless.  It’s hard not to get frustrated.  Angry.  Annoyed.  At him – after all, he’s the one doing this stuff.

I keep reminding myself: it’s not his fault.  He wants to behave.  Mostly.

A few weeks ago he asked me what addiction was.  I answered clearly and precisely, as I do all of his questions.  After my explanation of addiction, he processed for a bit and then thoughtfully said “Mommy, I think I’m addicted to misbehavior.”  I was driving at the time, but I swung around to look at him.  What?  “I don’t want to misbehave, but I do it over and over again.  I can’t control it.”

I wanted to cry.  To stop the car and hug the breath out of the little guy.

SPD is such a bitch.  It screws up your mind in so many ways, it’s impossible to describe it in one blog post.  Or five.  Or twenty.  I can’t tell you how much it’s changed his life because this is all we know.  All he knows.  He knows that his wiring is wonky.  That it doesn’t work the way it should.  It frustrates him, it damages his self-esteem, and he hates it.

I’m his mom – the woman who can’t fix it, but should.  The one who should be able to help him overcome this: to beat SPD into the ground and let him be normal.  Let him have fun at a birthday party.

I think that’s the hardest part for me: knowing that I can’t fix it.

 

5 comments

  1. thanks for sharing. As my son is now almost 8, we thought he grew over most of his issues. But there is the misbehaviour, especially towards the cats…his brother is older and he cannot play boss or control his older brother, but his urge to control is so big that he will try to control the cats and in doing so hurts them occasionally.
    I love this child to pieces but also worry about what goes on in his brain when he continuously does something, over and over again, even if I tell him 20 times not to. It worries me how he will be when he grows up. And it makes me sad that sometimes I am scared of this child, and what he could do.
    No magic wand, and all the scratching on his back won’t make the SPD go away : (

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  2. Oh bless him. My eyes filled up with tears when I read what he said to you in the car. I too grieve over and over because I want my son to have a normal childhood, to enjoy those ‘normal’ experiences. Your little one is so lucky to have a mum who understands that it’s not misbehaviour, just different wiring.

    Does your son like music? As my sensitive children have got older I’ve found they both derive intense enjoyment from music thanks to their sensual and emotional OE. (Though my son can’t stand anything with words, and for my daughter it’s almost all about the words.) It can be hard to find the upside of SPD but we can try. What sounds does your son love?

    Thank you for another moving post. 🙂

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    • He loves music, but seems to be most interested in instrumental (and shows quite an apptitude for keyboard, looks like we’re buying one in the near future.) Thanks for the suggestions! It’s so hard, isn’t it? Especially when they know they’re different and don’t want to be 😦

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