Thursday, May 19, 2016

What is it like to be a parent of children with sensory challenges?


In my brain, I carry around a catalogue of snippets of comments and conversations I've had with teachers, caregivers, relatives, all of whom have wanted the very best for my child, but simply were not aware of sensory issues.  In case you have ever felt alone as a parent of a sensory-challenged child, let me share with you some classic conversation gems.

If you have ever been one of these sweet people that have stopped me or my children, please know that I value you and completely understand where you were coming from!  I, myself, have had these thoughts before at some point about someone else's children, I'm sure.  Parents I gave dirty looks to when I was 17 and saw your child in Target, I'm SO sorry!  This is not about blame, but about shedding some light onto what it's like to be the parent of a child with special needs or sensory issues.

"Oh, ma'am, your children need to stop climbing on that."

This one is usually said in wherever there are lines or places of waiting.  Many kids who struggle to organize their little body's senses will seek out whole-body stimulating or organizing behaviors.  This, in plain English, is really just a lot of wiggling, climbing, constant movement, or perhaps the opposite- avoidant behaviors, screams when touched, won't set foot in a crowded store if you offered all the candy and gum in the world.  Typical stuff ;)
So naturally do my children climb that if you were to try to parent that behavior out of them, it would be just as effective as trying to parent them to not breathe.  It simply wouldn't work.
we used to have a no climbing on furniture rule....

"Can you use your inside voice, dear?"

No, actually Dear cannot use her inside voice, so so sorry.  Auditory processing difficulty can often look like a child who gets incredibly irritable when they are surprised by a noise that you or I wouldn't even think was very loud.  Fire engines and ambulance sirens can be Threat Level Midnight! But it also can look like a child who hears every single little sound- that pen that someone dropped while filling out their check two lanes over, the whir of the florescent lights, the beeps of the cash register, the voices of every single person all coming into their little brain like separate stories being read aloud to them all at once.  So to drown a bit of it out, or to hear her own voice Dear will yell-talk to you until the cows come home.  Taking in ALL that input, and trying to restrain her voice would be like you trying to thread a needle while you are running a crowded marathon!  I have tried enough exasperated times, when we are out and this is happening, to constantly remind her and practice her "inside voice".  Eventually, after the 17th loud public conversation, my face must show how tired I am and I see that creeping expression of shame enter that sweet 7 year old face.  No.  I just can't keep doing it.  I have decided that I'm just going to let her yell-talk.  Sorry world, if you are in a restaurant with us, I invite you to join our conversation as you probably will hear it from any seat in the house ;)!
[no child was exposed to excessive noise for this photo...she was enjoying the acting, although this is pretty spot on ;) ]

"Can't you just listen and behave?"

Ok, I'm guilty of saying this one myself....often.  It's hard for many to understand just how difficult it is for children- children who hear everything or who don't know how to feel their body or who can't stand how intense it feels to get touched- to simply listen to one stimulus.  That is what one voice is in their world- a tiny stimulus amidst 1000s of other things, all going on at once.  When my children don't listen to me 9 times out of 10 it's because they had several other things their brain was telling them to "listen to" at the same time.  My small voice cannot compete with that.

Yes, sometimes my kids are kids.  They are choosing to test limits and are seeing what they can get away with.  Sometimes they don't want to do something so they don't do it.  It's not entirely a sensory game.  But here's the thing- it's just that so, so much of the time they are trying, really, really hard, in their very complicated little world to do what is expected of them, to please us, to do the right thing! 

So if you have heard these things, or comments in a similar vein directed at you or your kiddos, or if you have said them yourself, I'm right there with you friend!

If you see kids like mine out at the store, your neighborhood, or in a classroom near you, know that they are really, really trying...so is their mom and dad!


If you think your child may have some difficulty with sensory processing, I would consult with an Occupational Therapist near you.  Many children who are adopted or fostered have experienced many risk factors that have impacted their brains ability to process sensory information: a difficult birth, mom had difficulty during pregnancy, early medial treatment, attachment trauma, abuse, and neglect all lead to some level of sensory difficulties!  Also, I'm continually updating my Resources Page where there is a Sensory Ideas section so check back often! 



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