Tag: SPD

Sensory-friendly performances: The good, the bad, the happy medium

Sensory-friendly performances: The good, the bad, the happy medium

I’m about to say something that might seem to go against the grain, but I’m going to say it anyway.

Sensory-friendly performances aren’t inclusive.

There.  Feel better?  Me too.

Here’s why I feel this way.

When a play or a movie or, well, really anything goes about its normal business, things are likely to be loud, bright, overwhelming, and busy.  We can certainly acknowledge that this can feel downright volatile to anyone with “different” sensory needs.

I feel like organizations are SO hellbent to provide “autism friendly” or “sensory friendly” experiences that they forget one vital fact: This doesn’t provide inclusion, it provides a way for those with sensory needs to experience the thing separate from everyone else.  And that, my lovelies, is exclusion.

I’m gonna tiptoe out on a limb here, but what if – gasp – every performance or every day was sensory friendly?  Who would that harm?

What if places with sensory rooms at certain times (only during specific events) had those spaces (like a room to calm and regroup) ALL the time?  And why have they not done that yet?

Look, I want my kids to go to this thing or that thing just as much as anyone else.  And when we see a “sensory friendly” showing of something I do smile.  At first.  And then I realize that my kids won’t experience the thing along with their neurotypical peers.  They will get to share it with other kids like them, but they would get to do that organically if sensory friendly was just a THING that we could find any day of the week.

So why can’t we?

People/companies seem to think it’s out of reach.  Or maybe they think that one performance out of 20 that is done as sensory friendly is sufficient.

I can tell you right now, it’s not.

The beginning of the most important journey of our lives…a.k.a. Chapter 1.

When we had our first son together seven and half years ago, life was relatively simple.  I had been married before, as had my fiancee (now my husband).  I had ended my previous marriage and we shared custody of my two sons from my first marriage.

So there we were, with a new baby and two pre-teens.  Wait.  Did I say it was simple?  Okay, it wasn’t at the time, but when I look at how life is now and look back to that time, we had it kind of easy.  We were making very little money but by gum, we had LOVE on our side, right?

Starry-eyed and raising this brand new life, we were totally unprepared for what would come a few years later, when our second son was almost one year old.

Can anything really prepare you for that moment when you realize that things may not be progressing typically with your child? I remember moments when he was about 8 months old when I’d be holding him and rocking him to sleep.  I’d remember the scene in Mr. Holland’s Opus when his wife realizes that their son is deaf. And on some level, I knew.  I didn’t know what I knew, but I knew.

A few months later, my husband voiced his concerns to me. “He doesn’t look at us when we say his name or when we speak at all.  I think something’s wrong.” He was right- our very smiley, happy child was no longer looking at us.  Most kids at 11 months old are at least looking up when a parent says something, but he did not.  He was happy, but distant. At first we thought it was his hearing, and we talked with his pediatrician.

She referred us to the Ear, Nose, and Throat doc in town, and suggested that we call Early Intervention so that they could come and assess his development.  He was missing out on some of the standard developmental milestones.  By the time he was a year and a half, he would get tubes in his ears to hopefully bring an end to the many ear infections he had as an infant. At the same time, he was receiving speech therapy and “special instruction” to help him learn how to play with toys in an appropriate manner (don’t get me started on that, I have a whole separate post on “appropriate” play).  He was seen by social workers and specialists galore.  He had one hearing test after another, all inconclusive.  A month after the tubes were put in his ears, he had what’s called a “sedated ABR”, or auditory brainstem response study.  This is a test which measures the brain’s response to sounds, and the patient is sedated.  This was our first conclusive test- he had perfect hearing.

Finally, we had a better idea of the direction to head. This was not medical at all, but developmental. His pediatrician referred us to a developmental pediatrician at a hospital two hours away.  They had a long intake process and were booking quite a ways out.  Four months later, almost exactly one month before his 2nd birthday, we were given his official diagnosis of Autism Spectrum Disorder, a Global Developmental Delay (he was delayed by about 18 months), and a Sensory Processing Disorder.

Luckily for us, we’re a rather “clinical” household, as I describe us to physicians.  That is my way of saying “don’t tiptoe around it, just say what it is”.  We’d already done a lot of research by diagnosis day, so this was no shock to us.

By the time he was three, he was aging out of Early Intervention services, and we found him the most perfect integrated preschool.  He was the smallest and youngest in his class, a tiny little non-verbal boy with a pacifier in his mouth and two small plastic animals in his hands everywhere he went. He communicated by pointing at things, and using the few ASL signs that we’d learned as a family.

He developed an incredible bond with his teacher and his aides, people that I am so grateful to continue working with.  About midway through his second full year at the preschool, he began to speak.  I finally heard his voice, and I sobbed.  From there, he continued to flourish, and now he can speak at length about his favorite subjects.

When he finished his second full year (including summers) at the preschool, we braced for him to move into the school district, in a gen ed classroom with a fabulous teacher and a 1:1 aide.  Now he’s in 1st grade, reading well and writing well.  He’s still got needs, and we’re meeting every one as they come up.

All along our path, things have just kind of…aligned in our favor.  I can’t say why, but I do know that no two families travel this path in the same way.  We bring to it our own personal experiences, knowledge, heart and soul.  And no two days are the same, either.  Some mornings I cry on the drive to work.  And then I dive headlong into helping other families so that I can feel some sense of purpose.  Other days are more easy to manage, and on those days I realize how lucky we are to have kids who have taught us so much more than we ever thought possible.

On to chapter 2…

He ate what?

 

 

Many kids on the autism spectrum also have sensory integration dysfunction.  This is something I’ll spend more time on, but I’d like to speak about eating difficulties.

You may have already encountered this- your child will only eat certain textures or foods that are only white or only bread products.

Before you say it, yes, many kids have this issue.  But it goes deeper for kids with sensory needs, and can cause a whole host of nutritional problems.

For some kids, there are actually links to gastrointestinal distress and eating problems.  Before you can decide if something is a sensory problem, you should always rule out medical concerns.

At the conference I recently attended, I heard an Occupational Therapist talk briefly about eating difficulties in kids with sensory integration dysfunction.  I’ll admit, it’s kind of a hot topic for us spectrum parents, and something we worry a lot about.

My WonderBoy eats only a few foods: chicken nuggets, peanut butter sandwiches on wheat bread cut diagonally, or a plain bagel toasted with butter, cinnamon and sugar on top.

That’s pretty much it, with only a little bit of variation.

I was reminded by this OT that it’s important to avoid the “food rut” where we let them eat the same thing every single day.  Admittedly, this is hard to do when you’re trying to manage multiple kids with multiple needs and you just want to help your kid eat something.

I remembered that “first, then” works really very well with WB.  So yesterday I asked him to try something that he wouldn’t normally eat, in order to gain access to the food he really wanted.

Y’all, it worked.  Really!

Since yesterday, he’s had four bites of banana, a bite of shrimp, and even BROCCOLI.
Now, our Speedy really loves raw veggies, so we’ve been a bit spoiled with him. I mean, how many 7 year olds actually love asparagus??  Yeah.  He does.

So tonight I decided to capture the broccoli moment on film.  Please remember that I am never forcing him to eat it, and he absolutely loathed broccoli before this moment: