I’m in the process of creating a new room for Josiah. Right now his room is rather bare. He has a bed, a large bean bag chair and a dresser. The room has one accent wall, painted brown. The other 3 walls are beige. I really want to make Josiah’s room more exciting for him. Actually, I’d like to create more of a sensory room for him. The goal is to create a room that is inviting, yet calming.

Josiah is drawn to lights. He always has been. When he was an infant and needed to see an ophthalmologist on a regular basis, I asked about it. I wanted to know why my baby stared intently at lights. I wanted to know why he appeared to look right through me and not even notice I was there, but studied lights with rapt attention. The Dr. said some of his patients with Down Syndrome did that. He said he didn’t know why but some just spent a lot of time staring at lights.

Hmmmm. That should have been the first hint we were dealing with more than just Down Syndrome perhaps. Josiah is 10. He is still fascinated with lights. If I want him to focus on what I am requesting, I have to turn out the lights just above him. Otherwise, he is not even remotely involved with what I am doing. Once the lights are off, he tunes back in.

In researching sensory rooms for kids with disabilities, I found so many amazing options. There are cool lighting devices to provide just the input kids like Josiah crave. Id’ love to include some in his new room.  There are products to provide deep pressure input. Josiah loves big squeezy hugs and would definitely benefit from something that would provide just that kind of tactile sensation.  There are one or two toys I’d love to include  to provide sensory feedback and help calm Josiah.

Here’s what I learned. Actually, I already knew this. I guess I was just hoping things might have changed a bit. Almost EVERYTHING for a child with disabilities is expensive. Not just a tiny bit expensive. Not even, ‘we will save up for this expensive’. They are ridiculously expensive. I’m not sure why. I’m assuming many people who have created websites to sell these types of things have been impacted in some way by a person with disabilities.

I figured that is probably why they began offering these items to others in the first place. They know they work. They know they make a difference. They know it may help others. So, why then, the inflated prices?

These are the items I wanted for Josiah’s room. The prices of each are included:

Small LED Bubble Tube ~ Effective for calming and soothing before bed. $995.
Fiber Optic Softie ~ Can be used to calm, relax or stimulate. $1475
Big Hug ~ Provides deep pressure to calm, organize and redirect energy. $705
Noisy Sound Board ~ Encourages interaction and self motivation. $ 898
Vocalization Bundle ~ Encourages vocalization. $2935

I’ll stop there. These are just a FEW of the items that might make a difference for Josiah. They might make a difference for us as well. Ideally, he’d be calmer. He’d sleep better. We’d sleep better. But those things are just pie in the sky Wish List items. I don’t ever really anticipate purchasing them. Ever.

However, there are others I really do hope to someday get for Josiah. They would make a huge difference in his daily life, in helping him enjoy some things he’s not able to now and in helping to keep him safe.

Tandem Disability Bike ~ So Josiah and his dad or I can ride together. $2025.
Autism Service Dog ~ To keep Josiah safe and help calm him. $15,000-$20,000

Keep in mind, these are just a few items. The cost of most everything for people with disabilities is extremely high. I’m not sure why that is. In a perfect world, products to benefit people with disabilities and make their lives easier would be reasonably priced. How about free even? What a concept.

Often times we get something for Josiah we think he will love. Often times, he doesn’t. Usually, he has no interest and it’s money wasted.  How about a library of sorts to lend these things out for parents to try with their kids?  If they work, if the child likes them and if the parents want to invest money into them, they would be available for rent.

I’d be all over that. I’d stand in long lines to get my hands on some products that could impact Josiah’s life in a powerful way. I’d pay huge sums of money to rent them if they worked. I don’t know of any such opportunity though. So, for now. no therapy dog for Josiah. Mocha, our ‘untrained, unable to keep Josiah safe because she often runs off herself’ dog, will have to do.

Josiah does love to ride on my bike though. So, as long his 10 year old body is able to squish into the toddler seat on the back of my bike, we’re good to go.