I call it the Bored Chorus. I tried to get her to let me make it into a music video for YouTube. I thought we would record her singing it in different rooms of the house and doing different things. I mean…
- PanKwake has a gaming/art room with a bank of three PCs, all with Minecraft, Roblox, and Steam.
- She has 100s of Shopkins and Barbie dolls, dozens of dolls and board games, and a whole closet full of dressing up clothes.
- The backyard at #HomeCrazzyHome is large with a trampoline. I bought her a small paddling pool so we could make our own giant bubble wand.
- We have a cat and a fish…and looks like we are getting a lizard next.
- She has two iPads (in case the battery dies on one then she has another…that stopped so many meltdowns) with HUNDREDS of apps on them.
- She has three Kiddy Zoom action cams, their wrist watch and a video camera.
- A beautiful, pink bicycle, a skateboard, and a scooter.
But before you go off on telling me how ‘spoiled’ my child is…
The one thing that she does not have right now is…
Freedom to go places she usually goes and do things that she loves doing and see her friends that she misses so much.
Because of her super powers!
In particular her sense of hearing. Because of the autism, PanKwake has almost bionic type hearing. Seriously, this child can hear across the floors of #HomeCrazzyHome. There is no keeping secrets from this one.
But that also means in crowded places, she cannot filter out background noise. People talking, florescent lights popping, shoes tapping on floors, you name it. Sounds that most of us can filter out and focus only on the ones that we need to. She cannot. And as a result she gets over-sensitized. Overloaded. And melts down.
When she was younger, we could NOT go to a store. Within 5 minutes, those lights were driving her mad. And the people. The scanners. She could not describe it then. So I thought it was a combination of all her senses…the strong smells, cold of the frozen goods, and all those people. She did complain about those things. But now that she is older and better able to communicate, she tells me that she can manage those sensations. It is the noise that gets to her.
And right now…every where that we go is too crowded…too noisy.
All the places that she is used to and loves…
The LC2…we had to walk away once and tried another time. She survived but then melted down at home later on. Same thing with going into town for Tater Man. Joe’s ice cream too. Even the park. We lasted all of two minutes there. We left before she did the zip line, folks. That is serious.
It is challenging my views of autism. Ya’ll know that generally I dislike the term…disabled. I use it only in the context of the Social Model of Disability where…
Impairment (i.e. autism/PDA) + Environment = Disability
And I have gotten cocky. We have successfully utilized my model of advocacy and accommodation to do everything that PanKwake wanted.
For the first time in a very long time, I am forced to face the life-limiting nature of PanKwake’s autism.
Of course, I am doing all I can to continue with the accommodations…
- We are trying to go to those places on days and times that are not so crowded…but with her off-kilter body clock that is not always possible.
- We are instead having our friends over here…but that too is challenging. They are all taking advantage of all those great things that are on only during summer…the things that we cannot.
- And when we do go out, I stay focused on her and listen to what she wants and needs. I am also prepared for the consequences later on. Realising that she cannot control the inevitable meltdown that is almost certain to be necessary to release all that pressure inside of her.
But even with all those accommodations, my beloved PanKwake is still…
I.e. unable to live the life that she wants because of the autism. And this time, I have no control over the environment that is disabling her. We can only hang on…pray for summer to end…and things to quiet down once again.
But it is hard seeing her in this pain. Knowing that I have reached the limits of my ability to give her what she needs to tackle life on the autistic spectrum.