Poppy has taken to talking to me about some serious things lately. Some are light and make me smile. He told me about the time my Mommy asked him if he would take care of her baby after she went back to work. He said yes and then realized it would be full-time. Ops! Well, he got a bigger oops! when I came along!
But last week there came a day when it got real serious. You see, I have taught him a lot in my 14 years and even more in the last year as he does my homeschooling. We make a good pair and he, for an old duffer, has learned all the ins and outs of school even the therapies.
It turned real serious when I heard him say, in an emphatic way: “THESE CHILDREN ARE INVISIBLE TO YOUR COMMUNITY AND IT MUST STOP!”
At the time he was talking to a leading scientist at on one of the country’s most lauded centers of neuroscience. I also heard him profusely thank that person as they apparently totally agreed.
Being ignored for me and my kind is a every day occupation. We can do nothing but wait and watch. We have no skills, no voice. Often our physical needs overwhelm even our most loving parents, leaving no time to plumb the depths of our soul or measure our untapped talents. We are destined to go to our grave never having our thoughts recorded or even a consideration that those thoughts might exist.
The shame of it is that we have a prodigious and creative neuroscience industry in this country. Right now they are converting intentions of the brain into actions and words and thoughts. Yet I would be hard pressed to find them knocking on the door of my brothers and sisters to try it on us.
When Poppy was young they hid us away. Today we still hidden away and shunned. It’s time to change that. Only our parents and caregivers can do this. It will not be done by our clinicians. The train line of basic science speeds right by our town.
A recent journal article confirmed we get virtually no consideration in research that would benefit us:
1. analysis showed that 94 percent of autistic spectrum study participants do not have intellectual disability;
2. analysis found that only a shocking 2 percent of the autism samples included nonverbal or minimally verbal participants.
3. 90 percent of the cited results from studies did not include any participants with intellectual disability as if they pertained to the entire autism spectrum.
We must demand our place in research.
Anthony Barker says
Yes, your Grandad is certainly committed and loving old “duffer”.
Your granddaughter is never invisible and as long as there are advocates like you for children like her she never will be!
Thank you for noting that but far too many children do not have a voice/
Great post, Haley & Poppy. Never give up!