Today and likely tomorrow, I am continuing with all the amazing things that I learned on Sunday at #autismfestival17 organized by Swansea Medical School. It was one of those life changing experiences…
So let’s jump right into it…
Adaptive technologies…Going back to the Social Model of Disability where…Impairment + Environment = Disability, even though the model itself was new to me that has been the foundation of everything I did for PanKwake. I rarely try to change her (only if it is health and safety then reluctantly and gently). Instead I change the environment to accommodate her needs. Or I advocate for her…loudly and angrily when necessary.
Home education. The Maclaren Major buggy. The Magic Five Point Scales. Her sleep. Sensory toys. Ear muffs in summer to dampen noise. Sun glasses in winter. Her skirts that are not only comfortable but allow her to dress herself. I mean EVERYTHING! This is my first line offence…and defence.
And surprisingly, Cookie Monster got that from the beginning. He brings the techie side to things. Because of her severe dyslexia (undiagnosed), she still is not reading. That does NOT mean she is not smart. She possesses critical thinking and logic skills beyond many adults. She just learns by doing and hearing (kinesthetic and aural).
So he bought her Echo. Echo can read some things to her. She can also turn off PanKwake’s lights and television with voice…how cool is that? But best of all…she can tell PanKwake the world’s worst jokes.
The thing is…PanKwake is constantly changing and growing…and so is technology. Jamie and Lion challenged me to think into her future. Of course, it is not just technology either, if Cookie’s allergies permit, our long range plan is to find and train her a service dog. Demand is so great that even waiting lists are closed so doing it yourself is only option.
But that is just it…my whole philosophy…I have always found a way to give her what she needed…to alter that environment so that the playing field is more even. Except when it comes to the biggest things of all…the true environment.
Cookie spent so much money that it boggles my mind on #HomeCrazzyHome…FOR HER! Because the neighbor complained about her making too much noise going up and down the stairs in the middle of the night. I could not have done that…
But of course no matter how much accommodation we make the hardest, coldest fact of all is…SOCIETY is her biggest disabling factor. How they see autism…and her. I have fought and will continue to fight…loudly and angrily when necessary for my child. And just as importantly I have taught her to fight for herself. Seeing those men and woman on stage reminded me…we are not fighting this prejudice alone.
Which leads nicely into…
Future planning…career/autonomy vs. independence…I stood up and asked the first question of the day to the panel. What one piece of advice would you give parents about raising an autistic child? Someone spoke about this being a good time to start thinking about the future and planning. He asked what she liked, was good at. I mumbled about her pranks…but the truth is…she is so good at many things. I feel like the world is her oyster.
PanKwake likes…art, crafts, photography, wild rides, sports, YouTube, gaming, role play/acting, music/singing, animals, small children, older people. Heck, she has even mentioned modeling…and she is beautiful/exotic enough to do it too. It is not that she is not good at anything…but good at so much.
The thing is…when I mentioned she was still a bit too young to choose (heck, I still have not), Cookie made the most brilliant point…Who says she has to? He is right too. Once upon a time diversity of thought, being good at many things was highly valued…the Renaissance man. Cookie is a modern version. And PanKwake very much is too. I do think that is the power of the AWE-tistic brain. That when it is not encumbered by its environment, it holds the potential of the universe.
That does not mean though that I can just sit back and leave everything to chance. If anything, it means just the opposite…that I must redouble my efforts to enable her to reach her full potential.
Which means I need to change the way I think about…
Peers, support network, and tribes…One of the biggest myths about home education is that the children are isolated…lack socialization. Nothing could be further from the truth. Yes, because of her erratic sleep patterns, sensory issues and choice, PanKwake can go through periods of time when she does not do much outside of the home or see anyone other than Cookie, Mog and me…but that is HER choice. And one that adults are free to make…well, in theory anyway.
But then there are other times when it seems PanKwake cannot stop. Parks, swimming, home ed groups, play dates, walks into town, eating out…you name it. Going back to that accommodating her environment thing…I have always done everything in my power to enable both those extremes.
Our home even that teeny, tiny, dingy flat in London was always open to friends. I even chased them down sometimes. I spent eight hours in the park one summer day. Seriously, we went to the park just after lunch and it was dark and cold when we finally got home.
Anything and everything to give her the level of socialization that she wants in the moment.
BUT that too was challenged on Sunday. One of the guys pointed out that her peer group was not necessarily those her own age. Ah-ha! Here…even as radical unschooling as I am…I have still been trapped into that school model of same-age = peer. PanKwake though has always preferred the company of adults. Even though she does have and always has had one or two good friends about her age, her deepest connections are with adults.
It speaks to the sad state of our society that parents are discouraged from fostering friendships between children and adults. But I need to break that mind set too. I need to think creatively about how to connect PanKwake with gamers, artists, muscians, YouTubers and so many others.
Overall though…as I said to the panel…I have ALWAYS known that my child would have a bright future. Not despite the autism, but because of the AWE-tism. Sunday convinced me of that even more. Seeing those men and woman, what they have achieved…hearing their stories and successes…I am more committed than ever to giving PanKwake the tools she needs.
I know I sound like a broken record but THANK YOU to Swansea Medical School and its staff for organizing the event. Jamie and Lion tweeted yesterday about how difficult days after events are…trust me I know…but PanKwake, Cookie and I so appreciate the sacrifices that the speakers made to PEOPLE so much (I hate peopling too). You really did change our lives!
If you are tired about hearing all about the #autismfestival17 then skip tomorrow’s blog because I have one more day (at least) of insights I gained. I want to think about the little things…those gems and pearls that I gained…ideas like…how easy it is to assume things even when you know better.
Oh and if you missed it and have Facebook (the whole world does…except Cookie Monster) then you can see the video at…
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