Have you ever been on one of those life-changing holidays? Gone somewhere and seen/experienced things that changed you…forever? Then come home to…reality? You knew you were different. You did NOT want to lose that spark. But now you have to learn HOW to use this knowledge in your every day life.
That is how I feel this morning…after #autismfestival17
After a good night’s sleep…always a great idea after these things…I am up early. And unpacking my mental suitcases.
I took the time yesterday before I dropped into bed to connect with the speakers and organizers through Twitter…I love technology. So this morning I woke to some links to explore. I have begun that process but only scratched the surface.
My mind is still at those crossroads…although honestly it is more like one of the British round-abouts. One of the REALLY big ones with loads of streets coming off of it. I think at this point…the best/next thing may be just to name/organize those streets…the things I have learned.
Disabled??? – I have been struggling with this one for a very long time now. How I can believe and teach PanKwake that she is perfect, that her brain is just different, and that that is a good thing…while still accessing things like DLA and carers allowance? I felt like such a fraud and hypocrite. Yet I knew that she did have additional needs and support was vital.
The Social Model of Disability was an ah-ha moment…it actually put into words how I felt about things. That PanKwake had challenges (I do not even like the word impairments). We all have challenges…even the best of us. BUT the difference is that the environment…society…this world…is the problem. Not PanKwake. It magnifies her challenges by making them less acceptable than someone else’s. Thus it is not her challenges but the environment itself that disables her!
Even that though just does not go far enough for me…neurodivergent? Support without the ‘disabled’ label? Now that…that I can get into! But how?
Networks??? – One of the things that I believe in is…tribes! I may not be AWEtistic but I am far from ‘normal’. I have never fit in…and have not even wanted to in very long time. Oh, sure, when absolutely necessary I can take my mask out of the drawer and wear it for a little while…to make others feel comfortable (only important others though…important to me) or most importantly…when getting my message across is more important than being myself. So in many areas of my life, I have found my tribes…the most important one being Cookie and PanKwake.
But not when it comes to AWEtism! Like I said yesterday, I usually HATE going to these things. Specifically, being around other parents with autistic children depresses me. (Please forgive me if this is not your preferred term…after speaking with PanKwake and clarifying…it is OURS…AWEtistic and PROUD!) Like I said…I know that my child is different and faces challenges…
SO WHAT?!?!? We all do. Yes, PanKwake has meltdowns too…sometimes violent ones. But less and less now that we have given her more and more tools…found our place. Yes, she has been bullied…and I put a stop to it. Yes, she and I need resources…but looking to government and begging has never gotten any useful ones so we have learned to find our own…because then they are the ones that work for US…and not generic off-the-shelf ones that ‘experts’ have decided work for ALL autistic people.
Obviously, the support…the CONNECTION that I need and crave just is not there with any of the parents groups I have found so far. Now to be fair…I have not been the ‘normal’ parent. But I found my niche/tribe with NT (neurotypical) parenting when I discovered Le Leche League and Attachment Parenting. So I am left to wonder…is there any groups for parents out there that ARE happily parenting an AWEtistic child? That radically would NOT change their child even if they could? If not…what then? Do I hook up with those happily AWEtistic adults? Will they be comfortable letting me in? Do I form such a group? If so…HOW?
Not that I am judging those other parents…but their struggles are NOT mine. The truth is that we ALL have biases and prejudices. The speaker that I learned the most from yesterday kept coming back to routine as the answer for everything…because that works so well for him. Yet that would NOT work for PanKwake. Her issue is CONTROL. So even if she did set her own routine…as she does…she would eventually tire of it…need and seek change. So the structure that he and many others on the spectrum crave would actually create meltdowns if I tried that strategy with PanKwake. That is why it is so import to…
Be Yourself!!! – Yesterday challenged MY prejudice…revealed it for the flawed and broken looking glass at AWEtism that it was. MY prejudice? That as she grew older, matured PanKwake would ‘look’ less autistic. That she would just magically grow a mask…and wear it when she went…out there.
Sitting here this morning…I think…WTF? Why and how did I ever come up with that bull sh^t? I know PERSONALLY the high cost that I pay on those rare occasions that I dust off my own mask. And as a child…that is not what I have taught her to do. We don’t hide our AWEtism. We use a Maclaren buggy because it works for her…and have learned how to educate those who stare or make comments.
For an eleven year old, PanKwake is a heck of a spokes person for AWEtism as a result. So why would I have ever wanted or believed that one day in her teens or twenties…she would start to look ‘normal’ when she needed to?
No, I want her to know that she can PROUDLY take Billy with her…anywhere she wants to! And if she wants to wear her skirts that I sew or even pajamas (though she never does now) she can. Yes, I want her to be herself…AWEtistic and PROUD (blue and naked like Raven/Mystique).
Then there are the practical things to think about…But maybe I should tackle that one tomorrow…as I need to go work on organizing her new playroom. Let me just take a few notes before I forget though…
- Adaptive technologies…
- Future planning…career/autonomy vs. independence…
- Peers, support network, and tribes…
I really cannot say THANK YOU enough to Swansea Medical School, Dean, Jamie and Lion, Jon and Robyn…and Robert too…for yesterday! You changed our lives! Do you realize the importance of THAT? So from PanKwake, Cookie Monster and myself one more huge THANK YOU from this #HomeCrazzyHome!