I want to talk about raising awareness. Or maybe Self-Identity.
You can listen to me reading this blog post in this audio and in my podcast
My sister has become a networker and voice in a community of people raising awareness of Down Syndrome.
She’s even got a popular blog called Parker’s Place.
Her journey is a bittersweet thing for me, because she’s surpassed my expectations for myself. Proud of her – god yes! Delightfully surprised? Hell yeah! In awe of the ability of one person to make a difference? Bring it on!
She is a wonderful, articulate writer and a tiger protecting her family. I am very glad to know and be related to her. She wrote a post recently which is… god… gratifying?, acknowledging things I feel but written differently? You should read it. (The link is now broken, but you can find Kat’s posts on parkermyles.com).
Every now and then though I get a twinge of disappointment. ‘I should be doing that…’
Years ago I did some public speaking at small community events to raise awareness of various issues. I’ve also tried making facebook pages, but my lack of communication skills rendered them dead before they got off the ground.
A recurring theme is wanting to make a difference.
In years past I’ve gotten feedback from some people that I made a difference to them or opened their eyes. Something happened recently which is more timely than maybe the person could realise. These were (and remain) gratifying events. Significant events in my life really.
After times of loss of identity and disappointment for where I’ve ended up in life I always end up going back to ‘how can I make a difference?’ ‘How can I raise awareness?’ ‘What can I learn?’.
I may not know how to reply to someone but I’m eager to learn.
I probebly won’t hand someone a dollar but i’ll share my triumphs and failures in learning how to manage money.
I may catastrophise things, but boy do I care when someone is distressed.
These traits are important to me even if I forget from time to time. Like when I started writing this post.
You may ask how much do I like learning?
I’ve been taking short courses through Open 2 Study. Currently i’m doing Sociology, because having Aspergers there’s a fair amount about this topic that I don’t know.
There’s also the lecture series about Classical Mechanics on YouTube. I was going through lectures on Quantum Physics a few months ago and the teacher Leonard Susskind mentioned he expected the students to have that knowledge. So every now and then I dip into those.
Seeing as I’m not sure how much I really understand, i’ve signed up for a Eight week course in Quantum Physics. Starting this week. Eek – two courses simultaniously for the next two weeks! Not quite sure how i’ll manage.
If it turns out that i’m not so good at it, Quantum Physics can remain a hobby. And Neuroscience. I’d be content to be an arm-chair scientist in my mind. I can’t even consider talking science with an actual scientist though.
Then of course I want to study a Diploma at TAFE. Still thinking Community Services, which has been an interest for years. Niggling doubts and worries that always seem to be there show up as ‘but it’s soo cliqued – how embarrassing’.
Occasionally I have setbacks where my world kinda crumbles around me. I can’t leave the house, self care isn’t ideal. Not employable.
BUT I have a plan. Stick to my daily schedule. Study informally. Study formally, then return to work slowly.
Keep reminding myself of my values.
Message to Parker
I guess if I was doing a speech with my nephew in the audience I would say something like…
Sure I have problems exacerbated by a late diagnosis of Aspergers. But i’ve also got some great values because of it. I’m a fighter, a learner, someone who cares deeply.
You may have cliqued values from having Down Syndrome. They don’t have to be bad cliques. They can give you something to look forward to. Something that you like to do. Things that can make you feel a quiet joy.
I may forget from time to time who I am, or think i’m a walking talking clique of my diagnosis. But the thing is, my traits and values are pretty loyal. I’ve gathered enough evidence that they work. I kinda like them.
One day you’ll probebly wonder who you are. I think everyone does from time to time.
Just give me a call, we can share stories. Maybe that can help?
My second memoir called “Elusive Identity: The Autism Spectrum and Recreating a Sense of Identity” is now available to order. You can get your electronic copy on Kindle.
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