10.23.2013

How I became an autism advocate

I've been at this for a while now and looking back I have grown so much this past year and a half (only? Seems like 3 lifetimes). I thought I'd outline where I was, where I am now and how I got here.
As some of you know most of the groundwork has been laid already in my childhood. I know what it's like not to fit in, to be "painfully shy" and different. So obviously I am not one to expect my children to skate through social nuances while I am still struggling myself in certain situations. So there's that.
Another experience which honed my skills would have had to be parenting my firstborn. While he isn't yet officially diagnosed with anything we can see he fits the criteria for an autism diagnosis. He was a highly verbal, socially awkward toddler and I spotted him as one of my own right away. He had the works- anxiety, sensory defensiveness, phobias (of everything), extreme picky eating and as a result of all those, meltdowns. But something told me- I can handle him, I don't need to call in the "experts" just yet. He was also sweet and smart and reasonable. So I worked with him, respectfully, gently, persistently. It's a pretty long a story of how I helped him, but the main part was- I looked at his strengths and focused on that. His "deficits", I saw those for what they were- extreme sensitivities.
Shipwreck cruise- makes for a happy boy
Of course I did have the unfair advantage. When in doubt, I'd ask myself "how would I have wanted to be treated in this situation?" This gave me a clue when to back off but also when to push a bit (because, sometimes we feel really anxious but at the same time we really do want to do something- at those times gentle encouragement and plenty of "you can do it!"'s can make a big difference). And now- he's a smart, goofy kid who does have friends (most of which he knows since he was a toddler), loves scouting life and is even doing really well at swimming lessons! (This is the kid which screamed bloody murder at hair washing till 5 years old). Of course he loves all the "Aspie things" too- Minecraft, fantasy/sci-fi, Lego. He is still very cautious, wary of the dark and one big phobia remained - the dentist. But overall, not bad at all.
So that was my warm-up. Of course while I used words like "sensitive", "shy", "anxious like me" I didn't piece together the whole Aspie thing then yet. Just knew that we both required gentle handling. And then, after a perfectly neurotypical, girly extroverted daughter (who was a big help to her brother in his early years), Sophie came along. She looked the most like me but was much more cheerful and serene than I ever was. We knew she was unique but we had no idea what we were in for!
You all know her story by now - the regression, the diagnosis, then the second diagnosis. But this is more about me. You see at first I went through all the stages of grief. At first shock (oh my god, what's happened to my baby?!), denial (once we remove gluten, give supplements, etc she will "bounce back"), anger (stupid world full of toxins and pollution poisons our innocent babies), bargaining (I should've known something was wrong, if only we took her to the ER when she was vomiting, why did the ped not request an MRI when saw her giant head, etc), depression (her life is over, she will remain diapered and institutionalized her whole life, what a sad lot she was given) and finally acceptance (you know what? She is different and that's ok, we will be ok).
And that's what I want to talk about. The jump between depression and acceptance. Because I saw many people get stuck there. It doesn't help that the media via "helpful autism articles" expects us all to be stuck there, because really, anyone would be and rightfully so.
I am an analyst. When faced with overwhelming emotions my instinct is to deconstruct them, break them down, find their root. So, as I was fighting tears and panic and heartbreak I decided to "name my enemy" instead of swinging blindly in the dark.
First thought that came to me- I am sad about the "would-be's". She would have been a cute little chatterbox, would have loved animals, would have played with her brother and sister, would have gone to the nursery school her sister attended, would have play dates with the little girls her age on our street... And I realized- it's not about Sophie. It's about me. All those "would have's" have meaning only because I attached meaning to them. Based on my interests and desires I have formed an image of a cherubic little toddler I would have expected Sophie to be- but it isn't Sophie. If I was a different sort of mom I'd be mourning the loss of a would-be ballerina or a would-be soccer player or a would-be artist. Sophie isn't mourning the loss of those dreams because they were never hers to begin with. As parents we fantasize about what our children will grow up to be. It seldom comes to pass as children pave their own reality (as they should). Yet, when their reality falls outside of what we consider desirable, we reject it, or fight it (it's not just about autism, in some families it could be going against the family profession, or marrying the wrong person, or being the wrong sexual orientation).
Now, I believe if a part of us is still mourning the loss of the child that's "buried under the autism" then that can lead down a destructive path. I've heard people yell at autism, swear at autism, banish autism out of their lives. That goes with the presumption that autism is sort of like a growth that is fused to the typical child's brain and that, with proper handling can be removed, leaving the perfectly intact brain exposed. I choose to see that autism is as much of Sophie's identity as her blue eyes, her infectious grin or her funky hair. You can't excise it from her and uncover a neurotypical Sophie which was hiding there all along. If I claim to love her, I can't make qualifying statements like "I love my child but I don't love her autism". It's like telling me "I love you but I don't like your introvertness" , or "I love you but not your green eyes". I have to think and say "I love you, all of you, exactly as you are".
Many of the therapies were designed to do just that- ideally uncover the hidden neurotypical inside the autistic, or failing that, suppress the obvious autistic behaviour and at least make for a subdued autistic which wouldn't offend "normal" people with his/her otherness. But call me silly, I want more for Sophie. Just like with my son, I don't want to focus on traits which are affecting me negatively. I want to focus mainly on what makes her happy and makes her Sophie. I talk to her and about her as if she understood every word. Because if she doesn't - no harm done. But if she does (and I do believe she does) I never want her to hear anything from her family that would make her feel unvalued or "less than". There's enough of that in this world unfortunately.
No room for nothin' but love
She has started her education and some ABA therapy. I do want her to learn and progress, because I know she is capable of it. I believe the right education is critical. By "right" I mean appropriate to her style of learning and temperament. Her teachers have observed for example that she prefers learning while standing. I confirmed that yes, she isn't much of a sitter- and that's ok. We are focusing on communication however, because if there is one thing I want to give her it is the ability to express herself. I don't care if she does it sitting, standing or hanging upside down (all are possible) she will speak her mind (Or write. Or use pictures. Or sign. You get the idea).
So in a nutshell- how did this introverted Aspie get past her own insecurities and become an advocate, a word she used to associate with banner-wavers and yellers-at-governments'-front steps and petition signers? By firmly and politely saying "yes, she can" to any doubters of Sophie's intelligence. Also saying "yes, she definitely can" if anyone questioned whether allowing her stims was appropriate. By taking her everywhere with us, wherever we would take our other kids. And by viewing "success" as "whatever makes her happy".
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10.07.2013

Much ado about everything

I think it is time for a little update on Soaps. I update Facebook frequently but Sophie has been a busy gal this past month and it'd be good to have it all recorded in one place.

First of all, school! Sophie started her preschool and is loving it. I don't think I can adequately convey my relief at this. Every morning (including weekends) she is anticipating her "buh" (bus). By her teachers' accounts she is happy, engaged, cooperative (reasonably) and tries things she never did at home. She has been playing more with toys, especially sensory-type toys. For a long time she didn't show any interest in holding anything in her hands (other than food) so that is progress. She joins her classmates at snack table and at circle time... In other words, pure amazingness.

Then, ABA group. For Facebook fans, I'm sure you remember my hand-wringing and belly-aching over ABA being scheduled at her nap time. Completely unnecessary. She is a bit drowsy after but LOVES her ABA (I thought it wasn't possible!). It is a PECS-focus group and baby girl loves her some PECS. This is what I posted on Facebook after her first day:

So I decided that I will never worry about Sophie again (I'm joking of course but anyway)

Today as you know was the dreaded "ABA at nap time" that I've been stressing about for the past week. My poor baby was going to not only be denied her afternoon siesta but forced to learn at the same time. I couldn't eat all morning.

So we got off the highway about 5 minutes away from the centre and she fell asleep. "Great" I thought. We got in, I carried both babies in, Sophie slumped over my shoulder. As we were walking to the room she woke up. The room-tiny! With four therapists and four kids including one poor fella who was screaming his little head off. Crowded chaos in other words. I think my face said it all. "I can't leave her in here!" So they gently suggested I put her down and see "how she does".

I put her down expecting I don't know what. Her running for the door maybe. She deliberately walked over to this screaming child, right in front of his therapist who was futilely trying to engage him, grabbed the huge PECS binder that was lying on the table (full of pics of junk food, but I digress) looked at the plethora of sweets apparently on the menu, picked off skittles and smarties and handed to his teacher completely unfazed!

I went to fill out some forms (what else?) and on my way out I peeked in again. She was "talking" with the therapist. We stayed in the neighbourhood so I also spied her playing at the centre's cool playground a bit later on.

She was fine! More than fine, she might actually learn something I gotta stop underestimating this kid...

Last Friday we had 2 ladies come for a home visit regarding evaluating Sophie for AAC technology. It is a rather complicated process but basically means that it is funded by the government if child is proven eligible. She was recommended by her speech therapist last spring when we found out she has Polymicrogyria. So they came, explained the program, oohhhed and aaahhhed over the visuals we have hanging all over our apartment, Sophie showed them she can open binder and request blueberries (she isn't one of those kids that go out of their way to disprove everything mom was just saying - thank goodness). It seems like a low-risk option, there are no contracts or exclusivity clauses - we are free to purchase any tools we see fit for her while under their program. However, going along with them will give Sophie access to a variety of devices to try, which we wouldn't be able to do on our own. They seemed experienced and kind, supported my interest in literacy, and I think we will be able to work well together. Best part, they will now integrate with her school and her ABA group and we will all meet together and brainstorm ideas for Sophie's first device.

On the medical front- we met with the geneticist and it was interesting. She is familiar with the team in Seattle specializing in Polymicrogyria research and the genetic disorders associated with it. She put us in touch and they mailed us a saliva collection kit for us (parents) and Sophie! So fun... They are looking to check if she has one of two specific disorders MPPH or MCAP. It doesn't really mean much, they are both so rare and there isn't a whole lot of information a diagnosis will reveal that we don't know already but yet, another puzzle piece in place.

We are going to see the neurologist this week and that should be interesting as well. Few things I'm hoping to speak about. Oh, and Sophie will have a lot of dental work done, poor thing. And I'm buried in forms. And still waiting on subsidy. And have that feeling I'm forgetting something important... always. And I have 3 other kids with their own appointments and forms and classes. And sometimes I like to sleep and eat and all that stuff. Sometimes. Man, I got tired and overwhelmed writing all that out.

Megalencephaly doesn't sound as cute as it looks

 

 

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