Thursday, April 1, 2010

Our Story; For Autism Awareness Day Part 2


Receiving the Aspergers diagnosis was like finding the Rosetta stone. Suddenly we got it. It all made sense. So the mourning period for that now deceased ideal picture of what their and our lives would be like, was really very short. We had already been watching that picture pale and decay for years, we just hadn't known why, and now we did. The relief of this swiftly dispatched any vestiges of sadness after the initial surprise and "WTF is Aspergers?" stage wore off.

I, of course, got to work straight away (Hermione), burying myself in a pile of books and scouring the internet for information. I realized that we had to make some changes in the way we parented. We had to become detectives, discovering the underlying sensory stresses that were causing our sons to act out and then figuring out how to mitigate them. We had to become even more scheduled and routine. We had to let some things go and push harder on others. But we also realized, and finally had affirmed, the fact that we had been doing a very good job all along. Suddenly we were being complimented on how intuitive and balanced our parenting had been. After years of doubt and guilt, this was huge.

I soon realized how true all of the Aspergers information that I was devouring was, not just for our sons, but for myself as well. It is undeniable that my boys take after me...from the anxiety to the sensory processing issues to the awkward, awkward social awkwardness (did I mention awkward?) the little apples aren't falling far. But each of my sons' difficulties are much, much more profound than mine ever were. I likely could have squeaked an ASD* diagnosis as a child, but have learned to cope and function quite well over the years, and don't feel like there is any point in seeking assessment now. Still, a lot of stuff makes a lot more sense now.

In the two years since receiving the diagnosis of Aspergers for both of our sons (along with GAD, ADHD, and for one son OCD as well. These being commonly comorbid to autism, although there is speculation about whether ADHD should be separately dxed, but that's probably a whole other blog post.), we have gotten involved with various organizations and services to benefit our sons. We have seen social workers, occupational therapists, speech therapists, psychologists, psychiatrists, respite workers and various autism education specialists. It is a little overwhelming at times, but wonderful not to be left figuring it all out on our own anymore. We are very lucky to live in Canada where most of this support is provided for free (although there are long waits involved).

The one area where there is still ongoing struggle for our family is with school. My sons are very bright, but that does not necessarily lend itself to the learning of the three "R's", especially in a noisy, unpredictable classroom. Despite all the services and accommodations now in place, the concerted efforts of one of the best schools in the city and a dedicated advocating mom they both continue to find school exhausting and overwhelming, and are slowly falling farther and farther behind. This is a current and continuing source of much worry and stress.

So the original question was, what exactly does Aspergers/autism mean to us?

It means:

An answer. Like I said, getting the dx was like finding a Rosetta stone. We now have answers. For example: an answer to the perplexing highs and lows that are typical for ASD kids. Both our sons' vocabularies are off the charts. They often sound like "little professors" when they speak. But their processing speeds are rock bottom, which means although they sound very, very smart (and are) they may have no idea what you have just said to them or asked them to do. They need extra time for each task, or to respond to a question. This makes learning and communicating a challenge, and teaching them a completely baffling experience unless you know them and/or ASD well. We now understand, and can teach them better.

An opportunity. An opportunity to value the way that they and we see the world, instead of striving fruitlessly after "normal". My children are not broken. They are not diseased or disabled. They are different. Their brains process the world differently, and along with all the struggles, this can be a beautiful thing. One of my absolute favourite parts of Aspergers are the "special interests". The DSM IV says it is an,
"...encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus"
And yeah, that doesn't sound so great, but what this actually means in day to day life is that Aspies get mad, crazy passionate about what they like! Whether it be trains or cars or subway maps, they will immerse themselves in learning every detail. Get them talking about it, and many will go on happily for hours. It is a source of great pleasure, comfort and fun. Our sons interests have ranged from trains to dinos to turtles & crocs, Bionicle, Lego and Star Wars (nothing but Star Wars, all of the time!). Along the way we have researched, written stories, made art, gone on field trips, collected and learned right along with them. I love supporting their Big, Mad Passions. Having a few BMP's myself, I totally get and enjoy this. These special interests make life much richer. I highly recommend you NT folks (neurologically typical) start cultivating one immediately!

A challenge to be our best. We all need to be challenged to excel. My boys require a lot more patience, sensitivity, insight and energy from their caregivers than the average kid. They need us to be calm, consistent and logical. They need us to meet anger with love, and panic with peace. They need us to be brave, to never give up on helping them make sense of the world around them, and on advocating for the world to accept and help them, and to never fail in our optimistic vision of who they can be and what they can accomplish in this world. I fall short of what they need frequently, but I never stop learning and trying to do better. I feel so blessed that they have challenged me to become a better mother and person than I ever would have otherwise been.

~

*The DH said I should include a key for all the abbreviations.
AS= Aspergers Syndrome, ASD= Autism Spectrum Disorder, HFA= High Functioning Autism, ADHD= Attention Deficit Hyperactivity Disorder, GAD= Generalized Anxiety Disorder, OCD= Obsessive Compulsive Disorder, dx= diagnosis/diagnose, dxed=diagnosed, NT=neurologically typical (in other words not autistic, no mental disorders...so very few people I know are NT :), DSM IV=Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (like the Big Book of Mental disorders that a psych. would use to dx from, current edition)

{I am off to make a Strawberry Cream Cake for Easter, but I wish I could write just a leetle bit more on this topic, being one very near and dear to my heart. So part 3 will be following tomorrow. I would like to do a bit of an FAQ about Aspergers/HFA, because there are things I get asked over and over again. Followed by a list of things I wish everyone knew about AS/HFA. If you have any questions you'd like answered feel free to leave them in comments. xo and Happy Autism Awareness Day to you all!}

6 comments:

  1. reading these last 2 posts was interesting in the way that it created two different pictures of you in my mind's eye. post one~ the E of robes and rubber boots and hair long and loose.

    post two~ i pictured you talking to me and pulling your hair back in a bun and putting on a pair of spectacles whilst you searched for your board pointer.

    excellent posts. keep 'em coming.

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  2. Happy AA Day to you too, boo boo, woooHOOOO. I'll stop. Another great post. I love BMPs too and reco them to all. I've always called them my "kicks." I suspect I would show up somewhere along the spectrum. I was thinking how to send thousands/millions here and then I thought maybe a dedicated website? And, most definitely, a book. Whadayathink? deb

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  3. I love the BIG MAD PASSION of theirs, it is contagious and brings so many more interesting things to my life! Its just sad when a new BMP over takes the the last one!

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  4. So well written and v. well explained and brings a new light to the situation in many ways for me, although I was already familiar with ASD.

    Re: challenge to be our best. Isn't that what every child needs? To have anger met with love and panic with peace? A few more parents could stand to foster these qualities in themselves.

    comorbid=new word for me.

    And BMP! Love it. Love them. Could stand to have a few more of them myself.

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  5. @Craig Thanks, I am definitely both of those pictures...if I only I could still take walks in my bathrobe and rubber boots...

    @Deb Yes, I am sure you have your own pinch of autism too! It's a funny thing autism...like salt, just a little pinch can be a very good thing, but too much has disastrous consequences. I definitely wouldn't presume to speak for any parents of and people with LFA (low functioning autism). It is a completely different ball game and a more profound struggle in every way. And a book, maybe something fictional with an Aspie character? I think I'll have to leave the non fiction to those without ADHD...wanders off in search of next shiny object... ;)

    @Krowe Thanks. And yes, definitely every child needs that. For sure. I think with E&L though, they have demanded it at every stage along the way...I had no choice but to shape up. They were my persistent, insistent, high-needs little kicks to the pants. LOl
    And yes, BMP's are the only way to live! :)

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  6. And @Elizabeth, I couldn't agree more! Love the BMP's! Love having them myself and love seeing and supporting them in others. It took me forever to even realize that other people don't necessarily get as OTT passionate about things as I do, and when I did realize it...I was actually kind of disappointed and sorry for them. So glad my kids do get really focused and driven when it comes to the things they love. Now, we just have to channel this into careers for them. That is the challenge.

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