Wednesday, October 15, 2008

October Ovation

My good writer-friend, Barrie Summy, whose debut middle grade book, I So Don't Do Mysteries, will be released in December, asked me to join in a blog round-up today -- an October Ovation.

The idea is to blog about someone you admire.

I spent a fair bit of time thinking about this post, because there are plenty of people, famous or not, alive or not, friends and family or not, whom I admire, but in the end, I decided to blog about my older sister.

I've always admired her. I mean, she's my big sister; ergo, it was my job to look up to her. At least that's what she always told me. ;-) But in the past almost five years that admiration has increased tenfold. (Exactly ten times. I did the math.) Why the increase? Because of the fabulous and brave and mature and caring way she's coped with the, at first devastating, news that her son, my lovely nephew, has autism. Something that was confirmed just a month shy of his third birthday.

Now, before I start getting hate mail, I know that autism isn't necessarily a devastating diagnosis -- certainly not compared to parents who face news that their children have terminal illnesses -- but any parent (or auntie) hates to hear that their child will face special challenges in life. And let's face it, a certain percentage of kids with autism never grow to be independent adults, so the diagnosis is scary.

Scary for that easy-to-guess reason, but also scary because the medical community offers parents virtually no answers, virtually no hope or guarantees or even guesses at whether their child will be able to function at school or in society as a whole. And gives them virtually no guidance or advice in how to improve the odds.

So parents are left to sift through information from a variety of non-medical sources, to evaluate theories that often conflict and are advocated or disparaged by heated opinions, and to cope with stress upon stress upon stress. (It was only a few decades ago, that doctors were still blaming autism on the mothers for not showing their kids enough affection. Can you believe it?) But instead of sticking her head in the sand, or getting overwhelmed, my sister got educated. She sifted through all the conflicting information and fought to get therapies to help her son. If a particular therapy, or supplement, or diet made sense to her and the source recommending it was reliable, she tried it.

As an example, my nephew is one child with autism who responded to a modified diet. I've seen the clear evidence of that. (My nephew, after eating wheat pasta or bread, looks and acts like a drunk on too many martinis, and many foods not only make him spacy, but also give him severe diarrhea. And yet, most doctors still insist these diets are bogus and have no effect on autism!)

So diet helps him, but it's a lot of work to feed a child on a gluten free, cassien free, egg free, many-other-things free diet. It was even a challenge to figure out which diet modifications made a difference and which did not. And who had to deal with all that? Primarily my sister. So she learned how to bake and cook without virtually any grains except rice -- and no corn and no dairy and no soy. (Just read a few labels to see how few foods contain neither dairy nor corn nor soy.) She learned ways to get her son and the rest of her family to eat a very different diet and, for example, make sure knives that had been used to spread something on wheat or even spelt breads don't contaminate food that he can eat.

And in stating my admiration for my sister, giving her an October Ovation, I don't want to diminish my brother-in-law's role in dealing with the autism in their family. I know he was initially skeptical about some of the therapies that she wanted to try (my sister already believed in homeopathic health techniques before the diagnosis, and he has siblings who are medical doctors who still scoff at the idea that diet and supplements affect autism) but again, he got educated. He read and went to conferences and listened to the scientific evidence. He, too observed the positive effect that the modified diet and behavioral therapies had on his son and threw his support behind everything they as parents decided to try.

And I should also throw a complementary ovation to my niece. Not yet six when her brother was diagnosed, she saw her life change as more of the family resources and attention became dedicated to him. She's seen the food put on her plate at family meals change. Favorite desserts and meals removed from rotation. The number of treats, dwindle so that her brother won't get jealous or tempted when he gets an apple and she gets a cookie. And she's been a real trooper, a dedicated and loving big sister.

And finally, I'd be remiss to not offer part of my October Ovation to my nephew. He puts up with swallowing pills before meals, and getting shots, and having blood taken, and dealing with a schedule filled with ABA therapists and speech therapists and occupational therapists, that was busier, even back when he was a three year old, than many teenagers have. He's worked hard. And it's paying off. He's a happy, generous, creative kid with a great sense of humour who definitely defies the notion that children with autism don't care whether or not they have friends or whether people like them. He cares. He tries so hard. Even asked me for advice on how to make friends with babies when his cousin was born this winter. And as I was drafting this, I found this fabulous photo of my nephew hugging himself. (Didn't I say he was creative???) One of his favourite things when I come to visit is playing with the PhotoBooth application on my MacBook and I think this self-portrait sums up his desire to love and be loved. I love finding little surprises like this, or the one below, after he's borrowed my laptop. (More than makes up for the fingerprints left on the screen.)

Yes, he's got challenges, he has more trouble concentrating and expressing himself verbally than many children his age, and as a result has trouble forming friendships in his grade 2 class. But he's a voracious reader and a lovely, lovely boy.

And for giving birth to him and supporting him and cooking for him and fighting for the best for him, I offer my October Ovation to my sister and her family.

Here are some links to other October Ovations:

http://barriesummy.blogspot.com
http://www.seizeadaisy.blogspot.com

Check out who others are cheering about.

15 comments:

debra said...

What a lovely tribute to your sister and her husband, AND to your nephew. Thank you.

Wylie Kinson said...

Powerful and moving post, Mz Maureen. I'm on my feet clapping for your sister and nephew :)

beckylevine said...

Maureen,

I have someone in my life going through a similar experience, and all the things you said about the admiration are so true. The courage and the strength to work at staying steady and even amaze me.

Thank you for this lovely post. Your sister and family are also lucky to have you in their lives.

Jason said...

This is a beautiful post, and very moving.

Barrie said...

Wow, Maureen. What a great post. I think we'll give you a pat on the back too. I know from our conversations that you've been a wonderful aunt and sister!

Patti said...

wow. i'm sure your sister will cry when she reads this.

Larramie said...

With your sister -- and the entire family -- supported with information and surrounding your nephew with love, he really will grow to be more than anyone can dream.

gabe said...

Totally touching tribute! And as a hopeful p.s., I want to mention that a co-worker's autistic son is a successful, independent adult now - so keep believing!

Travis Erwin said...

A very touching tribute.

Shari said...

Your sister sounds amazing. :) Thanks for sharing this inspiring story. (Oh, and finding cool pics on your laptop after dear nephew's been at it? priceless!)

L.A. Mitchell said...

Wow, Maureen, what a wonderfully positive thing to read about today. Your love for your family shines through :)

Nelsa said...

What a heartfelt and moving post, Maureen. Your nephew, despite the challenges he may face, has a wonderful family full of support and what a truly lucky child he is. And how lucky are you to be his aunt? He's beautiful...

Molly O'Keefe said...

amazing

Marilyn Brant said...

What a beautiful post... I'm sure your sister will be so touched when you share it with her. Loved the photos of your nephew, too!

Alli said...

Maureen, what a fabulous and inspiring post. Your sister and her family (and you) all deserve an ovation for the love and caring for a sweet little boy.

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