Thursday, May 25, 2006

Bragging Rights

Like every mother, I like to brag about my children. I can find just about any reason to talk at length about how wonderful they are; How amazing and fun they are. Sammy started walking at nine months and one week of age! When he was 18 months old, Oliver could name all of his body parts in both English and German! My boys never cease to amaze me and I can't tell them often enough how proud they make me.

But sometimes I feel uneasy when I relate some achievement of Oliver's to my friends. Like when Oliver rode his tricycle after months and months of effort. Or when he actually engages his younger brother by looking him fully in the face for even just a minute. Or when he sings Twinkle, Twinkle, Little Star. Or, like last night when, upon request, he told his father "It's time to eat!" for the first time in over a year. These are the Golden moments of parenting a child with autism. Like any other mother, I want to share with the people in my life just how amazing I think Oliver is. But it is not lost on me how my golden moments might seem, well, pathetic to some. I can only imagine how I might respond to similar tales if both of my children were neuro-typical and I had no other frame of reference. I imagine that it is hard for people to understand how much work goes into any small achievement for our children with autism. And parents of children with autism know what goes into supporting our children so that they can achieve. The logistics. The scheduling. The finances. The emotional strain. The love. The fear. But all of this is within the context of hope. We hope the very best for our children and so would do no less than everything in our power. Every accomplishment then, no matter how small, nourishes the closely-held flame of hope that we carry with us as we make our way day-in and day-out.

Other than this blog, I don't share our challenges and triumphs with many. The line between pity and piety is not one that I wish to walk and so I mostly share the dirt and the gold of raising a child with autism with the many, wonderful autism professionals in our life. I have often considered what an isolating factor autism has been in our lives, which is especially ironic given the root of the word.

These are the thoughts I had after viewing the 13-minute documentary Autism Every Day and then reading many of the commentaries that have been written about it, mostly critical in nature. This is a film that shows all of the dirt but none of the gold. Is that wrong? Well maybe. But it is a start. Perhaps it will help people to understand why Oliver sits on the sidewalk in front of our house shrieking when he can't go for a car ride. Perhaps it will help people understand why it is cause for celebration when he doesn't. And so while I am disappointed in things about the documentary I am interested in seeing where it will take us. There is another tale to be told. Let's hope that the next 13 minutes of film devoted to autism shines like gold.



9 comments:

  1. I know exactly what you mean. I'm still celebrating the fact that my almost 4-year old (in August) just jumped for the first time two weeks ago and is now jumping at every chance. I marvel in his jumping on the bed, jumping on his trampoline, jumping on the floor. Friends try to share in my joy, but you can always tell that they are boggled.
    We need to keep celebrating our amazing kids and remember to not compare them to anyone, NT or otherwise!!!

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  2. Well written post. I love the honest thoughts. I too felt as you, especially because our closest family is 6 hours a day, and they don't get to see what every day can be like. Thanks for bragging.

    Melissa-our 4 year Sam just start jumping with both legs too. Thanks to lots of OT and home practice.

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  3. I can sure relate to your post. Thanks for taking the time to thoughtfully write down what I am often too lazy to do. Great for Oliver! I wish he were closer to us so he and Alexander could play together.

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  4. Keep bragging to us, you know we understand!

    I still forget that parents of NT kids don't get how huge every small accomplishment is for our kids, until I hear their pity response of "Oh, that's great" with very little enthusiasm and then I remember.

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  5. I remember my friends were baffled when I bragged that C had finally clapped...at 2.5!! I think we're all in the same boat with ya!

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  6. Bragging is good----you're starting the trend towards autism gold.

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  7. Anonymous6:28 PM

    oh christine, you put my feelings on this video into words precisely. it's why i, ultimately, was glad i watched it, despite my problems with it. i was just thinking today of the question i would pose to those who found this piece so despicable: is there no room in the discussion for the point of view of the NT parent of the ASD child? NT parents of NT kids have the room to talk about what's hard without having to immediately name all that is wonderful, without having to immediately dance around convincing everyone of their devotion, admiration, and love. they can toss up their hands and say, man, this is hard, and the other people in the room nod along and say, yup, it sure is hard sometimes. is there no room for NT parents of the ASD child to say the same? to say, come see what i mean by hard, come see how it's different. not to pity. not to pry. just to see. it's not the whole conversation by a long shot and there is plenty of gold, as you say, plenty of gold.

    most important: three cheers for oliver!!!

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  8. oops! that was me! i thought i put in my name but i forgot!

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  9. Isn't it the truth that our ASD community can understand how the smallest milestones can be taken for granted all the time. We bask in anything small because we know otherwise.....IT'S HUGE!!

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