Wednesday, July 07, 2010

My Brother Has Autism.

I was at the pharmacy yesterday, picking up my bag ‘o drugs (mostly allergy related). Of course, I had Max with me, and of course he was objecting loudly about the wait. The pharmacist came to the counter with my meds and started walking me through the new prescriptions (potential side effects, YAY!, etc). Max continued to whine loudly, causing her to look over at him, perched in the grocery cart, attempting to get out. I felt like I needed to explain why he was whining, that he wasn’t a poorly behaved 4 year old, so I said “he has a diagnosis of Autism”. But I think she already knew that, and in the blink of an eye, she had come around the counter and was standing right in front of Max, looking him in the eyes and introducing herself. She went on to tell me that her 17 year old brother has Autism. I inquired as to how he was doing, hoping for a good news story. She hesitated and told me that her brother is severely Autistic, and completely non-verbal, that back in 1994 there wasn’t the therapy there is now. In fact, when her brother was diagnosed, the blame for his Autism was placed squarely on her mother’s shoulders because she must have been a “Refrigerator Mom” (cold and unloving) to cause him to be so detached from the world.

Hearing that stung. I can’t even imagine how that must have felt for her mother. I already feel so much guilt about Max having Autism. I know it's irrational, but I carry it with me every day. I do wonder if there is something I did to cause it. One of my friends who has a son with Autism jokes that she believes all of the cheese whiz she ate during her pregnancy must have caused it. There are 6 children with Autism within 2 blocks of our house. I often wonder if the Ford plant in the city we live in contributed to Max’s disorder. But nobody has ever suggested that Max has Autism because I was an unloving mother. I think that would have killed me.

The pharmacist went on to tell me that Max’s eye contact blew her away, that she had crawled on the floor for 3 years, getting in her brother’s face before she got him to look at her. While I worry that Max’s squawking and objecting is bothersome to those who aren’t familiar with him, she thought that the fact that he was singing, greeted her and said “good bye” was amazing. Meeting Max probably made her day. I am finding I meet people who are directly affected by Autism more and more. They are “my people” and they are everywhere. One day Cameron will be in the same situation as this pharmacist, but she'll be able to share her brother's great success story.

6 comments:

  1. That poor mother! Refridgerator? Unreal! I'm sure max will go on to inspire everywhere he goes!

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  2. They are everywhere and we live with similar guilts and frustrations Kat.

    Khaled likes to watch the coffee beans spill everywhere when he turns the knob on the coffee bean dispenser thingie in loblaws. Good times.
    He gets lots of looks also because he is a loud boy, has a mischievious grin and is obviously super smart. So add to that my scowl and dishevelled look, a lot of the times we do come across as a crazy pair. Incompetent mother with badly behaved child etc.

    Little do people know, I also talk to myself out loud in private and have a very large pen collection. And I mean we are talking 200+ pens.

    Someone once told me that because I let Khaled walk in to the toilet when he was younger, while I was in their doing my business, made him speech delayed.

    Lots of random facts for you there.

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  3. It is interesting to hear this two generational bit of narrative. I wonder what my mom was thinking dragging around me as an autistic child. She won't talk about it really. But then again, she seems pretty content to have me as an autistic adult. I hope you never succeed in your goal in life if "My goal in life is to beat Autism." but I hope the goal changes to something like "My goal in life is to beat the negative impacts of Autism on children". Autism faces us with a challenge, but it not a curse; no more than consciousness or reason is a curse. We'd be happier without upper level brain functions, no doubt, but we'd cease to be who we are. same for Auties. We should all fight to alleviate pain and suffering in the lives of others... but often that requires us to change the world to allow the sufferer to find a way to live and be that is in line with who they are. How to unlock the potential for joys in the child vs normalizing behaviour. How to find a way to help those who are frustrated find a way to where they want to be. That's a noble goal, and something we all can work towards. I'd be devastated if I thought I was to be changed into someone else because I was too strange, but I'm always over joyed when someone takes the effort to help me find a space to be myself within a larger social context.

    it is a tough struggle for you both, but worth it.

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  4. Anonymous3:22 PM

    Thank you Complicity Theory. I am a frequenter of this blog and as a mother to a young boy with HFA, I share many sentiments that are expressed here but I do feel the same way as you regarding the perception of autism as something to be beaten.

    When my son was first diagnosed I did feel that I had to cure autism but now I have accepted the autism as it is an integral part of who my son is. It is not my son's autism that I need to fight, but rather it society's intolerance and the constant reluctance to accept differences that we face on a daily basis.

    We face many difficulties with our son but I never want him to grow up to feel that he is a burden. I am not suggesting that the author of this blog is saying this but when autism is depicted negatively, I can't help but wonder how my son will feel when he gets older. I never want him to think that something is wrong with him. I also don't want pity from people.

    My goal is for my son to grow and be successful and happy not in spite of his autism, but because of it.

    I know that other families have a different experience and feel that they need to beat autism. I can't speak to their experiences. I just know that for my family autism is not a curse or a burden. It's the lack of support, services and understanding that I want to fight.

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  5. Anonymous5:31 PM

    I think that the particular manifestation of the condition might determine how much one wants to "beat it." Sleepless nights for parents, feces smeared on walls repeatedly, hours of screaming and wailing for reasons one cannot determine, might make you want to "beat" autism.

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  6. Anonymous5:37 PM

    Imagine what it'll be like in the next years! Therapy will be that much better, more knowledge = better results. The hard work of those before you is paying off, and your hard work will bring great help to the future kids yet to come. Inspiring!!! Congratulations to all who keep raising funds for research, and continue to actively share your experiences!

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