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hopeful hopeless hopeful again October 21, 2009

Posted by caizooka in Uncategorized.
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To continue upon yesterday’s topic of being hopeful….

 

Hopeful. That is how I felt when O was first diagnosed in August. As I’ve been through the diagnosis process, through the Autism Speaks Walk, through the Seattle Childrens Astar Autism Auction, through the Tessera Conference ‘Restoring Hope’, and now through the appointment with the family social worker from Children’s Autism Center…I feel way less hope that I felt a mere two months ago. This is not what I expected. I wanted to feel more hope. Instead I feel desperate for any hope that anyone will offer. Hopeless. What snake oil should I purchase to make my son better?! I have heard parents, social workers, and top notch doctors say that ‘there is no cure for autism’ ‘there is little you can do, but you can try’ ‘I’m so sorry…’ How is one supposed to feel hearing those words about their child’s prognosis? But, I look at my little guy and I need to feel hope. His brothers need me to be the hopeful one, so does my husband. That is my job. Where am I supposed to draw hope from? Heading into this I felt like there were going to be so many options, so many directions to finding the right cure for my son. I’m not hearing that. I’m hearing the opposite. Do I just manufacture hope so that my kids feel hopeful or is that deceiving them and me? Maybe a daily trip to Mr. Roger’s Neighborhood of Makebelieve isn’t such a bad thing…

 

I found it ironic that the name of the conference the other day was called ‘Restoring Hope’ because that is not how I felt when I left. It seems like a large portion of the audience were that of parents of lower functioning autistic children. People who had been worn down more and had less hope. Parents who used to have a sparkle in their eye, but that has since faded because they have tried every snake oil out there. They have tried every therapy, every diet, every medicine, but their child still cannot communicate with them. I don’t know how they still remain hopeful and happy, but there were! Being new to this, perhaps this wasn’t the right time for me try and understand this side of autism. There were fewer people that were there that represented the parent group of higher functioning autistic children. We all have similar issues, yet very different ones as well.

 

The absolutely cutest thing happened the other day.  My mom greeted O as he was getting off of the school bus from View Ridge.  Apparently Oliver said, ‘Grandma, I’d like to introduce you to my new bus driver, Sandy’. Granted, the words that he used were straight out of Finding Nemo, but nonetheless, this gives me hope. The fact that a year ago, this little guy couldn’t speak more than a couple of words and spaced out more than half of his awake hours, spending them in a distant land that we weren’t able to access, for this little guy to make such a wonderful statement, I’m DAMN proud! He borrowed the words, the tone, the inflection, but he used it entirely in context. He is smart enough to utilize this kind of speech to communicate his point. He will make it. I know he will. I believe! Hopeful again…

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Comments»

1. Mom - October 22, 2009

Yes, look to the positive and be hopeful. I think the way you are meeting parents of autistic kids and sharing experiences, educational opportunities, and the definition of autism itself (seems to change from kid to kid!), I think you are showing great hope. I have such hope for this little guy and all of you.


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