Starting in the middle

Two days ago, I emailed all my friends and family to let them know about a quest I’ve embarked on to raise $50,000 for the Developmental Medicine Center at the Childrens Hospital Boston. This might seem like a good place to start my blog, since it is in fact a kind of start to this whole thing, but in fact at this point, it’s kind of the middle (though it wont seem so 7 months from now).

Fifty-thousand dollars is a lot of money, and the way I plan to raise this money will be challenging. So why do this? How will I do it? You can read all about it by clicking here. But the synopsis is this: I have an autistic son (Julien), and we are reminded daily how different he is and how difficult his life will be in subtle and not so subtle ways.

Most people that know Julien know him to be a very sweet though sometimes peculiar boy. He seems shy when you meet him because he wont look at your eyes and tends to be somewhat expressionless and withdrawn. Although no one talks about it with us, I know people notice that he doesn’t seem to know how to interact with other kids.

But kids do notice he’s different, and I can see kids starting to choose his older (adopted) brother Seth over him. We have seen other children teaming up to taunt Julien, knowing that his buttons are easily pushed. Invariably this leads to one of the meltdowns for which Julien is so famous.

If you haven’t seen Julien get upset, you don’t really know how upset a child can get. I’m sure that you’ve seen a child throw a tantrum, where he’s screaming, crying and on the floor. But Julien’s tantrums can be horrifying. He comes after you with his nails (we try to keep them really short), he throws furniture, knocks plates, glasses and frames off tables, tears up things (e.g. Kerstin’s artwork), and worst of all he threatens very graphically to harm you. When he’s upset, it frequently takes 30 minutes to cool him down. Naturally, this doesn’t help his social standing amongst the kids.

And it definitely doesn’t help at school. Julien has spent more than 15 days out of the classroom because of disruptions created by his outbursts. The kids don’t want to play with him during recess and he no longer gets invited to birthday parties. His behavior has perplexed the school which has enlisted a behaviorist to help the teachers know how to deal with him. The principal has told me that there’s no student she worries about more. Does she worry for him or for the other kids? I am not sure, but I have to guess it’s more for the other kids. Fair enough.

So, back to the start of this blog…why is this not the start of my campaign to raise this money? In truth, my wife and I have been discussing raising funds for Autism research since about January. I looked around at the various organizations that fund research (the bigger ones are Autism Speaks, Organization for Autism Research and Cure Autism Now) and spoke to each of their representatives. But then I realized that I would need help in this effort, so I reached out to several families that are in the same situation as we are.

These folks have become my “Core Team”, providing me advice, support and their commitment in this fight. They also steered me towards the Childrens Hospital Boston DMC because they’ve seen tremendous results with their own children. So you might ask, what do these folks do exactly that’s so miraculous?

Well you probably know that Autism is not yet curable, but it is treatable. Treatment of the symptoms is accomplished through a variety of methods; Julien undergoes weekly behavior modification (ABA), play therapy, speech therapy, and uses Picture Exchange Communication Systems to convey requests, needs and desires. We’re considering also using medication to treat some of his severe mood swings and Obsessive Compulsive behavior, though we’re treading very, very carefully into this area. We’ve also tried modifying his diet to no avail (it works for some of our friends).

The tricky thing about Autism is that it’s a kind of catch-all diagnosis for a lot of different neurological disorder with varying degrees of symptoms. So, the options for treating Autism can be overwhelming…there are so many available that one could literally spend all of their time trying to find the right lever to tone down the undesired behavior. The DMC is staffed by a very experienced set of Doctors that do nothing but customize treatments for children like Julien adding pharmaceutical intervention when necessary, advising on what the right resources the school should provide are, and ensuring that no part of the treatment formula has been ignored.

The DMC is also staffed with a set of research scientists that are working diligently to find a cure to Autism. Their clinical research project is building a database of physical and behavioral characteristics of autistic children to match against genetic arrays. The hope, of course, is that the doctors will be able to find patterns in the data that lead to to the cause of autism…once the cause is established, the solution will follow.

This is probably more than enough for a first entry. Tomorrow I’ll write about the training I’ve been undergoing and some of the ways I plan to enlist support from others. Over time, I’ll share news about Julien, photos of the events I take part in, and successes attained. I’ll look forward to your feedback and requests and, of course, to your support.