I am currently taking a course on educating individuals with autism. One of our resources is a book written by the mother of two children on the spectrum. It has been bringing up my experience with autism.
"Like most moms in this age of technology, when I have a questions or problem, one of the places I go for information is the Internet. After the first weeks of receiving a diagnosis of autism for my son, Von, I hit the Internet in search of something, anything, that might help me understand and ultimately help my child. I came across two very different inspirational analogies on having a child on the spectrum. The first was entitled, “Welcome to Holland.” Basically, it likened having a child to planning a trip to Italy. You planned on going to Italy but you wound up in Holland instead. Not a bad place, not what you planned, just different. The other was entitled “Welcome to Beirut.” It described life in a war zone; dodging bullets, trying to get on board an overcrowded helicopter, bribing officials......not a peaceful countryside with windmills.
Where am I at? In the early days, my life looked and felt like Beirut. Constant battles with school and teachers for modifications and accommodations to my sons day, fighting the insurance company to cover my son’s behavior therapy, walking on eggshells to try and not set my son off into a full blown meltdown. I think those were the most gruesome of the battles, the war going on inside my son. He had these inner demons trying to keep him locked inside himself. The early days were bad. No eye contact, little verbal communication, no connection. His reactions were volatile and self-injurious. I have to admit, this scared me. I realized very quickly that it had to be scary for him too. I’ll never forget a time after a particularly nasty meltdown that I gathered him into my lap on the floor, rocking him and telling him that I understood him. He instantly relaxed. He had been waiting for someone to finally get him, understand that this was not his fault. He didn’t want to behave like this and that it scared him too.
The battles waged on and I found other moms and dads stuck in the same war. We poured over research articles, and education law, traded doctors and therapists phone numbers, talked about which teachers to try to get and which to avoid. I found angels disguised as teachers in the field of special education. Mrs. G. is one of those angels. Over the course of the three years that Von was at his elementary school, Mrs. G. was bitten, hit and kicked by my son numerous times. This never stopped her from seeing the sweet boy that was trapped inside this sometimes monstrous body. I could never repay her for her devotion and compassion.
Over the years, with the aid of many therapies, modifications, accommodations and a lot of hard work on mine and Von’s part, Von is doing extremely well. He is able to voice his emotions, self-regulate much better, make and keep friends, be on the honor roll in school and play in the school band.
I ran into Mrs. G. recently and shared with her the good news of Von’s progress. She broke into tears and hugged me. I guess I was able to repay her something for all her hard work.
I no longer feel like I am in Beirut but it is not quite Holland. I’m somewhere in between. Welcome to my world."
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| Date: Wed February 3, 2010
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Registered: August 2008
Location: Cleveland-ish, Ohio