Wednesday, May 16, 2012

Autism Support and Encouragement

Give the threads and a few private messages I've received, I'll just bet there are folks out there who need support and encouragement in raising children with autism.

My son was diagnosed with Autism at the age of 2. He was stereotypical of the new flavor of Autism. He developed normally up to about two years old then started regressing. He didn't make good eye contact. No joint attention. We when found out my wife started researching therapy programs. We discussed the alternatives and settled on the Lovaas program. We even met with Ivar Lovaas to discuss the therapy. Think of training a dog. That's pretty much how it's done. Repetative discreet trials until the kids get it.

My wife quit her job to stay home and run the program. College aged tutors were coming and going 8 hours a day at our home. One bedroom turned into a classroom. He had to be taught EVERYTHING through discrete trials. As the days months and years went by we began to see improvement. All this work took a toll on my wife, along with a new baby. We were scared this one would be autistic too but she turned out fine. Perfect and precious.

He was also diagnosed with moderate to sever hearing loss which happened when he had a high fever as a baby. This was easily corrected with hearing aids.

We had to deal with so much self-stimulatory behavior (or "stims") over the years. From spinning, to backing up, going forward, backing up, hand flapping, sticking his shirt over his mouth, etc. Each time we'd work to extinguish one, another would show up to take it's place. The hardest to deal with were the SIB's or self-injurious behaviors. He could deal with physical pain much better than emotional pain. So every time he got stressed or upset, he stop, start crying and bang his head on the ground. As he got older and stronger he stopped this I guess because it really started to hurt!

My wife fought like a tigress to get him the services he was entitled to. The schools simply didn't want to provide the services they were legally required to provide. I remember one notable IEP where everyone up to the supervisor of the county board of education was there. My wife and I walked in with our huge book of special ed law, and a lawyer in tow. It was amazing how nice to us the supervisor of the board of education suddenly became. My wife found a lawyer that specialized in family law, specifically special education. What a woman.

We took him out of school for a time while my wife home schooled both our children. It was funny that the same school system that didn't want to provide services, discouraged us from taking him home to school. Their reasoning was that my wife didn't have any expertise in autism. Excuse me? WE. LIVE. WITH. HIM. There is not better expert on my autistic son than my wife. We have recently put him back in public school because as he has started to mature he is developing the same independent spirit that any teen-aged boy does. I actually take this as a good sign. So we put him in high school so he could be with peers.

Now at the ripe old age of 20 he is about to earn a certificate of completion from high school. It's not a diploma but he doesn't care. It's a rite of passage. He'll get to wear a cap and gown and walk with the other seniors and he's very happy about that. We are not starting to look into independent living arrangements for him. While we'd love to have him stay, his anger issues with being corrected by my wife are just not acceptable. Besides, I don't think she'll survive another 20 years with my son.

He is a great young man. He loves camping, the outdoors in general, is always smiling (when he's not angry), and loves people. He has expressed a belief in God, believes Christ died for his sins, and prays for "all the boys and girls" at his high school. I am proud of him despite his quirks.

But... I am most proud of my wife. Through all the pain, the grief, the tears, the joys, the laughter, she still managed to be a woman for me. She cooked for us, she washed our clothes, she ran an in-home tutor program for my son, she made my lunch, our dinner, she had sex with me as often as I desired. Even when she was dead tired. Sometimes she would just cry. She would say it was not because she was upset with our son or myself but that it was like sweating to her. She just needed to get it out. I know better now, the fact is, she did cry because of us, and sometimes just because of her situation. I wasn't always there for her. I was hurtful, pushy, not very understanding at times, selfish. There were times when I would come home and the entire family was crying because of my son's actions or emotions. Sometimes I just wanted to walk out the door.

I never did. I never will. One look at that precious angel that is my wife and... where would I go. Her capacity for love is just without equal. My son would not be who he is today without her. I would not be who I am without her. It's all her. And I will spend the rest of my life thanking her.

michael madsen spring forward day light savings day light savings daylight saving time 2012 grapes of wrath silent house

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