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I live in a small college town in Oregon. I am divorced and work at the university as a web programmer. I like to remodel houses, play around with Drupal, a content management system, and design Direct Instruction curriculum on http://en.wikibooks.org and http://en.wikiversity.org.
In the long term, I would like to acquire a small building between Portland and Eugene to house an "Autism Center."
No such resources exists in Oregon.
When my son was born, he had minor jaundice. The doctors put him under Bilirubin lights for treatment. This caused his body to react as if there was a bacterial infection. Looking at him in the neonatal intensive room, it looked odd to have such a big, healthy looking baby among others. Nevertheless, the hospital got approval for hepatitis B shot the day after he was born. It was a bad start to already poor odds.
After a month, I knew something was a little off. He didn't babel as much as other infants, his eye contact was poor, and he did not imitate or react to the typical goofy faces parents make at their infant. Nevertheless, he was cute and according to his pediatrician "had a good grip and looked healthy." The shots continued - even chicken pox by his first birthday.
By his second birthday, we moved. I noticed he seemed to have lost the ability to imitate the sound of a couple of animals ("what does a dog say?"). I chalked it up to the move.
My son began to attend a corporately run preschool. Here, the staff noted, "He doesn't have the skills of other children his age." The preschool advised to get an evaluation from our Early Intervention services - hey, it was free and better to be safe than sorry.
Early Intervention diagnosed my son with "delayed speech." After 6 months of play-speech therapy, the EI folks called us in. "He's not making as much progress as we hoped. We would like to get him evaluated for autism."
We were devastated. My son's father was in denial while I knew. I grieved for a few weeks until I decided I better do something.
My son received services from Early Intervention. At first he attended a group speech and social program. In learning about Applied Behavior Analysis (ABA), we decided he would not get the intensive and quality treatment he needed. We advocated to have an Early Intervention aide placed in his preschool.
Although this was a common scenario in my area, what wasn't common was the additional therapists I hired to provide one-to-one therapy at the pre-school's sick room. We funded 10 to 20 hours of extra therapy per week. The results were staggering. Lack of true structured therapy from Early Intervention alone will not get results that are absolutely important at an early age. Maybe one day that will change.
Early on, he went through several Early Intervention aides - 4 in a 10 months. Early Intervention was struggling to hire, train, and retain aides. In my town, and across Oregon, Early Intervention aides are hired off the street, paid poorly as temporary workers, and treated badly with hardly any supervision or support. Unfortunately, my son and his classmates suffered. We discussed moving and home schooling as our frustration grew monumentally.
By kindergarten, he was far behind in all skills: reading, writing, coloring, numbers, play skills, and social skills. Yes, he could dress himself and he had potty trained years almost 2 years earlier but he was out of place in the classroom. His teacher stayed the same for three years and behaviors often got in the way of learning and socializing. Behavior analysis is not something regularly practiced in the classroom and because of that, he struggled.
Fortunately our home therapists use Direct Instruction curriculum (SRA DI) to work on his basic academic skills. During holidays and summer, he received almost full time academic and social skills training. Without the team of caring, careful, and loyal therapists, CK would not be where he is today.
My son continues in the same school with different teachers. He still has some issues and I see early adolescence in the near horizon. I sometimes look back and sense the old days of being on hyper alert for safety or depressed from comparing my son to his typical peers. I look at my son with awe. He works so hard to get where he is. He has school after school where we teach math facts, writing, and spelling. The school has taken on the Direct Instruction reading and math and that has been extremely helpful.