it is all worth it - this journey
March 30, 2010
I have been through a whirlwind the past few months. But now that I’ve come out the other end, I can definitely say “it was all worth it”. All of the work that I’ve put in to my children has finally felt like it’s paying off. It’s been 2 and a half years since my son’s diagnosis. Having known what “autism” was because of family members severely impacted, I thought my son would be diagnosed with ADHD. He did not have any of the signs of autism. So the Aspergers diagnosis was a surprise, punch in the gut. Another punch to the gut was having the University of Washington diagnose him and then say “they have no services for families, call FEATWA, and good luck to you”. Then further punch to the gut was being told by his private school that he couldn’t come back because he had been diagnosed with autism. Even further punches were the visits to the only other school choice being the public school’s autism program where, on our tour, observed a child with autism being dragged down the hall by his armpits simply because he was tired. One saving grace along the way was the private school asking him to stay and for us to help them establish a program for kids like him. But further punches were him not having success at the school, largely because their model just isn’t for learning differences and the teachers are untrained in this area, and it really wasn’t a “program” they were starting and they were getting political pressures for wanting to do so. The biggest punch of all, however, was the massive regression I saw my son go through in a classroom that wasn’t working for him. THIS WAS HARD. And, this made me finally put on the real fighting gloves and I punched back – knocking back that regressive behavior and not allowing autism to be a detriment to my son!
But it hasn’t been easy. I had to take time off from my professional career, which is not easy for me. I reached out to the professionals that I know , asked lots of questions, researched everything they suggested, and sought out answers. But I also got lucky. As luck would have it, I found a friend who is an autism education expert and 3 major resources became available to us this year, and I’ve talked about these in my blogs before. The UW Autism Center started providing services to families, the Seattle Children’s Autism Center was formed, and the Academy for Precision Learning recruited an acclaimed Principal to allow their school to become the premier school for inclusive education for individuals with autism. Boy did we get lucky and the stars aligned.
After two months in his second grade classroom (from the beginning of September to the beginning of November), he regressed to a point that I’d never seen him. By November, he was hooked up to new treatment providers – new behavioral consultant, new Aspergers psychologist, new psychiatrist – some of the best too. By January, he (and his sister) were moved to a new school – Academy for Precision Learning. By March, he had more assessments completed and was fully engaged in a social skills group for anxiety, cognitive behavioral therapy utilizing the work of Michelle Garcia Winner, and a sibling social skills group with his sister. All of this is ongoing and is a work in progress. But, my son is back!
And, we’ve discovered some wonderful things about my daughter along the way as well. I’ll blog about her one of these days! I’ll also share more about the autism centers and the new school over the coming weeks.
But I have to be sure to make this point. It isn’t that any of the providers or schools or teachers that we’ve worked with in the past were not good. It’s just that if you don’t have all of those things working together in unison and if you don’t have properly trained professionals, then the program is flawed. I know there is a tendency for people who have worked with my son in the past to feel that this blog is a punch in the gut. It isn’t meant to be. I blog because someone out there has a child like mine and can benefit from what I’ve learned. It’s very important for me to make sense out of my experiences and to try to help others either not make the same mistakes I’ve made or to benefit from knowledge I’ve gained. Everyone who has worked with my son has been caring and has given him all that they had to offer.
With all of the regression gone, we can move forward. Moving onward! It’s a journey!
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