The Difference a Year Makes

woman carrying baby at beach during sunset

 

Seeking treatment for a child with autism and co-morbid diagnoses has its challenges. Until this year, our insurance refused to pay for ABA therapy, the gold standard for autism treatment, forcing us to skimp on ABA and use CBT. CBT is a good therapy, but it assumes that the person has the functioning ability to change their behavior.
This time last year, despite years of CBT and other care by doctors and therapists, my son’s behaviors were escalating. He’d thrown objects, made threats (which I don’t really think he would have followed through on; I was more concerned he’d accidentally hurt himself), and survived only eight weeks in his first year at a typical high school, despite “support” from an ASD class.
Mind you, none of these things were his fault. Children with ASD are sensitive to changes in routine and often have extremely low frustration tolerance. Until they learn control, they can’t effectively deal with triggers that neurotypical children simply brush off (typically, sensory input of some kind). Our school district and the doctors who cared for him didn’t have the resources to help him.
I knew, however, that he couldn’t be allowed to continue with his behavior. Outpatient therapy had been ineffective, and in patient therapy wasn’t appropriate. Last year I lived in an RV for three months, separate from his father, so my son could have treatment away from home. We couldn’t continue that way.
So we moved. Packed our bags and left our family behind for the great white north.
I spent three months, nearly full time, researching the laws and available programs and hospitals and doctors and therapists of various states. Some places are damn great at dealing with neurodiversity, especially autism, and some are piss-poor. I made a list of the top ten and then the research really started. We had to pick one we could afford, where we thought we could find jobs and our insurance might cover some of the doctors, and where there might be other support.
New Jersey came in first. Unfortunately, there didn’t seem to be work to be easily found for us, and while we had family there, the cost of living was so much higher than where we’d lived that our [meager] savings would be effectively diminished by half. Pennsylvania and Maryland were good choices for school and programs, but our medical insurance wouldn’t cover the doctors and facilities we would have chosen.
In the end, we chose Columbus, Ohio. Ohio has some laws and programs favorable to people with autism, including scholarships that can be used for education and other programming. Columbus has been on the U.S. News and World Report Top Places to Live for several years. And while Cleveland has the Cleveland Clinic, Columbus has Nationwide Children’s Hospital, with its Center for Autism Spectrum Disorders and severe behavior clinic. Olentangy school district, just north of Columbus, is one of the very best school districts in the state. And my husband’s family is in Ohio, not nearby but close enough for us not to feel entirely alone.
Once we’d settled on Columbus, things slowly fell into place. I flew up and found a rental home in a weekend, and within three weeks, my son and I had moved up. My husband stayed behind for another three months to prepare and sell our house, but eventually he followed. I had to close my law practice, which hurt our income, and my husband took a job driving a truck to make ends meet (often traveling for days to a week away from home at a time) until he could find work closer to home. We paid for most things out of our pockets. But eventually my husband found a good job and I took on additional work and insurance kicked in.
The year that has followed was nothing short of a miracle. We found a doctor who immediately changed my son’s medication to help control his behaviors, with incredible results. He attended an autism summer camp – something that didn’t exist in our previous home town – and we enrolled in parent training and social skills groups. Our medical providers attend IEP meetings and communicate among each other to help develop behavior plans that are more effective than anything we’d been able to develop before.
After an in depth evaluation, the school district assigned my son to a small, supportive school, which he attended for the entire year, achieving 75% of his IEP goals from December to May. We now live ten minutes from the Columbus Zoo and five minutes from a beautiful MetroPark with hiking and swimming, and less than a half hour from most other activities.
For the first time in a long time, we have hope. If you’re an autism parent like me, you know what that means.

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