When Boo was first diagnosed with autism, 8 years ago this month, we were living in Pennsylvania. Even before the diagnosis (which we knew, long before it was official) he was in early intervention services, which led to a specialized day care/preschool placement and an IEP, and floortime services for three years, and diapers being covered by Medicare, and wraparound services.
And then we moved. Not all that far – just across the state line. To Delaware.
But in terms of autism services for Boo, we might as well have moved to the moon.
Our biggest fear was that he would lose everything, all of his services. (Which is, of course, what happened.)
Perhaps we were naive in thinking that we would be able to pack everything up in a box, label it with a Sharpie, take it all with us. Put OT in this box. Floortime goes in this room, over here.
So we met with the folks at the new school district. Asked questions. Were reassured that everything pointed to Boo continuing to receive services. Same as it ever was. We were relieved.
It didn’t last. After the new school district did their evaluation, they called us into a meeting and determined that Boo was no longer autistic enough to qualify for special education services. Their exact words:
“A child needs to be 25% delayed in Pennsylvania. Here in Delaware, they need to be 45% delayed and Boo doesn’t meet the criteria.” They might as well have quoted the infamous Soup Nazi from Seinfeld and yelled, “No services for Boo!”
Which is what happened. We were stunned. As we often said in the four years we lived in the First State, it’s not like we crossed the state line and Boo became less autistic. But in the eyes of the powers that be, that’s exactly what happened.
We could have fought back. (But how? We didn’t know how.) We should have. I think there’s a part of me that will always regret not doing so. But my friend Jini once told me (and I have never, ever forgotten this) that we make decisions based on the information and what we have available to us at the time. We weren’t (still aren’t) anywhere near rich. We couldn’t afford a lawyer. I was commuting four hours a day to work. The Husband’s job was becoming a living hell.
But somehow, in the midst of this, Boo was doing OK, and we were able to pay privately for some therapies, and some of it was even reimbursed by insurance, so it was all right. That’s what we told ourselves anyway.
But we knew that it wasn’t. We knew that he was being cheated out of something he deserved, that he deserved more, that he deserved better. There were also other issues going on at the time. Emotionally, we were exhausted, wrecked. Our time in Delaware was very, very hard on a lot of levels, much more difficult than many people ever knew and that we let on. It’s only now that we’re out of that situation, that we have some time and distance, that we’re even able to admit to ourselves how tough it was.
And then, we knew we had little choice but to leave while we still had options, and when we looked, one of those options was coming back to Pennsylvania. All of a sudden, as if a cloud had lifted for all of us, things looked brighter. Things felt brighter. Even though we would be on the opposite end of the state as our hometown of Philadelphia, it felt like we were coming home.
Our goal was to get services reinstated in school for Boo, to do right by our son. I spent some time on the phone during The Summer of My Unemployment talking to special education directors and doing what research I could and trying to figure out what was still what from when we originally lived here. And when I told the new team here about the “need to be 45% delayed in Delaware and that Boo didn’t meet the criteria,” I was gratified to see that, to a person, they were appalled, that they used words like “ridiculous” and “absurd”.
So the process started all over again. Back to the proverbial Square One. The gawdfreakinawful questionnaires about meds taken in pregnancies and family histories and developmental milestones and did I give permission to evaluate (hell to the yeah) and the plummeting grades and the mid-point progress report that superceded the parent-teacher conference and the “is it OK if we try him in the Lunch Bunch autism group?” to finally, finally, the letter that arrived this afternoon:
“The student has a disability AND is in need of specially designed instruction, and therefore IS ELIGIBLE for special education. Boo meets special education eligibility criteria as a student with Autism (Asperger Syndrome). It is recommended that he begin to receive specially designed instruction on an itinerant basis through the Autistic Support program.”
Yeah, there’s a part of me that wishes there was a magic wand that had been waved, where someone could have said that my boy was no longer autistic. Maybe that’s part of the reason that kept us hanging on for longer than we knew. Maybe we wanted to believe what we knew wasn’t true.
But that’s not going to happen anyway, and this is better than that.
This is vindication.
After four years.
Take that, Delaware and your 45% delayed bullshit.
It’s sure nice to be back home.
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