This is the Beginning not the End.
Today my child will graduate from this amazing place, The Wright School. The Wright School was established in 1963 and is a public school run by the Department of Health and Human Services here in North Carolina. It is a partial residential school with children staying Monday through noon on Friday and then going home on weekends. The school typically takes kids for about 6 months. It’s been a long journey, but it brought us hope.
It was late February of 2020, and our family therapist called while I was in a meeting for the Every Child Coalition. I scuttled out of the meeting trying not to be conspicuous and as usual managed to make too much noise. I got myself outside of the building to the crisp air and to one of the most profoundly scary conversations I’ve ever had to have with a therapist. My son was in trouble again and it looked like things were moving even further downhill. There on the steps of a converted Chevrolet dealership I broke down and began what would end up being a journey of hope. At that very moment however, on a cold February day, I listened to a plan from the therapist almost numb as cars zipped along the busy boulevard in front of me.
None of the options on the table were good options. As I hung up the phone I tried my best to slink back into the meeting that was breaking up. I would have just gone home, but I had left things in the building. I hoped no one noticed. How do you explain to friends who have typical kids that your world is falling apart?
My child was being reduced to a set of behaviors. I don’t even think the school he attended saw him as human anymore. For the first time in a long time, I questioned public school, my decision to not allow ABA therapy, most of all I questioned my parenting skills. Where had I failed that we were now facing going on home hospital? Home hospital is a private tutoring program through the school system with very limited hours.
That was just a short term solution to a very big issue. How to get my kid to be safe and learn at school. My therapist had an idea. We could apply for the Wright School. It was a public school. It was a residential school, well at least Monday through Friday. It felt radical. The whole situation our family faced felt radical.
At a very long, very stressful IEP meeting, my child was officially put on home hospital. My child got to the point he wouldn’t get out of the car to go to school. Everything was a struggle, a fight, a flight. We needed to heal. Home hospital wasn’t the best option, but it was the only option we had at the time.
We also decided to take a chance on Wright School. Like all things in the disability world, there is an application process and of course a waitlist. First the application. I had help navigating that process. About a year earlier, lost in the bureaucratic process and on the advice of others, I hired what’s known as a parent advocate to help with the IEP process. This expert also was a wiz at applications and we sat down one day at the closest McDonalds to complete the process. Since I didn’t have childcare, I suggested one of my kid’s favorite places. Not being at school full time, my kid and I were going to spend a lot of time together.
So after a bad cup of coffee and a lot of paperwork to start the referral process, we completed the parent portion. I even made a phone call to the school from outside the McDonald’s to ask a question about the process and confirm we were applying. As is with most things, all we could do was wait. Even if our application would go through, the lowest estimate for the wait list was 6 months and the school was quoting a year.
In the meantime, we started on the home hospital program which was a tutoring program and for us was about an hour a week. Our tutor was a special education teacher at Root Elementary. My son went in after the elementary school dismissed for the day at 4pm. The plan was to get my kid learning again and then enroll him in that same school with the same teacher. What we didn’t anticipate was a global pandemic.
On the day that we were being informed that all schools in North Carolina would be temporarily shutting down, I got the call from the Wright School that our referral had been approved and we were officially on the waitlist. It would be a very long wait.