When I was in high school (1985), my friend Mark and I went to see R.E.M. at the old Raleigh convention (civic?) center in downtown Raleigh. Neither of us was familiar with Raleigh at that time. We ended up lost. And despite what the stereotypes might say, we stopped for directions at a gas station. The guy there told us, and I kid you not, “You can’t get there from here.” That in itself is funny, but the beauty of it is that “Can’t Get There From Here” is an R.E.M. song. While we did end up making it to the show, the guy at the gas station was somewhat right. We ended up having to drive over a small median in the road to ultimately arrive at our destination.
So what does that little anecdote have to do with mental illness and more specifically Ethan’s journey. The journey to a place that can serve Ethan’s needs and allow him to overcome the issues that prevent him from living at home and attending school in a traditional setting has many twists and turns, but so far it doesn’t know where it’s going and that’s frustrating.
This is one of the things that has me pulling out my hair. No one knows anything. No one sees the whole picture. I can stick with the puzzle metaphor. Each place we have been is a piece, but we don’t have the box cover and some pieces seem to be missing and some are in different boxes.
This is the circuitous route we’ve taken in schooling:
Wake Forest Elementary (Public) —> Forest Pines Drive Elementary(Public) —> The Bridges Program (Alternative Public)—>Root Elementary (Public) —> Whetstone Academy (Therapeutic Boarding School) —>Wright School (Public Therapeutic Boarding School)—>Alexander Youth Network (PRTF) —>Wakefield Middle School (Public)—>Alexander Youth (PRTF)—> ?
These are some of our puzzle pieces:
Intensive Home Therapist, Parent Navigator, Education Consultant, Lawyer
These are puzzle pieces that apparently fit other puzzles because they have been no help in our journey:
NAMI, TEACCH, Autism Society of North Carolina
Here are some edge pieces:
Holly Hill Hospital, UNC Children’s Psychiatric Hospital, Wakebrook Mental Health, Strategic Behavior Center, UNC Hospital, Strategic Behavior Center
The next school Ethan attends will, barring unforeseen circumstances, be another Therapeutic Boarding School. Ethan’s previous placement at a TBS was successful but ultimately depleted our funds. According to Ethan’s doctors, his next stay must be at least two years for progress to be made. How do you find a PRTF or TBS? Don’t count on your local MCO (Managed Care Organization) to help. When we contacted them for help, we were told to look at their website which contains this beast. And there is no one at Cardinal, our MCO, to help. We had to go through each of these on our own. Of that list there is only one that has a specific Autism element that accepts boys Ethan’s age. They turned him down. They suggested the Wright School where he had previously attended. The Wright School is a therapeutic boarding school and not a psychiatric residential treatment facility but it is not designed to work with Autistic children. Why did we end up at a PRTF in NC that doesn’t have an Autistic program? It’s because they accepted us. As long as someone in NC will, we cannot look out of state.
How do you find the right therapeutic boarding school? Well you can go to your trusty friend Google. Try this one or maybe this. Look around enough, as we have and continue to do, you will find no one to help you navigate. There is no help line for this. We are stumbling around and hoping for the best. We’ve brought in experts of some of these pieces. If we find one, how can we be sure about the school? Maybe you have to do a little or a lot of ground work. This is where an educational consultant comes into play. We learned about these consultants after we enrolled Ethan at Whetstone. They don’t come cheap (except for those of us who face such an uphill climb that she feels sorry that we will need so much money just to afford the school). Our educational consultant will contact another and they’ll tell two friends and they’ll tell two friends and…
To date one school will accept him. That is a program in Austin, TX. It’s over $11,000 per month. That’s where the fundraiser begins. That’s when we start looking for scholarships. How do you find them? Maybe one of your experts knows of one. Maybe the school you are looking to attend knows of some. Would it surprise you to know that we have not had that kind of luck? Perhaps it is like psychiatrists and insurance. Many psychiatrists (in fact most in my area) do not accept insurance. Mental illness only affects the wealthy, you see. Why would they need scholarships?
While Ethan attended Whetstone we learned that some students had been funded by their school districts because they could not offer an appropriate education. This is where our parent navigator, psychologist, psychiatrist, and lawyer have to come in to play. We are still working on this. No public school unfortunately is currently prepared to educate Ethan. They will of course fight this. Wakefield Middle School felt that 1 hour of tutoring a day in a room he never left constituted an appropriate education. There is no guarantee that we will receive any help from the public school system.
We have been referred to NAMI. They offered no help. We had Ethan tested by TEACHH. They confirmed Ethan’s diagnosis but little else. Doctors have referred us to other doctors who have referred us to other doctors. It’s been a doctor spiral, round and round and going nowhere. Schools sent us to alternative schools who send us back to regular schools that suspended him and resulted in a placement at a therapeutic boarding school that ultimately drained our bank account an we landed at the Wright School. Ethan was ultimately unsuccessful at the Wright School and …
“So it goes.”