Learning on the Journey

My 12 year old son was diagnosed this summer, with Schizotypal Personality Disorder. While the prognosis for this is not what I had hoped, learning about it has helped me to understand and accept my son’s struggles. It has also empowered me to advocate for him in the school. This disorder, simply put, is about halfway on the Schizophrenia spectrum of disorders. In my son, it manifests as severe paranoia with anxiety, seeing things out of the corners of his eyes, and sometimes hearing things that aren’t there. These symptoms have been noticeable and troublesome for about 5 years…we just didn’t know what it was. He had been “diagnosed” with things like adjustment disorder, PTSD, mood disorder, and people who worked with him had suspected an Autism Spectrum Disorder. On top of this, he is intellectually gifted…the one thing we knew from psychoeducational testing.

The stumbling block for Brother, is getting into the school building in the morning. We may get all the way to the drop off spot, and he just can’t get out of the car. He has said that something in his brain says,”scary”, and he panics and freezes. This doesn’t happen everyday, but it does occur about 50% of the time or more. We have tried many different approaches to this, and none have rendered consistent success. At a meeting this week, his team came up with another idea to try.

When working with the school team, it became obvious that one of the members of the team had very little experience or knowledge about mental illness. His solution was to strip the child of everything, and make him “earn” it back by basically, acting like he doesn’t live with a mental illness! I put that idea to rest quickly, by stating that while that approach may work for some, in this case, it would require that I be communicated with DAILY by EVERY TEACHER, or it wouldn’t work. Last year, the behavior plan called for weekly communication about Brother’s behaviors, and teachers couldn’t manage that!

Of course, a meeting like this couldn’t end without the school administrators stating that they just don’t have the resources to accommodate Brother’s needs. (Note- the main need they couldn’t accommodate was for consistent adults to help deal with the panic attacks). Of course, I informed them that the nearest school that can accommodate Brother is in another city, and the school system would have to pay for it, because I can’t afford it! The monthly tuition is about the same as my take home pay!

The other comment that left me disturbed, was that the school is not responsible for providing an education unless he is inside the building. This left the question of who gets the child into the school on days of panic. I can get him to the school, but the panic sets in while he is in the car. To me, “school” starts right there. If he was on a school bus, they wouldn’t be able to just leave him there. I can physically drag him into the building, but it would definitely look abusive- so is the school telling me to abuse my child in this way since they don’t have people to help with this? That seems disturbing as well.

We have a very long way to go. Right now, I would dare to guess that most families who have a child with this level of mental illness are either homeschooling or paying for institutions. I have seen students with obvious mental illness in schools during my 20 plus year tenure as a special education teacher. I have seen parents give up on public schools. I don’t fault them at all for making such a decision. Change will not come if our schools are not put in positions to have to serve our population of students with mental illnesses, and held accountable.

~AoA