What a week.
This week has been Mental Health Awareness Week, as I’m sure you know, and today is World Mental Health Day. This year’s theme is Living with Schizophrenia, something we know a lot about.
This week was also the week Kelli Stapleton was sentenced to ten to twenty-two years in prison for her attempt to end her and her daughter’s suffering. There are a lot of opinions about what Kelli did. A lot of them aren’t helpful, because this isn’t a cut and dry issue. This is a road flare on the side of the highway of the lives of parents of children like Issy; parents of children with severe autism or severe mental illness that comes with very real and very dangerous behavioral problems. If you’ve ever read Kelli’s blog, you know how difficult Issy’s behavioral issues are. All you need to do is read the last post Kelli wrote before the fateful day she lost all hope. And why did she lose hope? Because a team of professionals decided to back a teacher that was upset that the INDIVIDUAL education plan that was crafted by experts that had just had Issy in residential treatment might need to be tweaked to fit what SHE – a teacher who had never taught Issy before – thought was better. They told Kelli that Issy was not welcome to attend the public school in her home district — at the school where Issy’s dad was the Principal, mind you — and they suggested Kelli consider homeschooling. Forget how they felt about Kelli; this is a direct violation of federal IDEA law.
I hope that teacher and the administration that backed her feels they have blood on their hands.
It is so tiring, living this life, and there is no line of sight to resolution or reprieve. Every day that I dare to think that we have crossed some threshold into normalcy and stability is met with the sharp slap of reality across the face that Tim’s illness is fluid and unpredictable.
I remember when Liza Long wrote, “I Am Adam Lanza’s Mother.” I had really mixed feelings about it, particularly when she said her son terrifies her, even though I knew what Liza meant. Two of Tim’s three suicide attempts happened because Tim felt he was too evil to live; that his illness had turned him into a violent, dangerous monster. We’ve spent a lot of time trying to undo that notion. Tim is not evil; schizophrenia is. It’s not Tim that terrifies me; schizophrenia does. I feel secure in saying it always will.
There’s no easy answer to all of this. There is plenty of blame to go around. This week I also wrote a scathing, bitchy email to Tim’s caseworker and copied everyone whose email address I could find in departments from the County Department of Health to the State Secretary of Health because I’m tired of being the only person who is concerned about what happens to Tim when he turns twenty one and ages out of the child services system. Not that we’ve gotten much help IN the child services system since he left residential treatment 16 months ago. We are back to never being able to leave Tim alone; one of us must be with him twenty-four hours a day. We are back to inpatient hospitalization every few months. We are back to broken doors in the hallway and not poking the bear. Is Tim more self-aware than before residential? Yes, most definitely. But I wouldn’t say he’s necessarily more stable. He’s definitely bigger and more dangerous when he’s not.
This week is ending with repeated calls to Tim’s psychiatrist. Tim called me on the way home from school on Wednesday to tell me his thoughts are, “running through my head, and they’re bad; I can’t turn them off.” He wants to increase his Clozaril. He almost didn’t get into his car, but he knows his school closes at 2:30 and if he doesn’t get in his car, they will call the police — YEAH — even though they know full well that the only reason he doesn’t get into his car to come home is because he’s symptomatic and is struggling to cope. But heaven forbid the clinical staff at a therapeutic day school help him try and cope until a parent can drive the 30 miles to get there. It’s no wonder twenty percent of the adults in jail and thirty percent of those living on the street have schizophrenia. Even those trained to service this population treat them like criminals.
So I will continue on this hamster wheel of badgering and berating Tim’s caseworker. Tom will spend hours trying to get his psychiatrist on the phone. We will trade off babysitting our twenty-year-old man-child and repeatedly replace broken doors. I will stay on antidepressants and in therapy; Tom will live with his chronic insomnia and nightly scotch. The weeks will blend into months and eventually into years. I will write congressmen and talk on the radio to try and change our trajectory, and I will pray I never feel so desperate and alone that I end up living a week like the one Kelli Stapleton will be living for the next ten to twenty-two years.