Chances are, if you’re reading this, you are already looking for peers, and that’s a good thing. There is one immutable truth I’ve learned going through this roller coaster the past 15 some-odd years: no matter how great your psychiatrist, psychologist, therapists, social worker, case manager and school administrators are, they have no idea what you’re going through.
Nobody can really understand – truly internalize and digest – except another parent who’s going through it as well. It’s a secret none of those professionals, no matter how well-meaning they are, will ever tell you. And it’s not that they’re hiding something from you. They just don’t know.
Tim's psychosis seems to be rearing its head fast and furious this year. Just this week he's lashed out at classmates, broken a window, thrown items at and yelled at staff. He's told his case worker that the voices are back and are loud. We went up last Saturday to visit and he seemed good, but he also seemed to be holding on. We went to a movie and when I turned to him to make a comment or see if he thought something was funny, he was in a trance, unable to be stirred, seemingly staring through the screen, not at it.
My mood has deteriorated with each call. I am physically affected by each report. I curse myself for talking about how stable Tim is, and how well he is self-advocating, as if talking about his progress condemned those pluses to eventually failing. I get a shiver up my spine, thinking about Kelly Thomas and my conversation with a special needs attorney who informed me that, even with legal plenary guardianship when Tim turns 18, I can't legally force him to stay on his medication and treatment.
I swallow the real fear that Tim will end up living a life in and out of treatment, on and off the streets, in and out of danger, and swallowing it only keeps it down for so long. Today at my desk at work, it came out in the form of tears, trembling, and irritability.
I drove into the city yesterday, and at a red light I saw a man on a street corner, clearly homeless, seemingly mentally ill, having a conversation with thin air. It was a highly animated conversation, and, while I couldn't hear him, I could see the conversation both frightened and annoyed him. I sometimes feel the only difference between him and me is that his mind allows him to shout his anger at the wind, whereas mine makes me hold it all inside. I'm starting to feel, either way, the anger is killing us both, equally.
I cringe, wondering what tweeners who watched that think about psychiatric treatment. If they ever experience depression, will they tell anyone, or will they fear the dirty room full of strange adults and security guards? Will parents who saw it shy away at getting a child treatment, thinking the facility will be full of adults acting bizarrely? And what was the point of creating that backdrop? It didn’t further the story line. Stereotypes like these keep stigma alive and well, and keep 60% of teens that need mental health care from getting it. I followed Susan Resko of Child and Adolescent Bipolar Foundation’s lead and wrote a letter to Nickelodeon’s parent company, Viacom. It’s too late to change this episode of iCarly, but hopefully, they’ll give some thought to the images they promote in the future.
This post is part of Best of the Best Edition 9: Special Needs Therapy. If you click this link starting August 15th, you'll find similar articles by other authors.
Tim’s first diagnosis, at age four, was Pervasive Developmental Disorder, Not Otherwise Specified. That’s a long, fancy way of saying, “we have no idea what’s going on with your kid.” In the current DSM-IV-TR it’s a disorder on the Autism Spectrum, and Tim was diagnosed mainly because he had some odd behaviors, was very delayed socially, and didn’t speak more than one word at a time. The first therapy that was recommended to us for him was speech therapy, delivered by the school district as part of his IEP. I had no idea what speech therapy was supposed to do for a child who just wouldn’t speak.
Two of my three children received speech therapy as part of their IEPs, and I have to say, speech therapy did a lot more for them that, when it was first suggested, I thought it would. When I was a child the kids in speech therapy were there because they had a lisp or a stutter – an actual impairment of speech of some type. But today, speech therapy encompasses all communication skills, including volume and pitch modulation, role playing and practicing social skills, and improving expressive and receptive speech. Within six months of Tim starting speech therapy, he was talking in four and five word sentences, and I was amazed.
Speech therapy continues as an integral part of his treatment as he aged and his diagnosis progressed from PDD-NOS to Bipolar Disorder to Schizoaffective Disorder – his 13th year of speech therapy as part of his IEP. For the last several years his speech therapy has been done in classroom, meaning the goals he has and tactics he learns in speech therapy are integrated into his classwork. As I’ve watched in amazement Tim’s ability to self-advocate develop over the past year, I have to credit his speech therapy as an integral component to developing his ability to discuss his symptoms in complex and often abstract detail. If speech therapy isn’t a part of your child’s treatment plan, talk to your doctor and school. It should be.
If you follow me on Twitter (Chrisa_Hickey) or follow the Child and Adolescent Bipolar Foundation (bpkids) then you know about tonight's episode of iCarly entitled, "iLost My Mind". It's appalling that a kid's TV show thinks it's ok to poke fun at mental illness. Here's a preview of the episode:
I will be live blogging my reaction to the episode tonight at 8 PM Eastern / 7 Central / 5 Pacific. Join me here and join in on the conversation.
Read CABF Executive Director Susan Resko's blog post about tonight's episode.
*** UPDATE***
We're expecting storms here around air time. If I can't see the show because my Dish is down (as happens during a thunderstorm), I will blog during the West Coast rebroadcast.
I can't think of anything more shocking to a parent than hearing a doctor tell you that your child has a serious and chronic mental illness. I got my first taste of what a shock it is when my middle child, Timothy, was just eight years old. I was ill prepared for what exactly the diagnosis meant, and, I'm sorry to say, the doctor wasn't much better at helping me figure out what it would mean for Tim and the rest of our family.
Earlier this week, I read the news story about the murder of your son, Kelly, at the hands of the Fullerton Police. After reading the story, and viewing the video of the witnesses account of the incident, I was physically sick.
If I close my eyes I can see your son, Kelly, sitting on a bench at the Transportation Center, minding his own business, possibly acting a little strange, talking to himself, eyes darting in several directions, rocking in his seat. Who knows why the officers approached him - I've read that he may have resembled a suspect in a robbery, or maybe it's just that he appeared to be under the influence of alcohol or drugs. I can guess about the panic Kelly felt when he was approached by a stranger in a uniform, gun on his hip, and I can imagine the voices in his head telling him he was in danger and should run, as he did.
My ears ring as I picture the police running after Kelly, his mind betraying him, telling him to run faster and fight those that were trying to hurt him, however delusional that thought might have been at the time. I cry, imagining how frightened Kelly must have been when the warnings those voices gave him turned out to be the truth, and how, in an effort to grasp on to reality, he called out for you.
I know the desperation and guilt and anger and sorrow you must have, knowing that you tried to get Kelly the help he needed time and time again when he went off his medication, and how the law works against you, in a vain effort to protect the rights of the mentally ill, knowing full well in the end, the laws designed to protect them relegate them to lives of full-blown psychosis, wandering the streets, babbling incoherently, unable to get out of the mental prison they've created for themselves even if they wanted to in a moment of lucidity.
What happened to Kelly is my greatest fear for my child. As I stand on the precipice of his turning 18, convincing myself one day that I must retain complete legal guardianship of him for his own good, and the next, wondering if I am being too over-protective and should let him be. Today, my heart aches with sorrow for you and fear for myself and I want to clench my child to my breast, as it is better to suffocate him myself than turn him loose on a world that allows those that are supposed to protect us to beat the most vulnerable of us to death in public. I will never be able to get the sound of the witness on the bus, saying, "they killed him," out of my mind. I wish you justice for Kelly, and peace for yourself.
