CABFJudith Warnerparentingschizophrenia

An Open Letter to Judith Warner

Chrisa Hickey8 comments1388 views

Good Morning:

I’m reading your book right now, “We’ve Got Issues“. It was recommended to me by my friends Susan Resko and Nanci Schiman who run the Child and Adolescent Bipolar Foundation (I’m one of the volunteers who helps moderate their twitter account and writes a weekly post for the bpkids.org blog). I’m only about 100 page into the book, but so far, pleased with what you’ve written. You seem to understand that we’re not just parents who can’t deal with our kids – our kids have real issues. My husband Tom and I have three kids ourselves – our oldest biological child is neuro-typical (he’s 19). Tim, our middle son, is adopted at birth and has Schizoaffective Disorder (he’s 16). Our youngest was adopted from foster care and she has a Reactive Attachment Disorder (she’s 15).
We have traveled a long road to get to where we are today. We knew something wasn’t exactly “normal” about Tim when he was about a year old. Tom quit his job and became a stay-at-home dad because Tim couldn’t cope in daycare. He was completely oblivious to the other kids and, when forced to interact in the same area with them, he’d shriek and try and leave. He didn’t talk more than one word at a time until he was 4. Pediatrician after pediatrician told us he was just blessed with a big brother who doted on him and spoke for him. It seemed logical – our oldest did seem to know exactly what Tim needed, day and night, and would express it for him. When Tim started preschool we asked the teacher to let us know if she felt Tim had “issues”. She called us on day two and said, “he needs to be tested.”
And tested he was – neuropsychological testing, chromosomal testing for Fragile X, non-verbal IQ testing. A Neuropsychologist told us that he was diagnosing Tim with PDD-NOS, but added, “I’d say he was autistic but he has great eye contact and a sense of humor.” We started down the path of raising a child with what we were told was an autism spectrum disorder. PDD-NOS hadn’t been around that long as a viable diagnosis in 1998 (maybe a decade), so we found that most doctors – and all teachers – had no clue what it meant. I started spending weekends at the library, searching the internet for what it meant and what we should do. I was confused because PDD-NOS didn’t explain why Tim had a obsessive fascination with Superman (I mean, seriously obsessive), why he had a strange fear of tags in his shirts (not pants or any other clothing – just shirts), why he would rage so intensely for no apparent reason, or why he hated his peers so much. We tried the no sugar diet, the gluten-free diet, the no preservatives, no dyes, no additives diet. We tried cognitive behavioral therapy, family therapy, group therapy, play therapy. He was diagnosed, over the years, with a mixed expressive-receptive language disorder, a sensory integration disorder, and a mood disorder NOS (by the way, NOS are my three least favorite letters in the english language). His rages got more intense, he started running away from home (first down the street, then miles away), he paced, mumbling to himself (this is a 4th grader, mind you), he refused to shower, fearing the water was dangerous.
When his therapist suggested meds, we said, absolutely not. No way were we going to be one of those parents who medicated their child because he was “high spirited”. When, at age 10, he didn’t sleep for days at a time, spent time banging his head on the wall, and threatened to kill himself, she suggested hospitalization. I cried for days. I was a failure. He was hospitalized for 25 days, at age 11. The psychiatrist on the ward told us our child heard voices, had delusions. We told him HE was the insane one. We took Tim home – literally ripped him out of the hospital – with just one med (risperdal) and a refusal to let them re-diagnose him.
Over the next 4 years, Tim had 11 additional inpatient hospital stays totaling nearly 300 days, tried 27 different med combinations, and was diagnosed Bipolar NOS, Bipolar 1, Bipolar 1 with psychotic features, and, finally Schizoaffective Disorder, bipolar type. Every med change, we resisted. Every hospitalization, we tried to avoid. We lived in a house where our two other kids and our rooms had key locks to keep us safe from Tim when he was in psychotic rage at night. We had the sheriff’s department on speed dial. We avoided neighbors and lost friends. I mean, how do you explain to the neighbors when your 14 year old is running down the street, screaming about some invisible being out to get him, barefoot, 10 at night, no shirt, in the snow?
After his 12th hospitalization, Tim’s psychiatrist (whom we adore, mind you), suggested, that our last hopes were residential treatment, Clozaril, and, possibly ECT. ECT requires a court order for a minor in Illinois, and we don’t have the stomach to get in front of a judge and explain how we feel our child needs to have electricity run through his brain. Talk about feeling like a failure. Clozaril scare the living daylights out of me, but that’s what we picked, and he’s been on it for a year now with not adverse side effects. He’s also been in residential treatment for a year, with, his team feels, at least another year to go.
I have finally gotten to the point where I can say to people, to explain where we’ve been the past 8 years, “My son has schizophrenia.” (I don’t even try to explain schizoaffective disorder). Yes, children can have psychotic illnesses. Yes, I give my child psychotropic medication. Yes, the rest of the family is in therapy, I’m on anxiety meds, and my daughter exhibits PTSD from living with this for so long. It doesn’t make me a bad parent. It doesn’t make my child a bad kid. He’s an amazing, loving, creative, happy soul when he’s stable.
Where was I going when I started this rambling letter? Oh yes – I wish you’d had time to talk more about childhood onset psychosis. Do you know how many doctors have said to me, “You don’t want your child diagnosed with a psychotic disorder – that’s a terrible label,” when it’s exactly what was wrong with him? Bipolar Disorder is coming out of the closet, so to speak, but schizophrenia and other psychotic disorders are still scary and creepy, fit only for plot lines on Law & Order. But I appreciate your book (so far so good!), and I appreciate you sharing the revelations you had along your journey to write it.
Warm Regards,
Chrisa Hickey

8 Comments

  1. Most excellent letter Chrisa. I appreciate all you do to promote awareness and education. As you know, I don't have children, but I do know many people who do, some of which are not neuro-typical. I always keep you and your knowledge in the back of my mind, in case some gems can be passed along. Additionally, I will provide your blog, and the URL to CABF, to those in my psychology classes. (It's amazing how many students have children with psych issues.) Anyway, I just wanted to publicly thank you… You are a fantastic mom; it takes strength to admit the need for help. In no way should you ever consider yourself a failure because of the specialness of your family!

  2. I feel so honored that you've written me this open letter to share your story. The best part of writing We've Got Issues has been the parents whom I've met, either in person, on the phone, or online, like this. You are right that there's an underrepresentation in the book of parents of kids with psychotic disorders. This reflects, probably, the relative rarity of these disorders compared to, say, ADHD or depression. Perhaps I'll have the opportunity in the future to update the book, at which point it would be wonderful to be able to add voices like yours. I hear so much commonality in your story with others people have told me about living with children with very serious mental illness: the trauma that it is for the rest of the family, the desperate search for good help, the false turns, the extreme reluctance to use medication. I hope that you will continue to like the book as you read on and will find in it a community of people who give voice to some of what you've lived through.
    Thank you so much for reading We've Got Issues — and for writing.

  3. Hello Chris,

    You have shown amazing strength in the face of adversity. I wish you peace and love as you continue to find ways to live a full life in spite of these challenges. A book that has helped me is called The Meaning of Life by Victor Frankel. He was a concentration camp survivor.

  4. Ky – it's support from long-time friends like you that do help me get through the times I feel sorry for myself. And that is more valuable than you can imagine.

    Anna – thanks for your note. I will look up that book!

  5. Hi Judith: Thank you for visiting my little blog. I finished your book today and I would be most honored to share our story if you do update the book.

    What you say is so true – childhood psychosis is much rarer (1 in 50,000 children is the latest statistic I've heard), and, as such, so much more stigmatized. Imagine a doctor telling you that they would diagnose your child schizophrenic, but won't because, "you don't want a label like that on him." Um, as my oldest would say, WTF?

    I completely agree with one of your final conclusions – a psychiatrist who treats us as a partner in treating Tim made all the difference. In my CABF support groups, I hear parents lamenting not being able to find a doctor they can work with less than 300 miles from their home.

    I am an active volunteer for CABF because CABF is the only organization I've found that actively helps parents like me make sense of the, well, the insanity of trying to get help for a mentally ill child. Tim's not bipolar, but we are still welcome, and we still fit. And in many ways, we wouldn't be where we are today without the support and love I got from CABF staff, volunteers and members.

    Again, Judith, thanks for writing – and I hope you'll keep reading about our journey through as we try to get Tim to as productive and happy an adulthood as possible.

  6. Chrisa, this is a wonderful post, and what an honor to have Ms. Warner herself come to comment!

    I felt exactly the way you did about the book. I loved it. Really, really loved it. The first truly balanced look at the issue of psychotropic medications for children that I've ever read.

    That said, severe mental illness got short shrift, and that's always frustrating. So often, people don't know that a child can even BE psychotic (which is weird; children can have as many things go wrong with them as adults can). I have people give me the fish eye all the time and say things like, "But you can't really tell with a child, can you? It could just be a very active imagination." Sigh.

    And the labeling thing? Yes, WTF? "Your child has leukemia, but that's a terrible label, so we'll just write down here in the chart that he has a bad case of the flu." Ludicrous.

  7. Adrienne – you know, when the first pdoc told us Tim heard voices, I said to him, "if you ask him every day if he hears voices, eventually he'll say yes just to shut you up." I was definitely down that river in Egypt (tee hee).

    And – on both how cool it is Judith Warner left a comment, and the labeling thing – I know, right?

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