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.