How do you explain when it began? I didn’t know at the time what was going on. But hindsight, as the saying goes, is 20/20. I often wonder if we’d not taken things our pediatrician said as gospel, not questioned a specialist who made a judgment call, pressed more for information, if we wouldn’t be in a different place than we are today. Much of our story is my and my husband’s hindsight, looking back on events and milestones with much more clarity than we possessed when it originally occurred. Our family story is still evolving.
Tom and I were both 26 years old when we were told the only way we’d have a second child was through an egg donor or adoption. Alex, our oldest was three and we’d been trying for a second child for just over a year. Hearing that news was hard but we had already decided that, if it came to that, we would adopt. It didn’t take long – we told everyone we knew and within a few months, an acquaintance of a friend of my parents was looking for adoptive parents for her daughter’s soon-to-be-born child. The birth mother wasn’t a teen, but she wascognitively disabled and had proven unable to raise a child in the past. In order to avoid this new child from going into “the system,” the grandparents wanted adoptive parents picked out before he was born. Other potential adoptive parents had wanted extensive family histories and genetic testing since the birth mother had a disability. We didn’t. We simply wanted a child.
Three months was all it took. We brought Tim home from the hospital, just one day old, perfect in every way. Alex was excited. Our parents were thrilled. We couldn’t believe we were so blessed. Tim seemed to develop in the usual way, meeting milestones for rolling, sitting, height and weight. He loved rhythmic things – baby bouncer, bouncy seat – and he absolutely pitched a fit if he wasn’t in his exersaucer or bouncer, all day, every day, self-stimulating (stimming), perhaps, even then. By his first birthday, he hadn’t said a word. The pediatrician told us it was “second child syndrome,” that Tim’s every need was being answered by his big brother. Tim would grunt, and Alex would say, “he wants juice.” We took that as reasonable.
It was less reasonable when, by four, he was only able to string one or two words together to express himself. He would rage, violently out of control nearly every day – rage we chalked up to frustration at not being able to communicate his needs. He fled the house so often that we had to put a deadbolt on all the doors, keyed on both sides. He refused to play with other children, preferring to play alone, seemingly lost in his own thoughts, babbling with his stuffed companions. His first day of preschool we asked the teacher to let us know if she thought Tim might have any “issues.” She called before the school day was over.
We began the testing. A Neuropsychologist diagnosed himPDD-NOS, saying, “I’d say he’s autistic except he has excellent eye contact and a good sense of humor,” completely ignoring the fact that those two things rule out all Autism Spectrum Disorders. Fragile X testing was negative. The school offered speech therapy and chalked up the continuing rages and fleeing behavior to Autism. Continued testing by the Neuro and the school district added diagnoses of Expressive-Receptive Language Disorder, Sensory Integration Disorder, and Developmental Delay. When Tim was five, we adopted our daughter, Di, who was four. Tim wouldn’t interact with any children except her, and we thought it was good for his social and speech development that they bonded so well.
Speech therapy gave way to a full-time special education class, which gave way to the first of five therapeutic day schools, first for Autism, but after we engaged a child psychologist and, at her recommendation, a child psychiatrist, schools for children with emotional disturbances. But it wasn’t until age 11 after weeks of uncontrollable rage, when his psychologist sat me down and gently explained that my child was psychotic and needed to be hospitalized, did I realize what she’d been trying to soft-shoe to me for nearly a year. Tim did not have an Autism Spectrum Disorder. He had a mental illness and needed hospitalization and, very likely, medication. As I sat, stunned, she gently told me, “he will likely be hospitalized several times.” I brushed that notion off at the time. But between that first hospitalization March 2006 and June 2009 there would be 11 more, accompanied by 27 different med combinations, daily therapy, and refinement of his diagnosis from Bipolar NOS, to Bipolar 1 with psychotic features to Schizoaffective Disorder, Bipolar subtype. Tim was actively psychotic – hearing voices, plagued by delusions – and alternately manic and depressed for much of that time, if not all of his life. It was just much more noticeable since his speech had gotten to the point where he could explain what was going on in his head.
In June 2009 Tim was granted an Individual Care Grant from the state of Illinois, a unique state program that provides funds for intense community based or residential services for severely mentally ill children. It was a month before his 15th birthday and, after years of talk of suicide (and one attempt) alternating with violent, destructive rage, we sat him down and explained the options. He chose residential to, in his words, learn to be independent from us. Either Tom or I had been with him (except for the 5 hours a day he was in school, when he went to school) every hour of every day since he was four. We were all exhausted. Alex had spent as much time out of the house as possible, and Di mostly hid in her room, understandably diagnosed with PTSD in 2009.
Tim went to residential treatment in August 2009, and he resides there today. Through intense treatment, a very predictable and rigid schedule, and Clozaril (we had several psychiatrists, including the head of pediatric psychiatry for a large hospital in the Chicago area tell us we were down to that or ECT), Tim is pretty stable today. His voices are never gone, but he has learned how to block them out (the meds help). He does cycle, as regular as a calendar, experiencing psychosis and depression in mid to late winter, and psychosis and mania mid fall, yearly for the past three years running. He is still plagued by anxiety that feeds his psychosis, but his personality is starting to show again. He is extremely creative, and paints almost daily. He loves action movies, R&B, and sight gags. He knows how to make pasta from scratch. He’s trained our dogs to shake and catch balls in the air. Tim comes home often for weekend visits and we are able to spend time as a family again, boating, going to movies, and sitting down to dinner, and he’s progressed to the point where we tentatively think he’ll be home for good by this time next year. It’s been a long journey, and now we are in the beginning stages of planning how to live our lives once Tim has aged out of the ICGprogram. Tim will most likely never be independent, and we understand and are preparing for that. But he can and will have a life he can enjoy and be proud of, thanks to the difficult choices we’ve made today.
Hindsight being 20/20, I have looked back and thought, if only our pediatrician hadn’t told us Tim’s not talking was normal. If only the Neuropsychologist hadn’t looked at that one symptom. If only we’d questioned more and accepted less. Maybe we could have gotten Tim stable so much sooner. Maybe he wouldn’t have spent 300 days inpatient in three years. Maybe we wouldn’t have had to send him away to get him the treatment he deserves. But that’s a fool’s folly. Now I spend my spare time telling our story, volunteering for the Child and Adolescent Bipolar Foundation, and helping other parents get through IEP meetings and understanding diagnoses. We learned late for Tim. Not too late, just later than we could have. Should have. If you have a child that you think might have a mental health condition, I hope our story helps you realize that it’s not your fault. That your child can and does have a future. That you have the right to question everyone and everything. And that there are others out there, going through what you’re going through. And we’re here, ready to embrace and go through it together.
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