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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
