Struggling to Find the Positives by Heather Bowles

I’m having a hard time putting a positive spin on anything this week. I’ve had an early intervention specialist in our home once a week since before Tabitha was home even a month, because if anything showed delay, I wanted to know immediately. As a Special Education teacher, I understand that early intervention is of utmost importance, and I tend to overdiagnose even total strangers in public. Often on our weekend outings, I will lean in to my husband’s ear and whisper, “See that little boy? I suspect he has an autism spectrum disorder/cerebral palsy/mild case of Down’s Syndrome/ whatever I happen to have read about in the last month in an online journal of children’s medicine. We can call it hypochondria by proxy, perhaps. Sadly, I am more often than not correct in my assessments when they can be confirmed, so it’s difficult to cut the suspicious teacher voice off in my head, even in situations that are definitely not appropriate and just to enjoy the moment.

I had expressed concern with the flat place on the back of Tabitha’s head even at 2 months to her pediatrician, and was told “Don’t worry. She’ll grow out of that as she spends more time awake on the floor playing.”, but by her month 4 pediatric appointment, armed with a letter from the EI specialist, even her doc could no longer argue, and she was referred. We waited another 2 months, and as luck would have it, Tabitha was finally scheduled for an intake and assessment appointment with a therapist on the same day as her month 6 pediatric appointment. In the meantime, I did gentle exercises with her that I remember various school therapists doing with children who were immobilized by disease or disability, and our efforts appeared to be having the desired results. The EI specialist who comes to our home said last week that she was making obvious improvements in turning her head, and the flat spot seemed to be evening out. She gave me hope that by the time we got to the appointment, the technician doing the assessment would see nothing wrong with her, chalk it all up to mommy being overly watchful, thank us for coming in, and send us on our merry way.

That didn’t happen. Instead, we were sent home with a stack of paperwork diagramming new exercises to do, and told she has a “mild to moderate” need for therapy, which, once approved, will require us to drive across town once a week to get services, and she will probably wear one of those baby helmets for flat head syndrome for about 6 months. I am crushed. I’ve worked so hard to give my child everything she needs on our shoestring budget, but as the woman performed the assessment, she said repeatedly that this was, in all likelihood, unavoidable. Even her lie in utero is suspect at this point, as the therapist explained that she has a very high likelihood of having positioned herself similarly in the last six weeks of gestation to how she sleeps today. In short, there’s nothing I could have done to avoid this entirely, but she could tell from the shape of her head that we had been working on a few things because it was less pronounced than most children her age who had not received any treatment.

I look at my little girl, and I think of her as absolutely perfect, so to be told “Your child has a serious problem.” by people whom I have long trusted to know their business well disappoints me. Having endured physical therapy in childhood at the hands of my own mother, I am acutely aware of how painful it can be, and after listening to my daughter cry three to five times a day since Wednesday because of the things I am putting her through, I just want to throw the whole pile of diagrams in the trash and light a match. I need to keep going though. She needs this more than she can possibly understand, and if done right, she may never know the social injustices endured by children who are obviously physically different from accepted norms. More than the physical disabilities themselves, I never want her to have to struggle with the feelings of being less than or not good enough because of them. Children can be cruel, and frankly, so are adults. And you know what? My daughter is amazing. She can do anything, and she’s better than her mommy, so she will beat this. That’s about as positive as I can get.

Tags: early intervention, Flat Head Syndrome, occupational therapy, physical disability, special needs