Friday, November 6, 2009

The Dark Side

Two readers whom I have not met both commented that some of these entries were like a window to the future. One has a four-year-old daughter and the other a son in seventh grade. Their children have been diagnosed with social communications issues, or other similar learning disabilities.

To date, I have written mostly positive entries that try to demonstrate how easy it can be to help these kids. Yesterday I was reminded forcefully how hard it is to get that message out there.

When my son was a toddler, he was twice “expelled” from day care. The first time, he was about 16 months old and attending a day care center connected with a major New York City hospital. At that time, he had been hospitalized twice for seizure activity, which was still not fully controlled; he was also exhibiting signs of relatively minor developmental delays. On a spring day, he had a seizure while at day care. The director called me at work to let me know they were sending him – by ambulance – to the emergency room. Because the emergency room was particularly busy that day, he was rerouted to another hospital (but that’s another story). I eventually found him; he was sleeping off a minor seizure and released to go home.

When I next arrived at the day care center to drop him off, the director pulled me aside and told me that my son “really needs one-on-one care.” She pointed out the things that he could not do, that most other children his age were adept at – eating and drinking independently, for example. She suggested that he could stay one more month to give us time to find alternative arrangements. Generous, eh?

The alternative arrangements turned out to be a new job for me, in a new state, with a new day care. The teachers were aware of his health and developmental issues, and for the first few months everything was fine. However, my son was 22 months old when he, out of the blue, started falling down. Within a day or two, he could no longer walk or even stand. He was admitted to the hospital (for the third time in his young life) and the diagnosis was acute ataxia, possible from an ear infection. They ran a substantial number of tests, looking for something metabolic, but found nothing (although those results were not known for a few months afterwards).

He was discharged with physical therapy recommended, and my mother came and spent a week with us taking care of him. Four days after he was released from the hospital, my mother called me at work to say “He stood up all by himself!” And a week after that he was back to walking and we brought him back to the day care center. The director called my husband and me in to a meeting and told us our son, “really needs one-on-one care.” BUT, she also gave us the name of a social worker for the city who would do further evaluations.

After further evaluations – testing and a detailed health and developmental history – the social worker said he didn’t need one-on-one care; he just needed the right care. We enrolled him in a preschool that turned out to be truly spectacular. He began getting speech, occupational and physical therapy. When we moved away three years later it was with an evaluation in hand that would become the basis for the next twelve years at public school. And things got better and better each year.

And this brings me to what happened yesterday at his college. We got a reminder that not everyone is as tuned in to learning disabilities as they perhaps should be – especially if they are in education. But since this is so long, and the rest of the story will also take some space, I will leave that for next entry.

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