When I was pregnant with Nicky, the AFP indicated possibility that he had Down Syndrome. Throughout the pregnancy I prayed he didn't have Down Syndrome since I was sure that I couldn't handle it.
When Nicky was first born (at at times since then) I've been totally overwhelmed by the thought of the future and was sure I couldn't handle it. While he was still in the hospital I joined several Down Syndrome news groups, mailing lists and online forums. The information and new words were overwhelming, IFSP, OT, PT, IEP, hypothyroidism, hear defect, Hirshsprung's... the list goes on and on. Before leaving the hospital we were referred to early intervention, a program that provides therapy in home to children under the age of three with birth defects, and delays. we were also given paper work to apply for Medicaid for Nicky.
Once Nicky was home we realized that caring for a baby with Down Syndrome isn't all that different than a typical one. He was a little more floppy, we were worried about weight gain and he had a few more doctor's appointments. But day to day it was the same. I learned I could handle a child with special needs at home.
When Nicky was a month old we had our first visit from EI. A caseworker came with a nurse and a special educator. They complemented us on Nicky, how cute he was, all the things a new mother loves to hear. They suggested because of his tone we should have an evaluation by a physical therapist. She came a few weeks later and we started into the whirl of therapy, by the time Nicky was three he had 4 therapy appointments a week. But, along the way I learned that I could handle therapy and a child with special needs.
Turning three means a transition from EI to the school system as the provider of therapy and education for a child with a disability. For about a year before hand I was very apprehensive about the transition. The terms were sometimes different and the process was slightly different but the end result was the same, a group of therapists and teachers working towards Nicky reaching his full potential. Afterwards, I realized that my apprehension for Nicky's transition from EI to the school system was very similar to the transition of my older kids from preschool to kindergarten. And I learned I could handle a Nicky and the school.
Nicky's future as a teenager or an adult with a disability do overwhelm me at times. But, I realize that by that time I will be the parent of a adult with a disability not the parent of a preschooler. And I will be able to handle him and whatever come.
1 comment:
I have a much better feel for how this works, because I'm not even sure how much my nephew Nicky qualifies as a "special needs child." I can't see the labels because there is a boy standing right there. I see how he thinks, and I watch how he does things, and how he doesn't do things, and it all spells out Nicky, not some long acronym. We'll keep getting him the support he needs, but we have no idea if he'll need the extra help for the next five years, ten years, or fifty, or what. He's doing fine, and so are we.
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