Friday, May 17, 2013

Here's Your Broken Kid

Friday, July 2, 2010

That's what I feel like everyone has said. I don't know anything
about having a child with special needs. This is all new to me. I
don't magically know all the right things to do. I don't know all the
possibilities for things that can help Eliah.
We were visited by Early Intervention this week to discuss school now that Eliah is three. We were told our options are to either put Eliah in preschool five days a week, six hours a day, with no nurses, or we could have Home Bound school where someone comes to the house for an hour a week to "teach" Eliah. How can his medical/sensory needs be met in a preschool with no nurses? And how can he learn in one hour a week at home? Guess what, those aren't our only options. We can fight for private placement with a nurse at his side.
You know what, that's fantastic. But it took someone (my sister), who works in the school system, to tell me that I have that option. How would I have known otherwise? Where are the people that are supposed to be telling me these "inside" details? What else are we missing out
I feel like am always in the dark, feeling my way around, and occasionally stumbling on something useful. I feel like nobody (especially doctors) wants to take responsibility for going outside the norm, which is what Eliah needs most of the time. At five months, the Neurologist suggested that we not get Eliah vaccinated due to his seizure disorder, and because of his Hemophilia, couldn't get them intramuscular anyway. We did what he suggested. Now Eliah cannot go to school or daycare without the vaccinations. None of the doctors, three of them, will sign a medical waiver because of liability.
The Neurologist, striving to be on my sh*t list, agrees that standard medication and treatment does not work on Eliah, but refuses to try anything new because of liability. He is going to refer us to another doctor, hours away, that may or may not be willing to try something new. Why does it always have to be difficult?
We have obstacles every day like this. The runaround is so frustrating. For example, Eliah is running a fever this week. He feels horrible. Who do I call? The pediatrician doesn't know
anything about Eliah's medical conditions. He is not an expert with Hemophilia or Cerebral Palsy, or sensory disorder for that matter. But I can't call the Hematologist unless his fever is 102, cause then it may indicate a port infection. Usually by then, Eliah has a seizure. The Neurologist is who to call for a seizure, but he doesn't treat fevers. So, my hospital bags are packed, and I am just sitting and holding my little man.
I am frustrated that the doctors don't talk to each other, or to Eliah's therapists, to come up with a best course of action/treatment. I have to tell each doctor what another has said. Is that really the BEST way? I am frustrated that the programs to help Eliah remain "secret". And even when I am told things, that doesn't mean I know what they are talking about. I don't know programs or forms by their acronyms, I am new to this. There is no class on being a special needs parent. I am frustrated that I am just supposed to know everything. And finally, I am frustrated for all parents that have to go through the same thing.

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