Nearly six years ago we learned our son would be born with spina bifida. So many fears we once had have come true. And to think — we have just begun this journey. As Mr. Or talk about their feelings? Or manage their feelings in constructive ways? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love?
These, it seems to me, are the real disabilities. Sure, he may need help walking, he may need a wheelchair, he may require additional medical care, including being catheterized — but the reality is the real disability remains in the school system. We were hopeful and took every measure to clearly outline our requests and even have had every pediatric urologist in the central Florida area who cares for spina bifida patients sign a letter approving our request for a non-medical person to be trained to do his care.
Regardless of if we have staff in the school willing to help, the district told us today they are unable to approve our request. When we discussed the topic of his cathing support needs, the school refused to consider our request — it was clear their minds were made up before the meeting even began. Taking our son away from our home school and from his brother would only harm him socially — and asking them both to relocate to the school the school wishes will affect our entire family negatively.
There is something so wrong with this. Serve a child in their home school when parents request it — it should not be this hard. It is hard. We know we are on this journey for a reason. And at the time we were frightened of the thoughts of cathing. We will fight — for Chance…and for every single child who may someday need support cathing in school. A change is needed — and laws need to be improved so that schools are held accountable. Joseph went through public schools here in Waynesboro.
He was in a wheelchair as well and the teachers knew he was to be allowed to go to the nurse whenever he needed. He also had access to water at all times. I had to fight a smaller fight to get April into public pre-school, and that was hard enough! But every other vehicle somehow managed it? At all. Contact your representatives. Local level. State level. Federal level. It helps. It really, truly helps, if you can get their offices working on your side. Having someone bigger and stronger roaring on your behalf can help, especially with schools.
