Nearly six years ago we learned our son would be born with spina bifida. One of our biggest fears had come true – we would have a child who was considered by society as “disabled”. So many fears we once had have come true. But Chance continues to remind us – his disability won’t hold him back.
Although he’s faced so many challenges since birth – we are beginning to sense we have just begun the real struggle to help our son. Those medical challenges he’s faced, the surgeries, the therapies and appointments – we look back now and realize they were nothing compared to the struggle we now face with the public school system. And to think – we have just begun this journey. Don’t be fooled by this ideology that we’re superhero parents – raising a child with special needs is HARD. It’s so much harder than we realized.
As Mr. Rogers once said, “Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? 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. ”
This quote has reminded me that the problem isn’t that our son is “disabled”. 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.
Today we attended Chance’s IEP meeting before he is scheduled to start Kindergarten this August. 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. Our son’s medical team agrees with our request. Regardless of if we have staff in the school willing to help, the district told us today they are unable to approve our request. Instead, they’d prefer to have him attend school at the center school for medically disabled children. Although they do have a mainstream class that he’d be able to attend – he would be asked to go to a school where many other significantly disabled children are sent.
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. And as they began to quote district policies and their own stand point – over and over I heard them refer to the “safety” and their “protocols” – not what was in the best interest of our child…but what was in their best interest. Never once did they share these policies with us – and they feel they can supersede the state law to be “safer”. We haven’t even begun school and the school system is more worried about a liability than how much they can support a child who could thrive in the school all of our children have attended. 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.
Most days Chance asks us “Do I get to go to Riverdale now?” often followed by “are you still fighting for me?” To the school system they don’t think it’s a big deal to just send a child to any school – but for years our son and our family has looked forward to the day he would start school at Riverdale. We never once thought of another option – we honestly didn’t think we’d have to fight this hard. This is one of the hardest lessons we may need to teach our son…and just the beginning…that not everyone will perceive his “disability” the same as we do…and that we are going to have to fight sometimes – not for what is easiest – but for what is right.
Our son hasn’t even begun school and we are in the process of filing a complaint to request a due process hearing. He hasn’t even started school – and we have to go through these measures. There is something so wrong with this. Families raising a child with special needs go through enough – we shouldn’t have to fight this hard just to enroll our child in school. We are working with a school system where many educators within their school system have said they are the “worst” at meeting a child’s special needs – a school system that isn’t receptive to change or willing to adapt to meet a child’s needs. Please don’t tell me about “policies” when you can’t even provide them at a meeting – besides, as an educator I’ve learned there are rules to be followed – and rules worth breaking for the sake of a better outcome. You can’t say it’s not possible – I’ve learned of countless families who have received the support in other counties. It just makes no sense at all why one of the largest counties in the state of Florida isn’t receptive to meeting a child’s needs – not the school’s needs – but a child’s needs. Serve a child in their home school when parents request it – it should not be this hard. Cathing is not that hard…and please, don’t feel bad for us or our son because he requires cathing – feel sorry for the school system who isn’t willing to adapt to a child’s needs…they are the ones with the real disability.
Five and a half years ago we wanted to give up so badly when we learned about Chance’s spina bifida…this journey seemed like it would be too hard. It is hard. But it’s also rewarding and so meaningful. We know we are on this journey for a reason. Five + years ago we didn’t think we were capable of raising a “disabled” child. And at the time we were frightened of the thoughts of cathing. We’ve been battling the school system for nearly a year and a half and here we are frustrated feeling once again like giving up might be “easier” – to just do what they wish. But our job isn’t to make life easier for the public school system – the day we promised not to give up on our son’s life – we promised we would fight for the rest of our lives…for everything our son needs.
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. Instead of worrying about their own liability they should be worrying about what is in our son’s best interest. Someday I am hopeful the school system realizes as Chance tells us – cathing is “no big deal”. I vow to continue to remind the school system just how “disabled” they are every time they make our lives harder because of our son’s disability.
by Amanda Kern
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