Photographer, Educator, Student, Mother & Wife Obsessed with sharing moments through pictures & words
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 […]
Amanda,
Joseph went through public schools here in Waynesboro. He had an IEP and went to the nurse’s bathroom to cath and deal with colostomy issues. 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.
If I can help, call or email me.
I get it.
Oh, Amanda, I am so sorry. I had to fight a smaller fight to get April into public pre-school, and that was hard enough! (her issue was that they claimed a lift-equipped bus couldn’t drive on a city road to reach our driveway. But every other vehicle somehow managed it? And there were battles from/with/over the school nurse to the point that she no longer works in April’s school. At all.)
One tip to pass along: I’ve found it is VERY helpful to have April in the room with me during all meetings. It keeps the adults from the school on their better behavior, and for those who don’t know her already, they can see with their own eyes how normal she is, despite the volume of medical information that comes with her.
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. Those other districts around you didn’t just magically decide to be supportive. Having someone bigger and stronger roaring on your behalf can help, especially with schools.
As someone who grew up with disabilities, I can totally relate. I was born with several medical issues and it was a fight for my mom to get me into a normal public school…just because I’m physically different doesn’t mean I’m intellectually any less capable than a “normal” student. We finally got me enrolled, and the fight still wasn’t over. The school tried to tell my mom she should take me out of school, and gave her info for schools that can “meet the needs” of a disabled child. Thank God my mom did not take that as an answer and fought ’till the end for me. Sure, school was a little more difficult for me…I missed a lot due to my doctors appointments and surgeries. And sometimes the school had to make special accomidations for me. But I graduated on time with a good GPA and now I’m in college doing just fine. Your son sounds like a fighter and like a strong little boy! Keep it up because you’re doing something right. Never let him lose his spirit. It won’t be easy, but It’ll be worth it! Good luck with everything!
Oh god.
I’m nervous about this for multiple reasons. I am both excited and nervous about the day that Logan will start school for the first time in a few years time. When I have to attend such meetings I plan on having him present for them in the room as well as his twin sister. Also I will have to get the contact information for my state and local representative just in case I need it. Hopefully I’ll be listened to and rightfully respected as a valuable member of the IEP team. This is the only part of being a SB mom which I detest wholly.
Truthfully.
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by Amanda Kern
17 comments