I’ve been holding my breath for a while. A lot longer than a while, actually. In four short months, our Amy will be five. FIVE. It’s amazing to be how fast time has flown by. Turning five is a big deal though, because five means starting KINDERGARTEN.
Along with stressing about what school I should send my child to, there is the added stress about how I keep my child SAFE. It’s about educating teachers and staff, making sure the appropriate accommodations are made, making sure she is included as much as possible, not pushed past her limit, and that the classroom is as accessible to her as it is to the rest of the class.
Amy is currently in preschool in a regular public school classroom, and while we don’t have a 504 plan in place (I talk about what we’re doing now here.) now this is something we need to do. So, for those that don’t know, what the heck is a 504 plan, and does my kid need one? Well, if your kid has CPT, and you live in the US, then you need a 504 Plan. Essentially, it’s a plan (under Section 504 of the US Rehabilitation Act of 1973) that enables a child with a disability to be treated fairly, like any other child in the classroom. For example, all the kids sit at desks. Where can my child sit if she is in a wheelchair? Her 504 plan ensures she has a place to sit. All the children are running the mile, but mine doesn’t feel she can. What is the PE teacher supposed to do with her instead?
Some children with CPT may also have other academic concerns. Maybe they miss too much school, maybe they have other problems caused by NF1, or possibly something completely different, like ADHD. With academic concerns, then it’s best to see if s/he qualifies for an IEP (Individualized Education Plan). If s/he qualifies, then everything that would go into a 504 plan would go into the IEP, plus whatever individual extra supports your child needs. For more on the differences, you can click here. (You can ask the classroom teacher, or drop off a written request to have your child evaluated with the teacher or office staff. They have 15 days to get a plan together to test your child.)
Anyways, our neighborhood schools are… shall we say… less than stellar? So we put her in the lottery for 5 charter schools in our area. We were placed on the waiting list ranging from #36 to #84, and one at school she was ACCEPTED! (Cue the happy dance!) So NOW I can breathe. I know where she is going to school next year. The year starts in a little more than 4 months, but with less than two months left in the school year, we need to get moving on this now.
My biggest concerns:
- Educating staff: Getting them together so I can educate them about her condition, because let’s face it, none of them have probably ever seen another case, probably never will again, and the Googles are not particularly helpful. 🙁
- Educating students: It’s kindergarten, they’re gonna ask. What is the staff allowed to say?
- Safety Plan: What do do if Amy is hurt, or if she thinks she’s hurt.
- Physical help: If she’s in a wheelchair, she can’t carry books/lunch trays. What then?
- Recess: How do we handle bad pain days?
- Medication: How does she get it when she needs it?
- PE: Seriously… How do we handle this?
- Activity levels: What happens when her leg is tired, or she feels like she just can’t play a game, or __________?
- Using a wheelchair: Plus all the PITA stuff that goes with it…
- Attendance: Understanding for absences around appointments, hospital procedures/recovery, all that jazz.
Sometimes, I just wish my kid could just go to school like all the other kids without these worries. But you know what? My kid is a FIRECRACKER. Her attitude will carry her far, and dealing with CPT will help shape the person she is meant to be… I just hope the kids are kind to her. 🙁
