School orientation for my son was everything I hoped it’d be
Changing schools is extra complicated for children with Pompe disease
Back in May, we made the hard but necessary decision to move to a new place. Our old apartment was just too small for our growing family. Plus, it wasn’t very accessible for my 6-year-old son to navigate with his wheelchair. We were on the hunt for a place that could better accommodate Cayden and his needs.
Luckily, we found a new home fairly quickly. It’s bigger and a lot more accessible than our old place. The only downfall is that it was in a different town, meaning that we’d have to switch Cayden to a different school district. While this isn’t something any parent typically enjoys doing, it was especially hard for us.
Because of Cayden’s infantile-onset Pompe disease, he requires a bit more help and care than most children his age. He needs help getting from place to place in his wheelchair because he can’t walk. He also requires assistance with using the toilet and getting his diaper changed because he has bladder incontinence. Lastly, he is fed via a gastrostomy tube and needs to be given lunch during school hours.
Because of his extra needs, Cayden has his own personal nurse who goes to school with him each day. She’ll be taking care of him at the new school, which I’m grateful for since she already knows him well. She does a great job with Cayden, and he enjoys having her around.
We’ve been eager to see how things will work out at the new school. Last week, we finally got the opportunity to attend a new student orientation to check out the school and meet all of the staff. Cayden’s nurse attended and got to meet all of the new faces, too.
Everything I’d hoped for
Before viewing the building, a group of us sat down to chat about Cayden and his needs. The meeting was attended by Cayden, me, his nurse, his new teacher, the school principal, the school nurse, and a few others who will be getting to know Cayden pretty well over the next school year.
As expected, none of the new staff had heard of Pompe disease and how it affects Cayden. We’re used to this, as Pompe is such a rare disease. I never knew about it either until Cayden was diagnosed via newborn screening.
I explained a little bit about Pompe disease and the fact that Cayden would have to miss a day of school every other week to stay home and receive his enzyme replacement therapy infusions. Then we went over all of the therapies and help Cayden will receive at school. These include physical therapy, occupational therapy, speech therapy, and a learning support teacher.
Cayden received all of these services at his previous school, but learning support will be new this year. After Cayden completed all of the tests last year in kindergarten, it was clear that he needs a bit more support when it comes to math and reading. He missed some class time in kindergarten due to therapy and needing to have his diaper changed.
Thankfully, the nurse and Cayden’s new teacher went over the daily schedule and figured out the best times to do all of these things. It seems like he will get more time in the classroom learning with his classmates this year, which is something I am adamant about.
Next, we viewed the new building and even got to ride in the elevator because the building has two floors, which Cayden thought was so cool! His classroom is on the first floor, but he’ll need to go upstairs for art and music classes.
Lastly, we discussed what drop-off and pickup will look like. He’ll be riding in a wheelchair-accessible van to school, like he did at his old school. They decided it would be best to have Cayden enter and exit the building at the side entrance. Doing this ensures there will be no rush to get him loaded and unloaded while other children are getting on and off of the buses.
All in all, I am ecstatic about the new school. I don’t doubt that they will take great care of Cayden. It makes me happy to know that there are people who are just as eager about my child and his education as I am!
Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.
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