My son is finally riding to school in a wheelchair-accessible van

It's a welcome upgrade for my 5-year-old with Pompe disease

Keara Engle avatar

by Keara Engle |

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This school year is the first for my 5-year-old son, Cayden. He attended preschool when he was younger, but now he’s in kindergarten at a public school, where things work a little differently. One of the biggest of those differences is transportation.

For preschool, parents were required to handle their children’s transportation. I also had to take Cayden on field trips if I wanted him to attend because the school didn’t have an accessible vehicle to transport him in. Once kindergarten started, that changed. Our school district provided his transportation to and from school and on field trips.

Last summer, when the school year was about to start, I was informed that this transportation was available for Cayden. But not in a wheelchair-accessible van, I was told, as the district had none. Since Cayden needed his chair for class, we had to leave it at school for his use there. It wasn’t ideal, because Cayden cannot walk at all because of his infantile-onset Pompe disease and depends on his wheelchair or a stroller to get around. But without a van for wheelchair transport, that plan was our only option.

For the first half of this school year, Cayden rode to and from school in a car seat in a school-provided normal minivan, as he isn’t able to support himself enough to use a booster seat. While it wasn’t a huge deal to use a car seat, his nurse and I were having a harder time lifting him into the seat. He’s only getting bigger and heavier, so the sooner we could figure out another solution, the better!

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A welcome change

That’s why I was so excited to receive the long-awaited phone call from the school district last week, which informed me that they’d found a wheelchair-accessible van to transport Cayden and his chair. I was beyond relieved that we’d be able to send him to school in his wheelchair and get it back at the end of each day. And I must say, Cayden is enjoying the change.

Sitting in the wheelchair is more comfortable for him because it has more padding than a typical car seat. It also makes him feel a bit more like kids his age, who mostly use booster seats rather than car seats.

It’s also a huge help not to have to transport him to and from school, as I did when he was in preschool, especially since I have a 13-month-old. Getting both Cayden and his little brother, Kyree, loaded into the car for any trip can be challenging. I save a lot of time just sending Cayden off to school in his wheelchair.

I wish we had our own wheelchair-accessible van for our trips aside from school, but they can be expensive. We don’t have the necessary funds at the moment, so we still use a car seat when he’s in our vehicle. I’ll keep hoping that one day we’ll get a wheelchair-accessible van, but for now, we’ll enjoy this opportunity from the school district.

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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