Despite my worries, my son with Pompe is making friends at school

We're celebrating the preschool social life that's emerging for my 5-year-old

Keara Engle avatar

by Keara Engle |

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My 5-year-old son, Cayden, recently started a preschool program. When he started going, I was a little paranoid about whether he’d make friends. After a month there, however, he sure has made a few.

I was concerned because Cayden has weak muscles from his infantile-onset Pompe disease; it’s left him immobile, and he uses a wheelchair to get around. Most children his age haven’t had the opportunity to be around anyone who uses a wheelchair. They’re used to being able to get up and run around whenever they please, but Cayden isn’t able to do that. I was scared that he’d get left behind, but some of the kids in his class ensured that didn’t happen.

On his first day at preschool, two boys and one girl immediately took a liking to him. It warmed my heart to see them interacting with one another. They were on the floor playing with blocks, putting puzzles together at the table, and drawing with chalk on the sidewalk outside. His teacher sent me pictures throughout the day to reassure me that he was having a good day, which helped ease my mind.

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The only time it’s a little hard for him to be involved and incorporated with the other kids is when it’s time to go outside for recess. The playground at his school isn’t very accessible for wheelchair users. While that isn’t anything new for us, it’s still pretty unfortunate. Thankfully, he has amazing teachers who help make sure he’s included outside.

Aside from drawing with chalk on the sidewalk, another activity he enjoys is playing ball with some of the other children. He’ll throw the ball to them from his wheelchair, and they’ll chase it and bring it back to him. When the other children are busy playing on the playground equipment, he’ll typically play with cars, blocks, or other small toys to keep himself occupied.

My favorite moment is when I pick Cayden up from school each day. There’s another little boy in his class who says “Bye, Cayden!” every day, and I think that’s the sweetest thing ever. To know that someone enjoys his presence that much makes me so happy.

I’m thankful that the children have taken a liking to him and made him feel included. He enjoys going to school, aside from the anxiety he gets when I drop him off. Once he gets inside and around his teacher and peers, though, he’s OK.

I feel that Cayden benefits from being around other children his age because he hasn’t had the opportunity to do that, aside from my younger siblings. My hope is that his social life will be just as great when he attends kindergarten in the fall.

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.


brian white avatar

brian white

That's so nice to hear about your son! Little kids can be tough - they can be doing things that hurt other's feelings without even really knowing it. I know even at my age I am very self-conscious about how Pompe makes me walk and talk. Glad things are going well.


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