Reaching a Milestone as We Prepare for Kindergarten

Soon, I will attend a meeting to discuss transitioning my 4-year-old son, Cayden, to elementary school during the next school year. I’m both nervous and excited about the meeting and the transition. I knew this day would come, but it feels as if it snuck up on us faster than I was expecting.

Cayden will be my first child to start kindergarten. The process will be different from that of most children his age because Cayden has infantile-onset Pompe disease, and he hasn’t been in a traditional school setting yet.

We tried preschool but pulled him out after a few months because he ended up getting very sick and was hospitalized for months. We planned to try again this year, but all of the classrooms in our area were full, so he was placed on a waiting list.

Thankfully, his body and immune system both seem to be a bit stronger now, so I’m hoping this transition will be different than it was for preschool. However, I can’t help but fear that he may end up sick again. I can’t keep my child in a bubble, though. I think public school will be beneficial to him in many ways, so it’s only fair to give it a shot.

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Planning the future

Getting Cayden prepared for kindergarten is bittersweet. I’m hopeful it will be good for him. He loves interacting with other children his age. I find this age fun and encouraging for him, because it seems as if most children recognize him for his abilities, not his disabilities. I can only hope for things to stay that way as he gets older.

Cayden will be in a classroom designed for kids with special needs, but I will make it clear that I want him to have the opportunity to be involved in bigger settings as well. I want him to be able to participate in art class, the library, music, and other topics. He really enjoys these types of things, so I think it’s important for him to experience opportunities with his peers.

The good thing is that Cayden will have an individualized education program (IEP). This is a legal document that ensures that a school must meet the needs of a child with special needs and support them with whatever they need.

For example, Cayden will be eligible for therapies in school. Because of this, the school must provide time for him to receive speech, physical, and occupational therapy. He will also have a nurse with him to help him get from place to place, as well as administer his feedings through his feeding tube.

Although he is eligible for an IEP, it is up to his current home-based therapists and me to advocate for him. We must make it clear to school officials what exactly we want for him so that it can be included in his IEP.

This is all new to me, but I’m confident things will go smoothly. We aren’t the first family in our district with a child with special needs, so I’m hopeful the transition will be a good one.

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.