I’m overwhelmed by all of the things to consider when moving out

Changing schools isn't easy for a child with infantile-onset Pompe disease

Keara Engle avatar

by Keara Engle |

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Life has been a bit hectic lately. My family has many changes coming up, and each one brings its own challenges.

I’ve lived in the same town for most of my life, as have my children. But that may soon change. Our family is growing, and we’ll be welcoming another little boy into our lives in September.

Expanding our family means we’ll need a bigger place. Our current apartment has only two bedrooms, which has worked until now but is no longer feasible. My oldest son, Cayden, who is 6, has his own room. His little brother, Kyree, who is 1, shares a room with me.

With the addition of another baby, we’ve been looking at three-bedroom apartments, but the housing options in our town are pretty limited. We live in a college town, which makes it difficult to find a place. It took me years to find our current apartment.

Since we’re in a time crunch, we’ve expanded our search area. I’ve been looking at places up to a half-hour away. While it’s not a dramatic change, it will be a bit stressful. Cayden has infantile-onset Pompe disease and needs many accommodations at school.

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Tough decisions

Our current school district is the same one I attended while growing up, and I was quite comfortable with Cayden going there, too. They’ve been amazing with him since he started kindergarten this school year. Staff at his school has been accommodating to each and every need he has. They even went as far as installing an accessible swing for him on the playground so that he could enjoy recess like the other children.

He has a nurse who attends school with him every day. She travels about 35 minutes to get to the school already, and I’m not sure how she would feel about driving farther than that. If she can’t, it’s another hard bridge we’ll have to cross. I absolutely love his nurse, and it would be so hard to see her go. Finding a nurse who can attend school with Cayden isn’t an easy process, because there’s a nursing shortage in this area.

If we were to switch school districts, we’d also have to transfer his individualized education program (IEP) to a new school, which is a process I’m not familiar with. However, I know how time-consuming it was to get his current IEP in place, so I’m sure it will be just as much of a process at a new school.

All of these factors have me thinking long and hard about the whole situation. I want my children to have a home big enough to comfortably live in, but I’m nervous about what the changes would mean for Cayden. I worry that it would be a hard adjustment for him. He’d be in a new school with new children and possibly a new nurse.

Hopefully, we can find a suitable home in our area, but I won’t get my hopes up. I’m used to making hard decisions for my children, but I’m scared to make this 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.


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