I often get asked about strollers and wheelchairs, especially from newly diagnosed families who might be transitioning from the active toddler to a more difficult to control and behavioral MPS child with lots of doctor appointments but with danger and difficulty around every corner.
For several years, I have re-copied an e-mail that described our stroller/chair journey, how we made certain decisions, and how we fought for Case’s needs. I never wanted to post it because the decision for a chair and specifically what type of chair (and the fight to get it) is often highly unique to a specific child and his or her needs. But this is a decision and journey faced by so many of us, and I’ve come to see so many parents unhappy with the piece of equipment that they finally receive that I thought it important to finally write particularly about this issue and hopefully inspire additional commentary by others with their insights as well. So hopefully this entire series will be taken with that caveat in mind.
Let’s tackle this issue in three parts:
These topics are not sequential – the issues and tasks all overlap. Part 1 provides the context and Parts 2 and 3 elaborate on particular topics from Part 1.
So if you’re well-versed in this topic, gather your thoughts and prepare to post and share your unique advice. We can all learn from one another’s experiences so that the next similar challenge that someone faces is not nearly as difficult.