Doctors are mostly about treating specific diseases. They are not into lifestyle stuff.
Other parents, therapists, teachers, anyone who is around might have some experience or have a lead on the information you are looking for.
Need some good ideas on how to keep a diaper from leaking?
Need to know if gagging when using a feeding a tube is normal?
Need to know how to get a kid going in a walker when his foot won’t lay flat?
Need to know how kids spend their days when school is out for the summer?
Your doctor is not going to be much help on any of these questions – its simply not their realm of expertise. Your doctor cares if your child is disease free, getting enough calories, and has no infections. Beyond that, you need lots of people in the community for information and ideas on how your child lives on a day to day basis.
The first key to planning your special needs child’s future is to build a community of caregivers, one that includes a diverse group of people who have some interest in your child and who can provide additional eyes, ears, experience, and voices on behalf of your child. A complete plan for your child’s future includes a plan for finding and keeping others in your child’s life. For a few ideas on how to do this, check out this video –