1. Get your child involved in adaptive sports or recreational opportunities in your area.
These activities improve self esteem and give them a sense of belonging.
2. Join local consumer organization groups.
United Spinal and Spina Bifida Association are just two of many great options. These groups can be a great resource for info, and provide the opportunity to meet other families to network with.
3. Empower your child to be a part of the decision making.
As your child gets older, include them in the choices that concern their medical care. Ultimately, they are the ones that have to live with the results of those decisions for the rest of their lives.
4. Make transition plans
. Think about, and plan for, life changes that will take place when from advancing from elementary to middle school, middle school to high school, high school to college, etc. It’s also a good idea to have a transition plan for medical care teams - since kids eventually age out of their pediatric doctor’s care.
5. Add a Physiatrist to your child’s medical team.
A Physiatrist is a physician who specializes in Physical Medicine and Rehabilitation. If you don’t have any pediatric Physiatrist near you, try to add one to their adult care team.
6. Foster independence as early as possible!
Give your child household chores to do around the house, have them be part of their IEP meetings, teach them to do some of their own care such as bladder and bowel management programs or administration of medication, etc.