The American Academy of Pediatrics has updated its recommendations for Primary Care Providers to provide a "Medical Home" for children and youth with cerebral palsy. This comprehensive update gives primary care pediatricians the guidance they need to address the many needs that children and youth with CP experience and coordinate care across disciplines. The Cerebral Palsy Foundation has created a checklist to help guide you in raising your child with CP to living the healthiest life possible and ensure that you and your pediatrician are addressing all of your concerns.
The hardest part of raising two children with Cerebral Palsy is the fact that we live in a world that refuses to adapt to anything beyond ordinary. And I have always -- always -- known that Benjamin and Mason were far beyond ordinary.
We got the diagnosis of Cerebral Palsy when Lelia was 18 months. I was really happy, as we didn’t know what was wrong with her before then. She had low tone. She couldn’t roll over. She couldn’t sit up. Of course she didn’t walk. The diagnosis gave it a name, something I could work with, and I became a kind of vigilante mother, determined to get the best care for my daughter.
A parent's perspective as she recalls the moment she realized that a wheelchair meant freedom for her son and not a barrier to his progress.
My boys were exactly the same amazing, lovable, adorable, brilliant little boys after the diagnosis, that they had been before it. The exact same.
For women with Cerebral Palsy, self-advocacy is probably the most important part, but it's also probably the hardest part because most of those doctors have not encountered women with disabilities. You really have to tell them what you need and tell them what to expect.
When scheduling and preparing for an OB/GYN appointment, women with Cerebral Palsy have additional challenges to consider and address when both scheduling the appointment and once they go their appointment.
For women with Cerebral Palsy, finding a new OB/GYN can be difficult for a variety of reasons: accessibility (both to the building and in the exam rooms), staffing and supports for additional physical needs and more.
5 things for women with Cerebral Palsy to consider when preparing for their OB/GYN appointment