Our educational series kicked off with a panel of experts from the Weinberg Family CP Center at Columbia University Irving Medical Center in New York City on Thursday, November 5th, 2020 at 6:30pm ET. This virtual event featured a multi-disciplinary panel discussion with Weinberg Family CP Center clinicians and researchers.
Children with cerebral palsy have more complex self-management and self-care demands than children who are typically developing. They have to learn how to deal with medications and they may have to deal with medical equipment. At some point, they're going to have to learn about medical appointments.
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.
There are a couple of key things to think about in helping children and adolescents make the transition into young adulthood and independence. One of those things is called mastery motivation and we can see mastery motivation early in life. It's the ability to persist in the face of challenge. If you're growing up with a disability, it can be harder to do things. If you are not challenged, if the environment is not set up correctly, or if you don't have the resources, then you start to feel that you can't master certain kinds of tasks.
5 things for women with Cerebral Palsy to consider when preparing for their OB/GYN appointment
Let me tell you about multimodal communication. We, as typical communicators, all use many different strategies. We use speech, gestures, facial expressions, technology, and no-tech solutions. As communicators, we all size up the situation based upon our communication partners, the context, the environment and then we choose to use the most effective communication strategy.
If your child has cerebral palsy, there's a good chance that he or she will have a hip x-ray at some point or they may even require regular hip x-rays. It is important for you to understand the different components of a hip x-ray. Your doctor will be looking at the hip joint itself as well how well the bones are growing.
In general, children with cerebral palsy will have stiffness around the hips and they tend to develop atypical hip positioning as a result of their spasticity. They will develop hip flexion contractures, abduction contractures, and they will have difficulty with seating as well as bathing and hygiene.