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.
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.
When you use alternate means of communication it can be really frustrating to go out in community. It is hard to know whether people are understanding you and whether they will take the time to listen. A lot of times it's hard for people to admit that they're not always comfortable with a device or a wheelchair or person who does things differently. So the more we can expose and educate people the better off we all will be. When we talk about acceptance, we're not just talking about people in society accepting people with disabilities. We're also talking about people with disabilities who are using alternate means of communication and how difficult it is for them to be out in the community.
As 20% of women with CP surveyed experienced pregnancy, there is a need to increase awareness, education, support, and advocacy for achievement of optimal reproductive health.
This fact sheet has been created for women with cerebral palsy to provide answers to some common questions about CP, pregnancy, and birth. Women with CP should follow general guidelines about getting healthy before getting pregnant, but women with CP may need to do other things as well to prepare for pregnancy.
When first meeting a parent who's had a child newly diagnosed with cerebral palsy, I really want to try and help them understand their baby. It can be difficult for parents to take it in all at once and many leave that first interview quite overwhelmed, but you're going to meet some really important and helpful people.
Babies develop about 80% of their brain growth over the first two years of life, and it's also when all the connections in the brain, what we call the white matter, which is the cables in the brain, grow and develop and connect to the cortex.
Cerebral palsy is a damage to the developing brain in the motor part of the brain. Individuals with cerebral palsy have problems with weakness and sometimes also involuntary movements.
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.
A lot of parents don't realize that their baby, all the skills that they have. So they can look at you, they can follow you. They're already starting to imitate you, and through the first few months of life, they're already starting to learn to reach and grasp toys, and to have nonverbal communication with you.
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.