Written for both clinicians and families, this comprehensive guide to complex cerebral palsy utilizes the ICF to organize and guide the subject matter in order to assist both clinicians and families to maximize participation for those who are impacted more significantly by cerebral palsy.
For three editions now, a team of experts associated with the Cerebral Palsy Program at the Alfred I. duPont Hospital for Children have shared vital information through this authoritative resource for parents, who will turn to it time and time again as their child grows.
On this episode, I have the honor of talking with Wendy Pierce, MD, a pediatric physiatrist at Colorado Children's Hospital about physiatry, also known as Physical Medicine and Rehabilitation. This fantastic field of medicine can be helpful for individuals with cerebral palsy across with lifespan, but it has a confusing name and sometimes a confusing job description. So we set out to help listeners better understand what a physiatrist does.
An empowering and evidence-based guide for living a full life with spastic diplegia–bilateral cerebral palsy.
Our “Let’s Talk CP” podcast series kicks off with a great conversation about what questions to ask your child’s clinician when your child has cerebral palsy. How should you prepare for a medical appointment? What questions should you ask? Should you get a second opinion? Join Cerebral Palsy Foundation host, Cynthia Frisina as she shares candid talk, lessons learned and great advice with fellow moms, Wendy Sullivan and Jennifer Lyman. This episode is made possible with the support of Ipsen Biopharmaceuticals.
Neuroplasticity is the ability that the brain has to form new connections between different cells or between different areas of the brain.
We all have different towns and we all have different things that we do in the course of the day. It may be that the student is a great artist or a great writer. When it comes to assistive technology we have to think about what is going to give that student the ability to do what they love without having to see roadblocks and go, "I can't do that”. There are so many tools out there, whether it's a communication app, a video app, a math tool. With assistive technology you are not making the student into what you want them to be.
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.
Cerebral palsy is caused by damage to the infant brain. This damage can involve not only the motor parts of the brain, but also the parts that deal with vision. This is not related to damage to the eye but is related to damage of the parts of the brain that process visual information.
It's really essential to understand how brain function works to really tap into how learners learn.
Many of our products today have accessibility supports in them to the extent where we don't have to purchase anything else. It's already in there. Your phone, your tablet, your smart home devices. If you're going to look for these features on your devices, you can start in your settings. There should be something in there that says accessibility. Go in there, see what's available. The manufacturers have done a really nice job of describing these features right within the settings to give you a sense of what they're going to do.
There is insufficient research on adults living with cerebral palsy, (as referenced in my previous blog post on cerebral palsy and adulthood). Although there is a paucity of studies examining mental health in this population, medical researchers have speculated that the rate of depression is three to four times higher in people with disabilities such as CP than it is in the general population.
As a parent, when it comes to different types of interventions for infants with cerebral palsy, how do you know what you have, what you don't, and what you could get?
Exploration for an infant means discovering anything about that environment. If that infant needs an opportunity to be brought to them, that's okay. Let an infant explore through their senses, whether it's touch, or smell, or taste, or sight, or hearing.
Cerebral palsy is an injury to the brain, but what we find is that it has a lot of effects on how you use your muscles.
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.
For a child with CP learning to move, the really important things to remember are that the child should always be active.
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.
A speech language pathologist is someone who is trained in working with kids and adults. Everything from working with articulation errors and correcting things to what I do, which is working with people with profound physical impairments and getting them augmentative communication strategies.
The future of science advancements is endless. In this video Dr. Ted Conway discusses the possibility of thought to speech. One of the really interesting areas of research in biomedical engineering is thought to speech. The concept of thought to speech is fairly straightforward, the execution to make this a reality is a little more complicated.