CPF Executive Director Rachel Byrne and Christina Smallwood talk about parenting, raising a child with cerebral palsy and helping her learn to advocate for herself.
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.
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?
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.
It has been scientifically proven that enriched environment can help children with CP gain new skills in their movement but also their thinking and communication skills.
After we got the diagnosis we met with Dr. Maitre the next day and she gave us a roadmap.