Misty Campbell is parent of child with complex disabilities who wrote this book as a guide for other families to advocate for their own children with significant disabilities.
Creating opportunities that enable play in order to combat social isolation, foster inclusive communities, and improve the quality of life for people with disabilities.
As we all know, becoming a teenager means significant upheaval, not only physically, but in terms of friendships, in terms of learning, and life outlook. This is also true for adolescents with cerebral palsy and other developmental disabilities. We know that whilst we may of spent a lot of time focusing on their physical abilities and other difficulties it is not the only part of their life.
Around the age of six all children are going off to school. Children move from explorative play, which is fairly informal to a much more formal day. That can be a lengthy day and it's quite structured. There are a lot of challenges faced by children with cerebral palsy throughout the school year.
Oropharyngeal dysphagia, or OPD, is an impairment of the oral or pharyngeal phases of the swallow. This can impair muscle movements and coordination of the mouth, such as the lips, tongue, jaw, cheeks, palate, and also muscles of the pharynx and the entry to the airway.
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.
When treating a child with CP, part of a pediatrician’s job is assessing and treating children with abnormal tone difficulties, as well as other muscular-skeletal problems. From around the age of two years, kids start to develop difficulties with muscle tone that can have an impact on their hip development.
When you're looking at setting goals for kids with complex communication needs, don't forget about setting goals that are about them interacting in the classroom. It's not just about punching buttons. It's not just about saying vocabulary words. It's about talking with people and showing who you are. Some specific goals that you can look at are in four areas. Educational goals, social goals, inclusion goals, and goals and independence.