I spent many years and many hours learning how to make the body work better, how to bring it out of pain. But that's not the human being alone.
One of the things that was identified through research is that patients with cerebral palsy have higher rates of depression and anxiety than you would see in the general population.
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.
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.
In order to get a good education, children need to access the curriculum. That's at the heart of their education. Some of the key challenges of getting students both their education and access to their voice in the class is simply understanding. Preparation for the student with disabilities is key. We have to foster success. We have to build a sense of success in the beginning. That starts with understanding the abilities of that student.
Saturdays were special as a kid growing up in Port Washington, New York. Saturdays meant Burger King outings with my grandparents, a great big slice of trade-marked Hershey’s chocolate pie for me and piping hot oatmeal for them. And we can’t forget about the Kids Meal toys. But on this particular Saturday, everything was different - at the tender age of five, I started to notice that certain aspects of my life were just off.
I don’t know if this is just me, but my time in quarantine has made me have weird flashbacks to my childhood. As a kid growing up with CP, especially with a speech impediment and mobility limitations, my lifeline to making and keeping friends was through AIM (AOL Instant Messenger, for those of you who are too young to remember) and one of the first video chatting platforms, ooVoo. Fast forward 15 years, many of us are in a similar situation. To slow the spread of COVID-19, most of life has moved online, including friendships.
As I progress in my career as a journalist and writer, the more attention and followers I receive on social media. Every so often, I receive a direct message or email from young readers, explaining how I’ve become a role model for them. They express the inspiration they gain from witnessing me not allowing my cerebral palsy get in the way of following my dreams. It was then that I realized I am now the role model that I desperately needed when I was a young girl.
I’m at that age when Facebook friends begin to get engaged and married, and shortly after, have children. So, I feel the pressure to proceed onto the next stage of my adulthood. But, as anyone with cerebral palsy knows, everything in life is a tad more complicated with this disability.
It's really hard just to watch someone walk to decide what's wrong with them. A better way is to do what's called Three Dimensional Gait Analysis, and that's where the child comes into one of our labs. Here, we put markers on their face, hands, and legs. We have a computer and a bunch of cameras all around the room. And then we're able to break down the gait into three dimensions.
I'm going to be talking about AAC and reading and some different things that you might not think about when you are doing those types of activities. When you're supporting reading for a nonverbal child, whether they use a high-tech system or a light-tech system, like a paperboard, you want to make sure that they have plenty of the opportunities to contribute to the experience. You want to be able to comment. You want to be able to talk about the people, the places, the things, and maybe the feelings that they have.
Every educator needs to make a decision about technology they need to put in place. They're not sure if they should put Option A in place or Option B in place. This can be particularly difficult in the world of disabilities because there might not always be a perfect answer. Teachers can look to this solution, using the least dangerous assumption to make good decisions about what technology might be best.
It's really essential to understand how brain function works to really tap into how learners learn.
Everybody tells stories, and that includes people who use communication systems. To ensure success and the ability to participate we need to make it as easy as possible. So that we can tell stories whenever we want, wherever we want, to whomever we want, and in a really easy way, so we can be successful.
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.
When you don't have enough evidence about a student's performance, assume they can do whatever you're asking them to do.
Although the brain injury that causes cerebral palsy is nonprogressive, adults with CP can experience a variety of symptoms as they age which often depend on the type of CP they have, as well as the level.