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I often like to share with others what my life entails just so that people can perhaps understand a little more about what it’s like to live with a disability.
I was born in 1999 with cerebral palsy, CP for short. A part of my brain called the basal ganglia was damaged during childbirth. This is the part of the brain that controls all motor skills, so I have to work my body very hard to do what you can do very easily. I am non-ambulatory and non-verbal. This simply means that I use a wheelchair to get where I want to go and a computer to communicate.
My days are very busy. I attend a public school, where I sit with my one-on-one provider in a regular classroom, until I feel like I need to stretch my legs or body and then I go do some therapy for a while. For the most part I like the classes, but I like being with my peers a lot more. Sometimes I make them laugh because I make noise in the classroom when I’m not supposed to.
After the school day finishes, I have more therapy sessions to attend. I go to a gym for my physical and occupational therapy and I go to a pool for my aqua-therapy. Then I have speech therapy out in the community where I use my computer to communicate. These therapists help me improve my coordination, range of motion, and movements. I also receive massage therapy which helps my muscle tone and relaxes all my muscles.
When I get home, I am greeted by my care providers (my parents work as teachers) who help me get my homework done and get me ready for my evening with my parents. My home providers are the best! They are so helpful to me and most of the time they do exactly what I want!
I am a huge movie buff, so I own quite a few movies. I love swimming all year round, as it feels very comforting for me. I also like to play the Wii, read books, ride my trike, do arts and crafts, and go to the mall.
With my disability, I am exposed to a lot of adaptive equipment. I have two wheelchairs, a feeding/activity chair, a bronco (walker), a stander, a trike, and exercise equipment.
I work very hard every day and I am driven to achieve small and large goals for myself. One ambition of mine is to acquire a little more independence. I would also like to become more effective in communicating with people. This is something I work very hard at every day. I also work towards having better mobility in all my therapy sessions. This might seem like small or insignificant goals to some people, but reaching these goals would be life-changing for me.
Like all teenagers, I like having friends. When my friends come over to watch a movie or just talk to me, I love it. They know to be patient with me and they treat me the same way they would any other friend even though I need help doing most things. That is really cool. When I meet someone for the first time, I like it when they ask questions about my disability because it means they care and I want them to be comfortable around me.
My parents are pretty cool. They tell me all the time how they wouldn’t want me to be any other way because they love me so much just like this. Sometimes I know I’m not easy, especially when I don’t want to do something they want me to do, but I know that they will love me forever. So you see, living with a disability is challenging, but I still have goals, dreams, and aspirations just like everyone else. My life consists of completing these goals, dreams and aspirations, much like yours. Just differently.
At Robbie Foundation, 100% of funds raised go to Maine children with special needs for the equipment, technology, and/or therapy treatment they need, but isn’t covered by insurance.
P.O. Box 1534
Scarborough, ME 04070
helpachild@robbiefoundation.com