Taking Cerebral Palsy (Back) to School

It has been a busy month... I gave three presentations in less than ten days between October 26th and November 1st - two virtually on zoom to different special education classes at my alma mater Holy Family University and one in person at an elementary school I actually attended for a year. Each presentation was different, but it was great to connect with each audience especially the fifth graders in person and I also got to meet the principal's very friendly emotional support dog! And I still remember my dad's face when I came home that night and shared how nice the principal's dog was and how if that breed could be bred to be a service dog I could maybe see myself wanting one down the road eventually...

On Tuesday October 26th, I gave a presentation virtually on zoom to Dr. Arango's class at Holy Family University for the second year in a row. Last October after I posted How to be a respectful communication partner to AAC users, Dr. Arango asked me if I would speak about it and my experiences with AAC to her class and she asked me to do it again this year. I am grateful for this opportunity and very grateful that some of my related service providers from my earlier education joined me as the students asked me many questions that I had no idea how to answer and or about things I did not cover at all such as what was done at certain IEP meetings.

On Thursday October 28th, I gave a presentation  about my cerebral palsy in person which was really cool to fifth graders at Belmont Hills Elementary School in Bensalem, Pennsylvania where there is a girl with cerebral palsy in the grade. I did a similar presentation to second graders three years ago in October 2018 at Afton Elementary School in Yardley, Pennsylvania. I spoke about similar things and I also showed pictures and videos of me doing many different things such as riding a horse, riding a tricycle, hitting a piñata, swimming, swinging, hanging out with my friends and family, and physical therapy. I named this presentation Rolling with It: Taking Cerebral Palsy to Belmont Hills Elementary and Beyond! and in my opening I shared how I actually went to sixth grade at Belmont Hills Elementary School.
I then went on to explain cerebral palsy: “As you probably have heard I have cerebral palsy. Cerebral palsy is not contagious, you can’t catch it. Having cerebral palsy does not mean that you are sick, it means that your brain has a hard time talking to your muscles and that makes it hard for you to move properly.. I still understand everything and can laugh with my friends. Cerebral palsy affects my movements.  It is harder for me to move my arms, legs and mouth. My brain doesn’t tell my muscles to relax and do what I want them to do, it takes me longer to do things and I often need to do things differently or have someone help me. I use my power wheelchair to get around and when I was younger used a walker.  I use my iPad to help me speak. I can talk but sometimes it is difficult for people who do not know me to understand what I am saying. Even though you ask a question and I don’t respond right away it doesn’t mean that I didn’t understand you or that I don’t have an answer, sometimes my voice just gets stuck and I can’t respond so being patient helps. It is also great to talk to me and not the person who is with me. During school I have had many people in and out of the classroom help me. I have had physical therapists, occupational therapists and speech therapists help me to figure out how to make my body work for me. All people with cerebral palsy are not the same. So every person with cerebral palsy may not use a wheelchair, some may use a walker and others may walk without any assistance.”
I really tried to emphasize "We have more in common than you think and because I need help doesn’t mean that I always need or want help, it’s best to ask and it doesn’t hurt my feelings when someone asks me questions. I was raised to believe that having a disability should not stop you. While in college, I created a club called IDEA to bring students of all abilities together to accept and support each other and just have fun. Maybe some of you saw the movie Wonder. It’s best to be kind to others and treat them the way that you would want to be treated. People with cerebral palsy are normal people who want to play and do all the things that everyone else is doing. We want to be included and recognized. Sometimes eye contact and a smile can go a long way."
The kids were very engaged and asked a lot of great questions! And thankfully for me this time no one asked “How did you get cerebral palsy?” and the flustering whopper followed “How did you lose oxygen when you were born?” which I made my mom answer when a second grader asked at my presentation three years ago. The funniest questions I got this time were if I liked pizza and if I ate pizza everyday from multiple kids and I guess I did mention "Everyone is different, just like you guys. You might like pizza and the person sitting next to you may not." and maybe that was what prompted these questions.
It was really cool to see how much my little buddy grew and this time answer some of her own questions too!  It was also really cool and a little freaky but in an awesome way to see someone sit the same way I do, with our backs leaning towards the right and our hips twisting - and I noticed our fingers move the same way too. I also appreciated being able to ask some questions about how she and her team decided on her tobbii dynavox eye gaze communication system. ​Once I got home I also became friends with her mom on Facebook and I’m sure video chatting is in our future, and I also sent her teacher copies of The Year of the Buttered Cat by Susan Haas (with Lexi Haas) and Roll with It by Jamie Sumner.

On Monday November 1st, I gave a presentation virtually on zoom to Dr. Sullivan's and Dr. Wright's classes at Holy Family University. Dr. Sullivan and Dr. Wright asked me to speak about my transition planning process and transition process from high school to college, which could very well be a whole post by itself. I will be totally honest this was the hardest of the three presentations to prepare for, I really had no idea what exactly they were looking for, but ironically this presentation went beyond fabulous much better than the previous one for Dr. Arango’s class and I really connected with my audience and they asked many wonderful questions, such as would I ever write and publish a book since I like reading and writing so much and if I would ever want to plan another 5K walk.
My key points in this presentation were:

• Transitioning from high school to college was a lonely process.  I no longer had a group that knew me and team support.
• There seems to be more supports for students with intellectual disabilities and or autism, but not as much for students with physical disabilities, who have average or above average intellectual ability. Some colleges have programs specifically for these students giving them the much needed support to succeed. 
• Colleges do not have to identify students with disabilities nor is a student obligated to inform the school. 
• If you want or need help, then you must request help; no one will come to find you. You have to reach out to the office of disability services.You have to understand your disability and know your strengths and weaknesses, be able to explain where you have had difficulty and what has helped and what specific adjustment might work now.   
• The keys to success are attitude, self advocacy and preparation. I would encourage young adults with disabilities entering into adulthood to be engaged in the process, ask questions, and remember everyone involved is there to support YOU!

I am looking forward to Christmas and the return of This Is Us in early January. I will continue periodically updating my website when typing allows.

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