Friday, July 29, 2016

MAKE MY DAY: Ask a question!

HI everybody!! :) I am still reveling in the amazingness of being able to stand/take steps pain-free. Every now and again I just have to pause and confirm to myself that this is REAL. I have some posts in the works and I plan to talk in more detail about my recovery soon....It is going pretty smoothly, and I even got to leave the house a few times!!! My mom and I went to Panera Bread and then WE WENT TO A CRAFT STORE (we love craft stores) and we had SO much fun -- we both have a "thing" for pretty scrapbooking paper and I think we could have stayed there foreverrrr :)

This is little me hoping you've got questions :)
In case you're wondering, the knee-pads are
because I got around by crawling
and I kept banging up my knees! ;)
(an occupational hazard of CP)
ALSO - I wanted to reach out to you (yes, you!) and ask if you have any questions about cerebral palsy or disability in general.

Tonia (from Tonia Says) and (maybe-probably?) her twin sister Tara, and I are planning on doing a CP-panel type thing in which we answer a bunch of questions in an upcoming post, and we would LOVE to have your input, whether you are a person with a disability, a parent of a child who has a disability, or if you don't have a disability at all and you've got something you're wondering about!

So if you do have a question (and I really hope you do!), please either comment down below or if you'd prefer, write to me at transcendingcp@gmail.com :) It would make my day! We will keep all questions anonymous. Our hope is that this panel will be a useful resource for everybody - for people with CP/other disabilities, for their parents, and for people who are simply curious and would like to learn more about life with disability.

My goal for this blog is simple: to help. When I was growing up, there were many times I had questions about my CP and I felt as though I had nowhere to turn, nobody who knew just what it was like. If I can be a guide for one person - if, because of this blog and because of this panel, there is one person who feels less alone - then it is all worth it.

P.S. Don't mind the end of this post...I'm testing out a nifty (show answer) functionality and I'm not sure if it's going to break things or not. ;) My brother has his degree in computer science, so he'd probably be laughing right now if he saw my ridiculous attempt at implementing code (side note: a few years ago, he created a server on his computer that rigged the blinds in his bedroom so that they went up every day at 8 am and down every night at 8 pm. He didn't tell me this at first, so I'll let you imagine the sheer terror I felt when he was sleeping over at a friend's house and I walked by his room at 8 pm and witnessed his blinds going down all by themselves).

Thanks for reading :) You guys are the best!!

How do I submit a question to be anonymously addressed in the CP/disability panel?
Show Answer

Write your question in a comment below -OR- send it to me via transcendingcp@gmail.com :)

13 comments:

  1. Hi! I'm a college student with CP, and I think it's great that you're doing this panel. I have a few questions for you (although you don't have to answer any/all of them if you don't want to):

    1. What has been your experience (if any) with CP and medical care as an adult? Are you able to find doctors who specialize in CP? (Just asking because I feel like you kind of drop off the face of the earth when you turn 18 and age out of the pediatric system)
    2. Have you ever tried any kind of adaptive sports?
    3. How did you feel about doing PT when you were younger?
    4. Do you feel like your CP has gotten "worse" or harder to deal with as you've gotten older? (I know CP is technically a static condition, but I'm just curious about others' experiences)
    5. What (if anything) do you like about having CP?

    ReplyDelete
    Replies
    1. Awesome questions, Natalie!!! Thank you so much! We are so excited to address them <3

      Delete
  2. My questions are: What was the most challenging part of college as someone with a disability? Have you found having a disability makes romantic relationships or finding people to have those relationships with more difficult?

    ReplyDelete
    Replies
    1. Thank you Kathryn!! Great questions - we have added these to our list. :)

      Delete
  3. What advice do have for college/university students with CP?


    Zahraa

    ReplyDelete
    Replies
    1. Zahraa! <3 I love this question, thank you!!

      Delete
  4. How do you think your temperament and other personality types influence the way your disability experiences? You can use LaHaye blends, APS, MBTI, the Big Five, enneagram, or any personality type system you can think of to answer my question. I encourage the use of multiple systems.

    ReplyDelete
    Replies
    1. Wow, what a thought-provoking question! Thank you Anna! We've added it to our list. :)

      Delete
  5. Hey K, I think you're fabulous for doing this, and for doing everything in your power to break down stigma and encourage understanding.

    GOOD FOR YOU! Is there any way I can support you/this panel event?

    ReplyDelete
    Replies
    1. Lizzi - Thank you!! That's such an amazing compliment, coming from someone as fabulous as YOU!

      And thank you for asking!! If you know of anybody who might benefit from this panel, I'd really, really appreciate it if you'd point them in this direction! <3 We haven't set a date for the post, but we will soooon!

      Thanks for all your support!

      Delete
    2. Have you sent it to Kristi as a suggestion for being featured on her Break the Parenting Mold site? I bet any parents of kids with CP would be stoked to be able to read a Q&A from adults with CP...might help them loads!

      Delete
  6. As a person with mild hemiplegic cp, I feel I don't quite fit in anywhere. Able-bodied people consider me disabled, but I don't really feel like I'm disabled. I was wondering if Tonya's sister has any thoughts, as it sounds like she has mild cp as well?

    ReplyDelete
    Replies
    1. Hiii! Awesome question, thank you! I passed it on to Tara! :)

      Delete

Please feel free to leave a comment. I would love to hear from you. Thanks! :-)