Wednesday, August 10, 2011

Hi, Do you have CP? Can we talk about it?

Through our various therapies, support groups, etc, we know several children with varying degrees of cerebral palsy.  All an inspiration.  However, we don't know, personally know, any adults with cerebral palsy.  I often think about how Grace will be when she grows up and how I have no real personal idea...no one I can call and ask "so what is it like to be an adult with CP?".

About a month ago, me and the kids were at the library, Grace walking with her walker.  As we were leaving a man walks up to us.  From the his unusual gait, I assumed he had cerebral palsy.

Man:  Hi!  "Does she have cerebral palsy?" (Points at Grace)
Me: "Yes, she does."  (Trying to guide her out the door and up the ramp)
Man:  "She looks great!  Don't let anyone ever tell you she can't do anything."  (his speech affected by CP)
Me:  "Thanks so much!  We won't." (a little distracted by Sophia questioning his unusual speech...that is a discussion for later)

He then walks to his car parked next to ours in handicapped parking, gets in, and drives off.  I was so touched that he would stop and talk with us.  It felt kind of like I had gotten a pat on the back and an "everything will be okay".

If I didn't have my three with me (and again Sophia questions), I probably would have ran after him and asked if I could buy him a coffee and pick his brain.  Hopefully next time I will be better prepared.

Yesterday while at the grocery store, looking for an open register, a woman waved me over saying "Ma'am, I can get you right here."  She then turned to walk to the register.  There it was...the unusual gait!  Did she have cerebral palsy?  Can I ask her about?  Will she be offended?  I stood there very conflicted about what to do as she ran my grocery items across the scanner.  I didn't ask.  I was too afraid.  Of what...what would she say...would she want to talk with me about it?  Will Grace get those questions...or just looks of sympathy or even disgust at times.

Maybe I'll get another chance.  What should I do?  What would you do?


12 comments:

Josephine said...

I'm the same way! I'm always so excited when I see someone who I think has CP because I love to talk to people who might have similar experiences, but I always hesitate and wonder whether it would bother them if I brought it up. I know I LOVE when people seek us out to ask/talk about it, but I know not everyone is the same, so I never know whether to talk to people or not.

Anonymous said...

Hello, My name is Lauren. I just stumbled upon your blog from another one when I was doing research for work. I hope you don't mind, but I guess you could say, I'm a blog lurker.

Ionight, I couldn't help but comment. I am 28 years old with spastic quad CP. I am a wheelchair user who holds my Masters degree and works as a speech-language pathologist.

I can't say I know what it's like to be a parent of a kid with CP because I do not, but I understand what it's like to HAVE CP. Personally, I like to talk about my story. I can't hide my CP. It is as much a part of me and has shaped who I am and the life I lead as my parents and my education has shaped me. I don't really talk to my parents about CP often. I hope you don't mind, but I'm glad you blog. I like to try and understand a parents' perspective, to understand what my own parents went through and also to understand the perspectives of the parents of the kids I treat. As a professional, I owe it to the parents I work with to separate my own feelings/experiences from the work I do with kids, but I do use my experiences to try to understand.

I am generally not a blog commenter. It scares me that the world can read my words, but personally I'm open to talk.

Lisa said...

Hi! I just found your blog tonight :). I am married to a wonderful man who has cp. He has spastic diplegia and walks with a walker. He doesn't mind being asked about it all - it ia a big part of his life (and our lives together). He/we especially like to talk to parents of kids with cp to be a source of encouragement and support! And we answer a lot of questons from curious kids about why he "walks like that." My hubby is a graphic designer working on his masters degree. We enjoy camping and biking. One of the things we wish we had more people to talk about are the modifications and tips/tricks to make everyday life with physical limitations "work."

J said...

Hi,

My name is Jessica and I am an adult with Spastic Diplegia CP. If you have questions or something, I'd be more than happy to discuss

http//www.illjustkeeprollingon.blogspot.com

Anonymous said...

Hi,
I am 27 years old and have CP- Spastic Diplegia. I love being able to explain things about my life. Personally when I see a child with with a disability. I will compliment the child thereby engaging the parent. I talk first to the child because I know what's like to be talked over. I would rather people ask questions.
Hope I helped,
D

An INFJ with CP said...

This post drew me in for 2 reasons. The first being that I have cerebral palsy and the second is that I am a cashier at a grocery store :). I wouldn't mind if you asked me questions. The only problem I have, is that because I scan stuff sitting, people sometimes think I am just sitting in a chair when actually it's a walker, and so they try to make a joke. So I don't like that, but as a person who loves to give people hope in general, because life is hard, I would be happy to talk with a parent or anyone else wanting to be educated.

Anonymous said...

HI I JUST FOUND YOUR BLOG.. I HAVE THE SAME TYPE OF CP AS YOUR LAST THREE COMMENTATORS.. I DON'T MIND IF SOMEONE ASKS A QUTION BUT IF THEY ARE RUDE ABOUT IT THEN I MIND..

I TOO USE A WHEELCHAIR AND FOREARM CRUTCHES.. I HAVE RECENTLY HAD SOME NOT SO POSSITIVE EXPERIENCES.. MEANING THAT I AM FINSING THAT PEOPLE DON'T ALWAYS WANT TO GIVE YOU A CHANCE WJEM TELL THEM YOU HAVE MOBILY ISSUES OR SOMETIME THEY TREAT YOU AS THOUGH YOU ARE MENTALLY CHALLENED (EVEM THOUGH YOUR NOT)

Jacolyn said...

Thanks so much for the comments!! Please email me at jlieck@sbcglobal.net so we can "chat" I have so many questions.

Missy said...

I have to say I feel totally the same way as well. I get excited and inspired when I see others with CP. Its like I get to see into the future and what my little girl's life might be like.
I have resisted the urge sometimes to "run" after someone that I desperately want to bombard with questions!!

Anonymous said...

Hi there! I just stumbled across your blog and read some of your posts. You write very well and the topics brought tears to my eyes. I have 16 month triplets who each have cerebral palsy. Our daughter Grace walked at 14.5 or 12 months adjusted and our identical sons were a closer to 15.5 and 16 months. I often see someone with a different gait or that appears to have CP. I never say anything, but want to ask questions. I also get that it is exhausting and most people don't understand or appreciate what you have to do daily to help your daughter. What struck me the most about your blog is the profound love for your daughter is so evident. Thanks for some morning inspiration. Lisa
smalltott@aol.com

Judy K said...

not sure how old this post is...so i may b way off base...but as a mom of triplets 2 w/CP...and a background in PT...SPEAK...always speak up...my philosphy has been if u dont speak..u dont know...knowledge is power!! And those who have a visible disability are most usually very receptive to normal inquisitiveness and will give u the time...(if they have it) to enlighten you any way they can..

Kelly~ Wave of Life Surf Studio said...

Hi There! I love your blog! I have a 4year old son with spastic CP. We have scheduled PERCS surgery for him. Could you email me and let me know your experience??? Thanks so much! Kelly347@yahoo.com