Monday, April 14, 2014

Let's Talk About CP

I didn't think things were different than usual.  Things were normal.  Well, normal for us.  But one day Theresa (our PT since E was 8 months old) said that she thought it would be a good idea to talk about Elena's cerebral palsy more often.  

I mean, it's not a secret.  We know it, she knows it, but...we don't mention it often.  Quite frankly, I didn't want to bring it up unnecessarily because I was worried Elena would use her condition as an excuse for things, which is something we just don't do.  But Theresa was persistent.  She thought it would be beneficial for us to "bring cerebral palsy up as often as possible".  

In her view, she thought it would help Elena understand why her body moves the way it does.  I thought it would give her a reason not to try as hard.  Theresa also said that by making it part of our everyday conversation, as often as possible, as easy as possible, would help Elena open up--to lots of people in her life--about living with CP.  Maybe not now, but maybe later, when communication might become more difficult.  

Elena and I communicate pretty well right now.  But I definitely welcome any advice that might help us understand each other as we get older.  

I spoke to Jason about it, and we both immediately got on board.  We started talking about it more often.  Peppering it into conversation, using it to describe why she is tight, or why breaks on road trips are really important.  Or why we want her hands to feel comfortable on her crutches, or why exercise and proper seating are important, or why her testing is different than her classmates.  

You know what?  It's been great.  A really, really great piece of advice.  I haven't experienced a lot of Elena instigating conversations about cerebral palsy, but I feel like they will come easier with this new approach.  She seems...more at ease, in a way, as if she knows I will be a better listening ear.  

If you have cerebral palsy, did your parents/caregiver/therapist do this?  What age?

9 comments:

Anonymous said...

To be honest, my parents never really talked about my CP when I was growing up. It wasn't like it was taboo or anything- like you said, I knew and my parents and siblings and friends knew that I had it- but it just didn't come up very often. I think it was just easier that way, because I didn't want to make other people feel uncomfortable.

In some ways, I wish my parents had brought it up more often so I would have known it was okay to talk about. Now that I'm in college, I still never bring it up with people unless they ask, and because of that, I often have a hard time opening up to people and I feel lonely and isolated from my friends sometimes. At the same time, though, not talking about it also ensured that I knew I was held to the same standards as everyone else, and I never felt like my disability held me back from anything. I wasn't constantly reminded that I was disabled all the time, which was nice.

The individual decision is yours, of course, but talking about CP can have both pros and cons.

K said...

Exactly what Anon said -- my parents didn't bring it up often either, and I'm sort of conflicted about that now. On one hand, by not mentioning it often, I didn't feel "disabled" in any way, and I was held to the same expectations as my brothers (within reason). I do wish that they talked about it a little bit more when I was growing up, though, because I always felt awkward mentioning it to my parents if I was concerned about something related to my CP, and even today I feel a little odd referencing it when I talk with my friends and family. Also, I remember overhearing teachers whispering about my CP, and that made me feel as though it was something to be ashamed of.

The key is moderation! I think it's a great idea to bring it up with Elena every now and then, especially if she seems eager/interested in talking about it, but there's a delicate balance between bringing it up too often so that it becomes an excuse and not bringing it up enough so she feels awkward/ashamed about her condition. Finding that balance can be difficult sometimes!

Best of luck!

Anonymous said...

HI AMY MY PARENTS NEVER REALLY BROUGHT IT UP EITHER..I ALSO DID NOT GET HELP WITH STRETCHING LIKE YOU DO FOR ELENA.. EXECRISE WAS NOT AS ENCOURAGED... I WAS LEFT ON MY OWN TO DO WHAT PHYSIO WAS ASKING THAT COULD ALSO BE WHY I AM NOT MOTOVATED NOW TO DO IT..

WHEN I WAS VOLUNTEERING I WAS UNCOMFORTABLE TAKING TO THE STUDENTS ABOUT IT AND WGAT TO SAY SO THE TEACHER HELPED ME.

EVEN NOW WHEN A KID SAYS SOMETHING NOT NICE I DONT KNOW HOW TO DEAL WITH IT

MELISSA

Anonymous said...

My parents bought up my CP started when I was 4 so I would know how to explain it to others and it was a huge help. When I was bullied one year I figured out how to shut the bullies down. But my only concept of it was that I was tight. I wasn't sure what my limits were. When I hit puberty I finally met someone with Cerebral Palsy and I realized I was "disabled" rather than just someone who was tight and moved slow. One of my PTs puts the whole CP thing this way. "Have knowledge of it so you can know how to work with it/around it but keep moving forward" I think the reason your PT is bringing this up to you is because she is a good PT and wants Elena to understand her body so she can eventually learn how to anticipate when the CP will cause her body to react in a way she doesn't want and work through it. But you are also doing the right thing by not wanting the CP to be an excuse because using it as an excuse is not good. It is indeed a balance. You need to encourage her to be curious and loving towards her body while giving her the confidence to not use it as an excuse. That's what my PT means by "keep moving forward" Let Elena feel comfortable talking to you so she feels having CP is an okay way to be and that it should not be ignored but also not obsessed over.

Danielle said...

I don't think my parents ever made any type of conscious choice to talk about CP more, but as I got older being "a person with disability" became more a part of my identity (in the most positive sense- looking other people to be role models etc.) And as that happened in my teens, I needed to talk about it more.

Acknowledging it more was good for me. Being really firm in the understanding that I NEEDED testing accommodations because of my impairment, was actually good for my self-worth because it allowed me to stop thinking that if I only tried harder I'd be able to do things as speedily as every one else.

I think all parents raising a child with CP would help themselves along by learning about the disability rights movement and the social model of disability, even a little. I think if parents did that they'd be more comfortable thinking about disability as a part of who their child is, and not just a set of medical realities.

But I don't think you can create total understanding between you, particularly not in young adulthood. Elena lives in the body, whereas you support and guide her. Those are hugely different experiences,

Richard Saint said...
This comment has been removed by the author.
Richard Saint said...

Hi Amy,

Sorry to bring it up here, but I couldn't find any contact details on your blog and I wanted to make you a proposition, if you'd be willing to hear it. I'm currently putting together a large piece of content due for completion this month which will center on traumatic births and birth injury, detailing the sheer prevalence of birth complications and the wide variety of issues which can occur, as many mothers are unaware.

The hope is that I can convince mothers that they are not alone in facing these problems, that support is out there, and that the law can provide financial aid in some instances.

To have a quote from a mother like yourself who is raising a child with CP would be invaluable, I'm sure, and I would be happy to link to your site as a resource for other mums who may be in your position. If you'd like more details, and perhaps to read over my first draft, I could happily provide them via e-mail.

Thanks Amy,

Richard

Anonymous said...

My family refused to talk about my disability (not CP but I do have mobility issues) because they thought that the only reason I would bring it up was to make an excuse or complain it wasn't fair. I thought for a long time that the reason I couldn't move like everyone else was that I was stupid. I thought that no one else needed to have classes to learn to walk around because they were smart enough to figure it out on their own. That wasn't what my parents wanted me to think but that's what happened.

I can't tell you how much better it is to know that you're having problems for a reason. To have it acknowledged that some things will be harder for you. To be able to put a set of words to your problems. To be celebrated when you do something that was really hard for you even when others around you can do the same thing without thinking about it.

Beyond the self esteem part, it helped a lot with problem solving. I could identify the specific problem I was having instead of just knowing I couldn't do something.

It makes things a lot easier.

Anonymous said...

HI AMY I WAS NOT SURE WHERE TO POST THIS BUT I WOULD LIKE TO GET FEEDBACK FROM YOURSELF AND OTHER READERS. I WAS HAVING BOTOX BUT DECIDED TO STOP BECAUSE I WAS ONLY GETTING 3 TO 4 WEEKS OUT OF IT.

ITS BEEN ABOUT A YEAR AND THREE MONTHS AND NOW THEY ARE PUSHING THAT AGAIN BECAUSE OF THE POSITION OF MY RIGHT FOOT AND ANKLE. THE RIGHT FOOT TURNING IN MAKING ANKLE POSITION BAD.

BACKOLFIN I DONT I THINK I SPELT THAT RIGHT WAS SUGGUSTED AND I REFUED DUE TO OTHER ISSSUES. I AM SURE YOU KNOW WHAT I MEAN.

I AM TERRIFIED OF NEEDLES. I GO A WEEK TOMORROW.

PLEASE POST THOUGHTS SUGGESTIONS I WOULD REALLY APPRECIATE IT THANK YOU

MELISSA