Wednesday, January 21, 2009

7 Questions For...an adult with disabilities


Meet Kara Udziela, a 39-year-old mother of two who runs her own successful public relations agency, Vibrance PR. Kara has cerebral palsy. She talks just fine, she's super-smart and she's funny. I hope you find her as inspirational as I did. Kara's happy to answer any questions you may have, so fire away in the comments!

How old were you when you were diagnosed with cerebral palsy?
Around one years old. I failed to walk and dragged the right side of my body when crawling. I have spastic cerebral palsy, which affects my entire right side. I walk with a pronounced limp and have a very stiff right arm that is pretty much useless except as an anchor for grasping things the left one's holding.

What prognosis were your parents given?
They were not given much of a prognosis, just a series of doctors and hospitals trying to do various surgeries and therapies to improve my walking. One doctor mistakenly cut the wrong tendon in my right calf when I was five, leaving me with no calf muscles and a withered leg. Several operations were done to compensate for that.

Growing up, which therapy was most helpful to you, and why?
I had it all except for speech. What I think should be given to all disabled kids—especially when they hit 1st and 2nd grade and when they are teens—are self-esteem classes, psychological counseling if possible, and exposure and interviews with grown-ups who have similar problems to them. I did not have this, and spent a lot of my twenties not dating—I assumed because of my CP. When I was 28, my final single girlfriend was getting married and I broke down in front of her. She suggested a counselor she knew. I went and said, "I am disabled, but haven't let that define me. I have a good job, an M.A., a house, and friends, but I would like to be married, but A, I think I secretly think I am not worthy of love despite all my parents have tried to do, and B, if I can never be married, can you at least help me to be happy without that?" This counselor was the perfect fit for me. Within months I was reacting differently when people asked me why I was limping or tried to help me with things. Within a year I was dating, a lot—and believe me, even without cerebral palsy, I would not be classified as anything other than mildly pretty. So that had to come from my attitude.


Kara with her husband, Chris, and Lex, now 1

Actually, you're very pretty! So how'd you two meet?
We were both at an Oregon hippie/yuppie retreat at a hot springs. We had to walk a ways through trees and such to get to the springs and all my friends blew me off. I could never have done it alone. I turned to Chris—he was a friend of a friend—and said, "I don't know you, but I can't get there by myself. Will you walk with me and hold my hand?" He did, and he half-carried me over boulders and rocks and held my hand tight at rough patches and we talked the whole way there and back. Three months later, I fell down stairs and hurt myself. I thought he would leave. My mom said, "This is his test." He didn't leave. He picked me up and pushed my wheelchair and nursed me. And when it happened again six months later, he said that he loved my soul and my spirit and that he was going to marry me. We have been married for seven years.

What's been the biggest challenge for you?
I still to this day have problems with the stares people give you, and I hate watching myself on video, but that is only because in my head I look and act and walk and move the exact same way as you do.

Got any favorite websites?
TUT.com. Thoughts beome things, choose the good ones. Hokey spiritual The Secret kind of stuff, but the daily e-mails pump me up.

What's the most important advice you'd give to a parent of a special-needs child?
First, be vigilant of your child's health and care—trust no one completely. Always check doctors' credentials and history and get at least three opinions on surgeries or treatments suggested for your child even if it is a doctor you have known a long time. Second, do not discourage your kids AT ALL. Just because you don't think he can be a veterinarian based on his physicality doesn't mean he can't find a way. And, last, a positive attitude really is a priceless tool.


Kara with Liam, 4

19 comments:

  1. Thank you for sharing. What an amazing and inspirational woman!

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  2. She sounds just like Darsie. SO WONDERFUL! I know my girly can do anything she wants but this is fanastic. I would have never thought about the self-esteem classes/counseling.

    THANK YOU, THANK YOU, THANK YOU!

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  3. Ellen,
    Thanks so much for this! That amazing woman is what I think and hope Daniel will be like 30 years from now. These are the kinds of stories parents like us need to hear to give us hope. I'm also going to take her advice and start looking for a child psychologist for Daniel. He seems to be well adjusted among his peers, but he's started making comments about how some things are harder for him than his friends. We try our best to explain things to him, but now I'm convinced that a professional may be very helpful. Again, thank you so much - you always have such great posts!

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  4. Hi,

    Ellen asked me to post to you and tell you that yes, I believe I am what is called right-hemisphere...whatever it is my right side from head to toe is a mess.

    Anyone who has a young teen or preteen daughter can save my e-mail until it is needed or until she doesn't get asked to the prom and have her talk with me ok...It really does get ok, but high school is hard. kara@vibrancepr.com

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  5. I've known Kara for years. It is hard to believe she ever had a self confidence issue OR had problems in talking with people about her disability or accepting help.

    Quite the contrary -- she does a lot to get people comfortable with talking with her about any physical limitations when the discussion comes up (and, realistically, if you spend any time with someone with a disability it is going to come up).

    By rolling with the punches, accepting help (or asking for help as needed) rather than being confrontational, acting like she's got something to prove or it is her against the world it lets people see past any disability very quickly.

    I can't imagine that she hasn't possessed all these skills from birth.

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  6. This is inspirational Kara. I remember we'd been speaking professionally for over a year before we met, and it was only then when I innocently asked if you were limping that I discovered you had CP. It's great that you're bigger than your disability, and I love your work.

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  7. THANK YOU FOR THIS!!!! I must have read it 4 times, I was so glad to see it!

    You rock.

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  8. Kara, thanks for sharing your thoughts, and Ellen, thanks for posting this!

    While my son is much more involved, I still find this insight invaluable.

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  9. Oh, Wow! How great. There's a teen with CP that posts comments on my blog. I'm not sure how she found me. I added her link on mine (I didn't ask, so I won't post hers here). It really puts my mommy frustrations in a new perspective to read her entries.

    * Logen uses a Vanguard. We chose that one b/c of the unity language. It's a pretty neat device, very complex. I took a 6 hour training on it and am still learning!

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  10. Super-wonderful article! I'm going to sound totally corny, but just think--she can do all this and that was like three decades ago--there are so many more interventions available now. There's no telling what our kids will do.

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  11. Thank you for this! She makes me think of Piper and what we want for her. We actually had one of those conversations last week. Its nice to be reminded they still need the encouragement and help even when they appear to have "overcome" their physical limitations. Kara's is a wonderful story that I can see Piper in!!

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  12. Thank you for sharing. Whenever I see anyone that appears to have CP I always wish I could stop them and ask questions - of course I never would.

    What an amazing woman. I am so grateful that she has shared her experience. She has some great advice.

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  13. I loved this post. My husband of 11 years has CP. We have two beautiful children. He is a lawyer. He lives a very full life.

    I am so glad to see another adult sharing her feelings. It wasn't easy for him to see himself as married or even dating before we met. After the second week of dating he asked me if his walking "funny" bothered me. I answered "No does it bother you?" He said no and that was the end of it for us. Sure we have a few physical struggles but they work themselves out.

    He loves to answer kid's questions about his CP. You give them the basics and they take it for what it is.

    I want to tell parents of kids with CP "Look at my husband. 44 years ago he wasn't supposed to live through the night. Now he has a better life than most men with nothing standing in their way. Your kids can too."

    I found your blog from A Cup of Jo http://joannagoddard.blogspot.com/. I sure am glad I did.

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  14. What a wonderful post and please thank Kara for sharing her time and insights.

    The story of how she found love is beautiful and her advice is very sage and affirming, especially about the self-esteem classes. I think I'd like to start reading up on that early on ;-).

    I often think about the importance of role models for our kids. I really hope that we are becoming a more accepting society and that we'll see more people in high profile positions with disabilities, and for the disability to not be an issue, just a fact.

    Thanks again to both of you, Ellen and Kara!

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  15. I love this - I had to re-read - only because I loved the part where she met her mate. What a breath of fresh air. Although I have no true disabilities - I do often let my mind get the better of me and must now remind myself of this fine person and her positive esteemed life. She totally rocks.

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  16. Do you know how it would be possible to get in touch with this amazing woman? Even just a quick email. Id love to let her know what an inspiring and BEAUTIFUL woman i think she is.

    Let me know! you can drop me a line at
    malinda.lewis.m2ms@statefarm.com

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  17. Malinda, I will pass along your email to Kara!

    Ellen

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  18. This was an incredible interview. Thank you. I have a 6 year old daughter with CP and have followed the philosophy of not telling my daughter she has any limitations. She is in kindergarten this year and doing better then I ever though she could at this stage. I was lucky enough to grow up with a good friend who had CP and he is a lawyer toady. There are no limitations to someone who wants to find a way. My daughter runs, jumps, and writes. She wants to so she can. They are all her variations but she does them all.

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Thanks for sharing!