Cerebral Palsy

[livingwith]

I have always wanted to tell my story, to some one who would really listen. To have them gain some understanding of my life or hope for their own. My life growing up wasn’t easy, in fact it was anything but. Since birth I have been told that I will never be normal, and never be able to do normal things, like ride a bike, or roller skate. Basically be a normal kid. All I have ever wanted is a chance to prove them wrong, and for some one to honestly believe in me. Anywhere from after school ...Read the full article

[proudmom]

Hi, Ashley. I was just doing some research and came across your story. You should be very proud of yourself for the person you have become. I'm sure your health issues have indeed made you a stronger person. I know that people can be very cruel and say things to others, especially to young people, that are so hurtful. Thank God you persevered. Don't ever let anyone tell you that there is anything you can't do or let anyone make you feel bad about yourself or your circumstances. God has a beautiful plan for you - even if it is just to touch someone else's life ever so briefly like you have mine. Thank you for posting your story and for being so strong and compassionate. God bless you.

[haley]

I have enjoyed your story I am so glad that you were able to beleive in yourself and kept on trying even though everone esle was telling you that you couldn't. I am doing some studies because my niece had a baby Sept 20 and the doctors are telling that she will never walk or talk and we are praying that they are wrong just as they were wrong about you. Do you have any advice for us ! I know that the Lord will help us though this just as He has you. My prayers are with you!I pray that are able to do normal things like roller skates, but I know if you beleive in yourself you will surceed.
thank God for your story!!!

[Marie_Caitlin_1990]

Your story is really an inspiration.... I am 18 and I have Cerebral Palsy and reading your story made me think about a lot of things that I have actually been through in my life and how people treat, look and act around me I can't stand it. It makes me feel like a freak sometimes because people really do treat us really horrible it's awful because they think we are so different when the reality of it is that we are just like everyone else. I really loved your story it was incredible.

[blueangel128]

Ashley,
I found your story both sad and inspiring. I'm sorry that your parents weren't more supportive of you. I hope I'm doing ok with how I've handled my daughter and her CP so far. Sadie was born at 26 1/2 weeks or about 3 months early just like you. She weighed 1 lb., 7 1/2 oz. and was 12" long. She is a tough little bird. She was born early because I was sick. By all rights, neither one of us is supposed to be alive.

Sadie was diagnosed with mild cp, she toe walks, has a scissor gait, was diagnosed with failure to thrive, and I believe has a problem with depth perception. She falls easily and still can't ride a bike without training wheels (I'm hoping to surprise her this summer with a low to the ground 3 wheel bike that is a totally cool hot pink color). She has some developmental delays and learning disabilities , and now I'm looking into getting her checked for ADD. We had to start signing with her when she was 3 years old because she couldn't talk, (now you can't shut her up...) She finally started walking when she was about 2 1/2 years old. She's had physical and occupational therapy almost her entire life. We just discontinued occupational this year and physical last year. She wears dolfo braces for daily wear and we also have sleep splints. We are in the process of getting new braces this month and I'm afraid they'll have to go to her knees because she still finds ways to toe walk in the short braces. She needs surgery for reflux of her kidney. We had a non invasive surgery done for her last year, but it didn't take so now we have to do the more invasive one...

Through all of this, I tend to forget that Sadie is "special" in a handicapped way. We encourage her and "I can't" isn't allowed in her vocabulary. She knows she "different" because she is so small and many things are harder for her to do than other kids her age. She is 9 years old and weighs 42 lbs. She gets knocked down at school alot just because she's so light. She gets mad because the other kids tease her sometimes about being small. She wants to know why she is so small and I just tell her it's because thats how God made her. He made her special for a reason, we just don't know all the reasons why. When she was younger and she asked I told her He made her small so that I could still pick her up and take care of her. I was on dialysis and wasn't allowed to lift over 15 lbs., at a year old she weighed about 8 ibs and 0 - 3 months clothing was still too big, and I could still hold her in my arms.

Sadie is a miracle baby, as are you. I guess the difference is that I didn't want to hear anything negative from the doctors so if they said anything, I blocked it out. Her doctors were always pretty positive from what I remember, I was a high risk pregnancy and the kidney doctors wanted me to abort her, the high risk baby doctors were estatic when I refused. I never doubted that she would come home from the NICU. A little bit of faith in God goes a long way. I didn't read the NICU handbook that they gave me when she was in the hospital, in fact I didn't read it for a couple of years. I'm glad I didn't too. I finally read it here a couple years ago and the statistics stacked against her (50 % chance of survival???? and all kinds of developmental problems...)were overwhelming. I said a prayer of thanks and had a good laugh at myself.
Had I known the things in that book, I probably would have treated her like she was glass and not had a lot of high expectations from her. I am still very overprotective of her because I am fully aware of what her limitations are, I just don't always let her know what they are.

When people tell you negative things, like she may never walk, it's hard to expect your child to walk and some people probably wouldn't even push the issue to try. My philosophy with her is "don't tell me what she can't do, cause I'm not going to encourage her to fail, I'm going to let her shoot for the stars. Right now when she grows up she want's to be an artist and a mom. Right now, that's just fine with me!

I am so proud of all that Sadie has accomplished. And I have high expectations for her. I also feel so blessed that I got to be her mom. I secretly think she's just a little bit angel because she has a way of touching people. Most people who get to meet her don't forget her. And she brings alot of joy to a lot of people.

I am so proud of you for overcoming everything that you have! That means alot considering your lack of support. We've ran into a "bad" teacher this year who thinks that I'm babying Sadie and doesn't believe that Sadie has a lot of learning disabilities. I believe from some of the remarks she's made that she just thinks that Sadie is lazy and not trying. I'm having Sadie re-evaluated at a place who's sole goal is to HELP kids who have special needs adapt into the regular class room and help them when they need it. I'm not letting a stupid lazy teacher completely ruin and waste a year of my kids life.(sorry to all you good teachers out there that do actually care). Keep up the good work. It's really awsome to hear from another micro-preemie that you can do it and cp isn't holding you back!
Melissa aka Sadie's mom

[ashleyschlicher]

I am only 19, so my life experiences arnt much. however, since i do have this disabilty i can relate to the fear. the only advice i can give you, is to stay strong and to be very honest and open with your niece. never tell her she cant do something, but give her options instead. for instance, if she wants to learn how to ride a bike but needs training wheels when all of her friends are riding with out. and she comes to you, wondering why she cant take hers off. let her know, that she WILL learn how but for some people it just takes longer to learn. ensure her that every one is uncoodinated at some point and no one is perfect. be willing to listen and be a support for her. especially if she gets picked on. give her options of when you would be willing to give her lessons or maybe instead of the bike offer a different type of activity that she would be able to particate in with her friends as well as her own time. as she grows older, the doubts and insercurties will only get worse. just keep reminding her that God created every one in a different way, so that way we can learn and grow from each other. I hope this helps?
and if you ever have any questions or concerns

email me at [moderator note: e-mail address has been removed]