Hello, guest
|
Name: crackers
[ Original Post ]
Your Name


captcha

Your Reply here


 
Name: Jane | Date: Apr 14th, 2009 3:54 AM
I've never written into a group like this before. Anybody out there that has had a diagnosis of CP late into the teen years. Our daughter was diagnosed at 16. She now is having more problems, which is confusing to us because we'd been told that it wouldn't get worse. Everything I find is about younger children. Looking back at several situations gave us the diagnosis, and now things are changing. 

Name: kezia jacobsen | Date: Apr 20th, 2009 6:20 PM
Hello,
I have a son who ia 13 with mild cerebral palsy and your story of your daughter is very similar to his. Nick had an operation in Barcelona when he was 10 on his left leg and he now walks very well, but when he is tired or when he runs it is much more noticible. He has problems finding friends, although everyone likes him he often ias not included in social school things and is desperate for a "best friend" and doesn,t understand why other boys do not waqnt to spend time with him out of school. Has anyone experienced the same with thier child?? 

Name: kezia | Date: Apr 20th, 2009 6:28 PM
My son had surgery in a hospital in Barcelona and it has really helped him to walk with very little limp and he no longer wears a day or night splint. hHe has mild CP and had his op when he was 10, until then he wore a day and night splint , had physio at least 3-4 times a week as well as other therapies. He now is 13 and the improvment has been amazing!!! 

Name: kezia | Date: Apr 20th, 2009 6:32 PM
Dear crackers,
I wrote something for you but forgot to put your name. My son is 13 and we can totally relate to your situation. Maybe we can email or the kids could - my email is [email protected] 

Name: Emily Hamm | Date: Apr 22nd, 2009 2:30 PM
i am 17 and i have mild cp 

Name: kezia | Date: Apr 28th, 2009 9:23 PM
Hi Emily,

Would you like to email my son Nick who also has mild CP. We live in Marbella, Spain. Also, I would appreciate very much to chat with you, to see if you can share your experiences during the teenage years. 


Name: KAT | Date: Apr 29th, 2009 1:47 AM
WELL im 16 and i too have mild cp and do walk with a noticable limp but what i have learned is to never get down on your self bout it all my friends kno about my cp and they all watch out for me im lucky to have them its hard beleive me i know but never take forgranted how you are you could be allot worse 

Name: Melanie Blackwell | Date: May 2nd, 2009 2:23 PM
I am 27 and have mild cp and limp on my left side. Having mild cp can be really hard to deal with especially when you look normal. So if it wasnt noticable then I would try even harder to be "Normal" (no such thing:) ) and I would hide my condition.
Crackers my mother never gave me praise for any of my "simple" (not to me) accomplishments. Learning to ride a bike was so hard for me and now that I look back that was a major accomplishment in my life. Your daughter is so blessed to have you as a mother! I never was able to talk about my condition so for years and even now sometimes I felt like I didnt fit in and alone. I think being there for your daughter and supporting her is awesome! I also think she should talk to other teens with her same struggles, it is always nice to know that you are not going through it alone. I wasted so many years of my life worrying about what other people thought of me. Mild cp did not stop me from doing the things I wanted to do. I have 4 beautiful little boys and I have traveled all over the world. The only thing that mild cp has done to me is humbled me, and that is a blessing is disguise. 

Name: susie toth | Date: May 31st, 2009 2:24 AM
i am 25 year old with mild cp so i know what your child is going through and know your frustrations first hand.
let me know what i can do to help. 

Name: Mercy | Date: May 31st, 2009 3:11 AM
I have a daughter with mild cerebral palsy, she is actually 5 years old and just had surgery to have the baclophen pump put in her stomach because of her bad spasticity in the muscle, my daughter is wheel chair bound at 5 years old :-(

As a single mother of 2 little girls is been very hard to deal with my oldest daughter disability all on my own, it's been really hard mentally and fisically to deal with the fact that I'm doing this knowing that things may never change in "our lives".

I'm scared to think of the future :-/
I don't know what I'm going to do when my daughter turns 16 and goes to school with "normal" kids. Just the fact of her being tease in school brings my eyes to tears :-(
I wouldn't know how to react to kids teasing her for being in a wheel chair and still on diapers

My daughter can't talk, walk, sit or eat on her own, she is not dependable at all, but eventhow it's not getting easier and is just gonna get harder she has a lot of people that care for her and are willing to pick her up and feeder when she needs to.

LOVE, HOPE and FAITH is my last resort ! 

Name: claire | Date: Jun 3rd, 2009 7:55 PM
hi my daughter is 3 years old and has been diagnosed with mild cerebral palsy she is also affected on her right side. Eventhough she is getting the physio i am finding it hard emotionally to deal with the diagnosis. i feel im not getting any help with the emotion of my daughter being diagnosed with this. 

Name: janet schindele | Date: Jun 13th, 2009 5:58 AM
My son is 18 has mild CP (now) after surgeries (heel cord lengthening), OT, PT & Speech. I had triplets, one died in-utereo, one lived for 10 days and my survivor had a stroke after they were born which was in the front part of his brain affecting rote memory (he has none) he can't do math, can't take the SAT or any tests like that. We were told he would never, crawl, sit-up, or walk. To look at him it is not obivious
that he has CP, He has learning disabilities and muscle spasms in his calves. He did crawl, walk, run, etc, and was accepted and is attending an acting college to become an actor. This school accepts 1 out of every 600 applicants. We have continually told him that he needs to "own" his disabilities, be proud of his accomplishments and do the best he can do. Our frustration is trying to find stars or organizations to help with college. H has the CP "grip" and has spastic feet sometimes. 

Name: lindsey | Date: Jun 17th, 2009 10:25 PM
i have it to 

Name: lindsey madden | Date: Jun 17th, 2009 10:38 PM
i am 20 yeaers old and i have mild cp it has been hard over the year for me i have trouble walk and i cant use my left arm at all and i were a braces on my left leg i have trouble with writung and i cant ride a two weel bike i am in pain a lot i go too child and career devolpment center it a speacal school i been therte seen i was frive years old they have help me a lot there 

Name: lindseylou8991 | Date: Jun 17th, 2009 10:49 PM
hi my name is lindsey i am 20 year old and i have mild cp it has been hard over the year for me i have troulbe with walk and writ and with my bance as well i have troulbe with ziping up by jack 

Name: angwoodard | Date: Jul 12th, 2009 4:36 AM
I can relate to this very well my daughter is 12 with mild cerebral palsy. 

Name: angwoodard | Date: Jul 12th, 2009 4:45 AM
My daughter is 12 years old and has mild cp if anyone would like to share info please contact us at an[email protected] ...I know these posts take a while to get answered it would just be nice to talk to someone on a more immediate basis. 

Name: Laura | Date: Jul 13th, 2009 1:29 AM
I have a son who is 11 who was diagnosed last year with "mild cerebral palsy". He walks slower than most, has very flat fees so has inserts to help put in some arch, cant really walk long distances without getting tired and without his feet hurting. He'll get blisters where the arches should be if he walks long distances. He is basically pretty normal, intelligence is normal, actually a pretty smart kid, but he has quite a time trying to ride a bike, didnt learn until he was 9 1/2 and that was with a lot of work. He wont go out and play with the boys in the neighborhood because he cant keep up physically. P.E. at school is hard on his self esteem because he cannot keep up in any category. He does a lot of sitting around playing video games. I feel so sad that his childhood is passing him up without any real childhood fun. About the only physical activity he likes is jumping on the tramp. I can definitely relate and I feel for you as I know what your going through. My son has a slight limp and is affected on both sides but left more than right. He has some slight involvement in his hands as far as writing and some of his fine motor skills. We too feel fortunate but I continue to look for answers to help him to be more active. It is definitely a heartache in a lot of ways. 

Name: Michelle | Date: Jul 22nd, 2009 2:16 AM
I can relate...my son is 8. For the first time tonight at his baseball game, a friend said to him, "Why do you always have your foot up like this?"(Standing on his toe, as my son does) My son, who is usually outgoing with the other children, quickly ducked behind me with no reply. He had to have been crushed... I was crushed. I had not prepared him and am still at a loss for the appropriate response he should give. The other child was not being malicious, only curious. What should I tell my son to say????? 

Name: SarahG | Date: Jul 22nd, 2009 5:16 PM
I have a 14 year old son with mild cp. If anyone asks why he walks differently he is not shy about telling them. He knows he was born different and we have taught him not to be embarrassed or ashamed by it. When they are the ones to tell people as if it isn't a big deal to them, kids seem to respond better. 

Name: Michelle | Date: Jul 22nd, 2009 5:37 PM
Thanks SarahG. It really helps to hear about your son's confidence and ability to handle the situation. I will encourage my son to do the same. My husband, however, thought that my son should say that he almost died when he was born and I was infuriated with him. He thinks that other children would be more receptive to this than, 'I have Cerebral Palsy, or I was born this way, or This is the way God made me.' I know my husband is trying to help, but I don't want my son to feel like his CP is a big deal, and I feel that his suggested response is a little over the top. Any thoughts? 

Name: Marximus | Date: Jul 24th, 2009 12:16 AM
Hi, Im a 21 year male from the UK, i was diagnosed with Mild CP very earl on, i underwent ocupation therapy, physiotherapy and a whole lota other therapy to help me. I was never able to particapte in like the other children always having to stop earlier in activities compared to others. I was teased aswell. However for myself i just kept working at it, if i couldnt do it i just practied, i cant exactly stand up straight and have a bit of a limp on my left side, but I try to attend physio every now and again, my mother had to fight to get me into a mainstream school instead of one for special needs children. The only advice i can give you is encourage her, she thinks she cant do something remind she can, with my mum and the encouragement she gave me god knows where i would be today.I wasnt able to do many fo the things at school or in the street my friend could bu my mother encouraged me pushed me in the right direction gave me the strength to keep trying. But things liek playing guitar, painting, and drums helped me loads with my co ordination skills and well i probs would have given up without that perservering encouragement of my mother, it might be hard but keep smiling and encouraging. My child hood dream was to join the navy, I have aplied and been rejected , but i left determined a trait i got from my mum and he determined encouragement and il try again soon i promise you that! 

Name: Raven | Date: Aug 1st, 2009 6:42 PM
Hello my name is raven and i have the samething as your daughter, i am 18 years old. i walk with limp and i have a very hard time with balance as well. Righ know i am dealing with problems of my CP i am geting ready to go to college,and i am very scared of what people are going to think of me. my heart goes out to your daughter 

Name: crazy | Date: Aug 3rd, 2009 7:46 PM
I understand what you are saying.I have two children with very visible disabilities .My daughter has CP and her gait is quite noticeable and she is cognitively challenged,my son has Down Syndrome,so of course his disability is written all over his beautiful face.My partner has mild CP.I realize that she has difficulties and is at a very tender age and hard time in life as a teenager.My advise to you would be as simple as helping her to feel proud of her accomplishments.My partner lived his life as best he could when growing up,and never let anyone who may have picked on him bring him down.I know the heartache of seeing your child not fit in.Perhaps you could involve her in some sort of group that would allow her to mentor other children with disabilities.It sounds as though she is trying very hard to live her best life.She needs to learn in her heart and mind that she is not "normal",but she still is a fortunate girl.I think it would help her with her peers if she did share with them that she has a disability,then they would gain a better understanding of her.Then,if they are still jerks to her,she'll have a better measure of who her true friends are.Life is hard,no doubt about it,I really wish your daughter well. 

Name: susan | Date: Aug 5th, 2009 3:04 PM
my daughter has mild cp also and walks with a limp she is 5...i feel like were almost the same here expcept my daughter cant talk she tries but cant i have a question can your daughter talk? and if she can could she not for a while but eventually over time was able to? ive tried speech therapy and helping her myself i just want to hear my baby talk!!!! 

Name: Maeleerose | Date: Aug 9th, 2009 9:54 AM
Hi My daughter has only just been diagnosed with spastic diplegia in both legs at 6 years old. For the last couple of years we have been given the run around with physio, gait plates and serial casting for treatment of toe walking and as none of this worked we were sent to the specialist who said it was cerebral palsy although by then we already worked that out for ourselves. This year she has had her first dose of botox with plasters for 4 weeks (the first of many). She has also got weekness in her hips and arms/hands that we are waiting for therapy and testing. To look at her without her splints on you would never know except for the toe walking. It is hard on her and she is getting really down about things, she was the fastest child in her class and now is the slowest (due to wearing splints) I don't like to think of the future as we were told she may start surgery in about 4-5 years, right as she begins high school not a good time. I know all of you are feeling the same as me emotionally, it's hard but I have to be strong for my daughter. 

Name: Support | Date: Aug 14th, 2009 7:17 PM
Believe me I hear you. First of all I would explain the situation at school in a meeting with the principal and teacher and request the support from the school to promote understanding among all children. Request a physio or recreational play therapist at school to incorporate more team building games, into gym not competitive games to build friendships.
Socialization can be a tough thing for some children and maybe you should make it one of your child's NEEDS and incorporate it into your child's educational learning plan at school. Buddy system anyone? --all the best 

Name: Jessie | Date: Sep 15th, 2009 10:08 PM
I am 21 years old. I was nearly diag with mild cp when I was six years old. I could walk but slower little awkward then most kids. The weird thing was I starting crawling early, walking early. I have the prob. when sometimes says hurry. I have my mild cp moment. What is weird some days I feel normal and some days I have mild cp does this happen to your girl? 

Name: Rebecca | Date: Sep 17th, 2009 7:49 PM
Hi my name is Rebecca and I am now 25 years old. I was born with CP but it was not diagnosed till I was in Kindergarten. My CP also affects my right side and at times I walk with a limp. I understand being teased and not being understood by my classmates even as I was going through college. The major advise that I can give you is to give her a lot of encouragement because she will hear a lot of negativity, encourage her to dream big and work hard. Had it not been for my family giving me that needed encouragement, I would not have my masters now. CP is never something to be ashamed of, but something that can teach you to be stronger, if you can get her to understand that it makes it easier to tell others, and hopefully, will make them more understanding. She may never know the impact and the encouragement she could have on others if she learns to move beyond her disability. Keep on top of her to exercise and stretch, although CP is not progressive, lack of continual exercise and stretching will make for less optimal movement and increase in muscular pain-I am learning that the hard way. Also watch out for scoliosis, I was not diagnosed till I was in my 20's and it is putting a lot of strain and pain in my lower back. I hope this helps....you and your daughter are in my prayers 

Name: Kimberly | Date: Sep 28th, 2009 5:19 PM
Hi,

I am 26 years old and I have mild CP. I acutally didn't know I had it until a few years ago (my parents kept it a secret), but I do remember part of my childhood and it explained a lot of what I went through. I had epilepsy as a kid and was slow to learn how to walk. I was told I would have trouble with balance, especially side to side motion. The doctor told my parents that I wouldn't be good at things like dance. I was in coding for a few years in grad school, but then my parents pulled me out. My parents also made sure they put me in sports that would improve my balance like dance, soccer, and horseback riding.

Right now the things I struggle with are: light headness, muscle weakness, muscle aches, joint aches, fatigue, sometimes I have involuntary movement (very slight), shaky hands, or a slight eye twitch.

No one knows I have CP, I have no obvious physical problems. Just problems I feel. I am a runner (been told I run in really good form) and a competitive equestrian with multiple state placings. Right now I am seeing a dietician to improve my diet and make a lot of my nuero problems less noticable.

Many children end up getting better, it doesn't get worse. So the outlook it good. If your child has mild form, I would strongly suggest watching her in school...she may not need to be in special classes and I would strongly avoid it if possible (from experience coding stays with you, you don't want your child treated different if she/he doesn't need to be, this may lead to confidence issues and hard time making friends). My parents moved me in highschool and that was the best thing. The new school system didn't know I had issues and I became very smart, graduating with a 3.75GPA and in high level classes. It was almost the old school system holding me back because they thought I had a problem, not my disability. In college I graduated with a 3.3 GPA for my BA. I am looking to go back to school for my Masters.

I would strongly suggest horseback riding as something to help your child coordination. Or hippotherapy (depending on how idenpendent your child is). I volunteer at the riding therapy center and its amazing how those horses help! The motion of a horse simulates the motion of walking (its the only thing that does) it will improve your childs balance. Get them into sports that incourage balance, like dance, horseback riding, martial arts, etc. Also, art classes! Will help their fine motor skills.

Good luck! 

Name: Jenny | Date: Oct 29th, 2009 9:00 PM
i am also 15 and have mild cerebral palsy, i wore foot braces for most of my childhood and now just need to wear insoles, i cant walk or run anywhere near as fast as my friends and struggle in P.E. it is much better to just get your daughter to tell people that she has the condition, hopefully they will understand. you can live a normal life with mild cerebral palsy. i do. 

Copyright 2019© babycrowd.com. All rights reserved.
Contact Us | About Us | Browse Journals | Forums | Advertise With Us