Hello, guest
|
Name: crackers
[ Original Post ]
I am just wondering if anyone has any experiences with a child with mild cerebral palsy. My daughter has this, and it is hardly noticable to most people. She walks with a slight limp only. She is affected on her right side and so is weaker in fine motor skills on that side. Her balance is poor and it has taken her longer to learn skills that most kids take for granted, like bike riding and zipping zippers and playing guitar. The thing is, most kids with a more noticable case get more attention. My child tries to fit in to the "normal" category at school but is unable to keep up. She walks slower, etc. but won't tell the kids why. Therefore she is teased and ignored and not given credit for her "major accomplishments". Can anyone relate. I know of no one who is like her and it is really hard to deal with emotionally. We are fortunate in so many ways, but we have our own heartache to deal with as well. She is 15 years old.
Your Name


captcha

Your Reply here


 
Name: alliegator | Date: Mar 23rd, 2008 11:56 PM
I'm 16.
I have himpelgic CP on my left side.
I feel her heartache is well..
If there's anything I can do let me know. 

Name: lindalu | Date: Mar 24th, 2008 2:31 AM
My daughter does not have Cp but early in her life she was miss diagnosed with severe Cp. My daughter is now 22 years old doing wonderful she has since been re diagnosed with a congenital spinal cord injury. Her injury had left her wheel chair dependent and unable to do many things for herself.

I too had to watch my daughter go through the wonders of teen hood, at times with a teary eye. I wondered how things would turn out for her when she finally made it out of those demanding and often times stressful years.

Trust me being a parent we all have heavy hearts watch our children go through rough times, when they cry we cry even though we don't show it in tears we certainly feel it in our hearts.

Mark my words your daughter will be fine, one day you will wonder what all the worry was about. She seems no different then any other teen her age, she just has a limp. The other kid may have red hair or the next may have splotchy skin. Keep the faith, she will be fine! 

Name: JENNIE | Date: Mar 25th, 2008 11:16 AM
i have a little girl with mild cp and i am very worried about her and i wounder how is she goint to be when she turn 18 or 19 -20 is she goint to be a happy person 

Name: JENNIE | Date: Mar 25th, 2008 11:26 AM
crakers youre situation is most like mine, youre talking about youre daughter and is like youre talking about my little girl. 

Name: mcamus | Date: Mar 25th, 2008 8:46 PM
My little girl will be 2 in May. At 9 months, she was diagnosed with CP. We have heard diagnoses from all across the board from mild CP to severe CP. She rolled over at a year old and now at almost 2, she is so close to walking. She just got leg braces which are a huge help in walking and now the PT is talking about botox injections in her muscles. Has anyone ever had experience with this? Every minute I get of quiet, I cry thinking about if the kids will pick on her if she will be able to walk normal some day and how she is going to deal with being different. To look at her, you don't know anything is wrong with her until you realize she can't walk and she can't keep her balance. Her physical development seems to be the only thing affected, but what if she never walks. It has been over a year since she was diagnosed and I still haven't come to terms with it, and like I said, I still cry every day. I am going to post a poem I was given once, that I read every morning to give me the strength to do everything I can for my precious little girl. 

Name: mcamus | Date: Mar 25th, 2008 8:54 PM
Ode to Special Moms

Most women become mothers by accident, some by choice, a few by social
pressures and a couple by habit.

This year, nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for
propagation with great care and deliberation. As he observes, he instructs
his angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter,
patron saint, Cecilia.

"Rudledge, Carrie, twins, patron saint, give her Gerard. He's used to
profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped
child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a handicapped child to a mother who does
not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of
self-pity and despair. Once the shock and resentment wear off, she'll
handle it.

"I watched her today. She has that feeling of self and independence that is
so rare and so necessary in a mother. You see, the child I'm going to give
her has his own world. She has to make it live in her world, and that's not
going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just
enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally,
she'll never survive. Yes, here is a woman whom I will bless with a child
less than perfect. She doesn't realize it yet, but she is to be envied.
She will never take for granted a 'spoken word.' She will never consider a
'step' ordinary. When her child says 'Momma' for the first time, she will
be present at a miracle and know it! When she describes a tree or a sunset
to her blind child, she will see it as few people ever see my creations.

"I will permit her to see clearly the things I see . . . ignorance,
cruelty, prejudice . . . and allow her to rise above them. She will never
be alone. I will be at her side every minute of every day of her life,
because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, pen poised midair.

God smiles. "A mirror will suffice."

- Erma Bombeck, May, 1980 


Name: Charlies_mum | Date: Mar 27th, 2008 4:36 AM
Hi Crackers
I have a 15 yld son with mild cerebral palsy and I know exactly where your coming from. Its very difficult for these kids to fit into normal schools because they are tease, laughed at and a little different but they are also not severe enough to have in a special school. I have my son in a private small community school. This is his second year and is doing very well. Although the other kids are relatively good with him they still havent warmed to "best mates". My son also has epilepsy which doesnt help. I dont know where your from but if your daughter would like someone to email her own age I think my son would enjoy the same. 

Name: crackers | Date: Apr 21st, 2008 1:23 AM
Mcamus, that was a beautiful story. It really touched me to realize once again that I am blessed to be a part of this. I have learned so much by having a daughter who struggles. Some of it has been very sad as I see people who I thought I could count on for support not be interested. I have seen my daughter be treated badly by many friends, and she has forgiven easily (or so it seems). I have had to learn patience and love and grace over and over again. My daughter has come thru some hard times now that she is in grade 10, including now being diagnosed with a nonverbal learning disability. She also is recovering from an eating disorder. But we are so rich, even so. My daughter is weak on her right side. Are any of your kids like her? 

Name: reading mom | Date: Sep 11th, 2008 6:16 AM
Yes; this is my daughter exactly. She's 7 and we just got her diagnosis yesterday. A "body of evidence" had to be built up before we could get that pediatric neurologist referral. At this point, because her ego is fragile, I've chosen not to tell her why we have to do all this physical therapy. I'll tell her when she's 12 or 13 even though she can really understand it now (unless she asks earlier of course). She knows something's up, but with physical therapy she's out there with the other kids her age doing soccer. She has some learning issues in that she's a visual/spatial person (even though these rely on her bodily weaknesses), so she's not a good match in the public school system. We're trying to maneuver this. Sports will probably get harder as she's older and things get competitive, though. She's a really smart kid and loves art and drama, so we just have her focus on activities that she loves. That's all that's really important. Loving what you do. And having some $$ to afford it. That's the REALLY unfair part. 

Name: Tomi Kaye | Date: Nov 2nd, 2008 1:24 AM
i am a 15 and i have mild cp. i try to fit in with every one and i get tease all and they all know i think. ihave a hard time getting around like walking, writing,speech promles, paying attenion. i know what it is like having mild cp its hard. hope to hear for u 

Name: Mike Hazen | Date: Nov 4th, 2008 7:29 AM
I too have mild CP. I was diagnosed with it quite young. I am a triplet but one passed during birth. My living brother is fine and has no birth defect. As I grew up I was tease quite badly and asked about a billions time what happened to me. With my mild CP I just walk with a slight limp. So I guess people just think that I injured myself. I am now 22 and going for my BoE degree right now. I too never got, nor wanted, special treament and just wanted to be "normal". My question is, is there a brace or somthing in place to pervent limping? I have recently when to the doctors to see in my hip was in need of replaceing but I never heard back from them after my x ray. 

Name: lisa | Date: Nov 17th, 2008 4:25 PM
dear alliegator would you be interested in emailing a friend of mine. his name is nick and is looking for teens like himself to talk to on the internet. pleae email me your email and i will forward it on to nick. thank you! be well. 

Name: emma 22 | Date: Nov 18th, 2008 10:22 PM
my little girl is three and has mild cp, u would never know thats there's anything wrong by looking at her, Her development is very delayed she has just started nursery, my daughter got diagnosed a year ago i find it very hard to talk to people about it as they don't understand how much it hurts,i feel every time my little girl goes to get assessed there's always something else to add to the problems she has, it hurts so much. 

Name: Squarewheeler | Date: Nov 27th, 2008 12:15 AM
I had polio age of 3, age now 75, I walk with 2 half braces, no assistance other than the braces, my folks expected me to just be like the rest, I was not asked to date, except the wrong men, I refused to date. I was just not accepted as a family member, at 17 completly on my own, I worked my way thru college, taught school 32 years, no assistance what so ever, married the wrong man, didn't know what true love as never knowing, that kind of love. Had a son, which my folks never accepted, I had him I support him or go to selter. I finished college taught school, have very good credit, now at 75 and no family, it is very scary. I wanted to be somebody, which I obtained. No one in family now it scares me. My son can not understand, you must have done something, now these are educated people, most are University and college profes. The ones who are not have the education if they want to be. My Grandfather was a MD, so on and on. Only thing I can think of I was a shame to the family. My Mom the few months I was home each year from the hospital, was never close to me. I remember no hugs, etc. But I made a life, because of the nurses that assured us all you can be what you make the choices to train for. It wont be easy for any of you but every one in this ward can be what you want to be. You will have to be educated and trained but each of you can be what you work hard to be. I did exactly that. 

Name: Catcorn | Date: Dec 8th, 2008 5:04 PM
Hello Crackers, my son is 9 and has mild CP and as with your daughter cannot keep up with the "normal" kids but is not recognised by others as being disabled. He walks with a slight limp, cannot do zips or laces and finds buttons hard. Cannot cycle a bike as he has poor balance. He is weak on his left side due to a porencephalic cyst which left him with no front right lobe in his brain. He has also been diagnosed with dyslexia, learning difficulties, adhd and mild aspergers. Sometimes i feel worn out because i have to be his friend as well as his mammy as he does not mix so has no real friends. 

Name: crystall | Date: Jan 7th, 2009 5:02 AM
My daughter just turned 4, and has recently had an MRI done which came back "abnormal" She walks sort of pigeon toed, she rolled over, crawled and walked very late, and is severely delayed in her speech at 4 yrs old.
She drools a lot of times, and chokes on her food often, other than all of this she is a very bright girl and very capable of learning new things constantly!
They say it is a form of cerebral palsy although I am being referred to a geneticist to see if he knows of a "syndrome" associated with this. He is supposed to be able to tell me more long term outcomes of this. If anybody has any similar stories, or any advice or just want to talk please please email me at [email protected]
Im scared to death she will never develop "normally" or that she may develop seizures, I know nothing and wont for another couple of months
crystall 

Name: julie | Date: Jan 14th, 2009 10:00 PM
my son declan has right sidedweakness which affects his arm and leg.he also walks with a limp and cannot do his laces or buttons.this is so embarassing for him.he gets picked on a lot and has no confidence which makes him very angry.ihe is 14in two weeks.it breaks my heart at the minute tp see such a unhappy little boy. 

Name: AFullerton | Date: Jan 22nd, 2009 6:36 PM
I'm a children's author and am doing research for a novel about a young girl (age 12) with mild cp. I'd love to hear stories from parents of cp diagnosed children and/or children teens with this condition. If you'd like to share your story please contact me at almafullerton at almafullerton dot com. 

Name: knight42 | Date: Jan 29th, 2009 5:25 AM
I am 19 years and I have cp which affects my left side and I too walk with a slight limp, but recently I got a product call walk aid and it helps me walk better and I have been told my limp disappears while I wear it. 

Name: Andy | Date: Feb 17th, 2009 10:39 AM
Yeah, I am 21 and a junior in college and have mild cp. I walk with a slight limp to, and none of my friends no why. I have never told any of my friends that I have mild cp. I didn't affect me as much when I was younger I use to play all of the sports and be good at them, but when I was 16 I quit sports and my limp got a little bit more notice able. My friends and people I see all the time ask me why I am walking with a limp and I just usually lie about it and say my ankle or knee is hurt. It is hard to deal with, but I wish her and you the best of luck. 

Name: oroluz1 | Date: Mar 2nd, 2009 10:31 PM
Well, your daughter is not alone. My daughter tries to hide her CP and she just started middle school. The boys are teasing her by asking her out (as a joke), knocking her books down when she is trying to walk with them, telling her that she walks crooked and that she is not normal. As for the girls they isolate her, stare at her when she is not able to do the physical activities they do in PE., and to be honest my daughter has no friends. Her grades are slipping and she is not interested in school as much. The school is doing the minimum for her, and view me as an over protective mother. My daughter is 12 yrs. old, and this is not the end, it is only the beginning. I am in the process of figuring out the best way to handle this situation, but in the meantime I am doing everything to boost her self-esteem. Also, the school recommended that she uses a wheelchair because the students will be nicer to her because they will feel sorry for her. That is not the solution I am looking for. I wish you the best of luck. I am actually trying to start a support group for mainstreamed teens with CP- mild - who are able to walk with and without assistive devices. Hang in there crackers! go to facebook and type up teens with CP - mainstream and the group should pop up. Good Luck!! 

Name: oroluz1 | Date: Mar 2nd, 2009 11:46 PM
If you have CP - mild - can walk with or without assistive devices and are a teenager in a mainstream middle/high school -- sign up for Teens with CP - mainstream at Facebook.com

I am trying to start a group for teens. 

Name: oroluz1 | Date: Mar 2nd, 2009 11:48 PM
McAmus- Where did you find that poem-- I cannot find any books by Erma.

Does anyone else know of any poems?? 

Name: oroluz1 | Date: Mar 2nd, 2009 11:50 PM
I was just wondering -- I know that the UK has a parent on-line organization and I was wondering if this forum consists of members who are mostly from Canada and the US. I always feel like there is more support in Europe and Canada when it comes to physical impairments.
Thank you! 

Name: oroluz1 | Date: Mar 2nd, 2009 11:51 PM
Goodness! I still have more questions! Has anyone here undergone surgery to help improve the way they walk? If so can you list the name of the surgery and who did it or the medical facility?

Thanks! 

Name: oroluz1 | Date: Mar 2nd, 2009 11:53 PM
Alma Fullerton- there is a book already published about a teenaged girl with mild CP -- it is called Reaching for the Sun!! It is a great book! 

Name: michelle | Date: Mar 10th, 2009 11:27 AM
hi there,my 5 year old daugter has been under the hospital for 4 years and we were told lots of diffrent maybe,s we changed hospital to get a second opinion and she was diagnosed with mild cerebral palsy and with having some damage to the brain. my daughter is exacly like your daughter only its affected both sides she is trying to fit in to a normal school but cant work out why nobody wants to be her friend or wants to play with her.i know its very heartbreaking to have to deal with something like this its taken me years and i still find it hard to deal with even now.i am going to look at a new school this month for her that has a special needs unit to see if she will benefit more there and will fit in better with the other children more.
im am allways avaliable if you need to chat . 

Name: S.A, | Date: Mar 29th, 2009 1:28 PM
Hi, I am a 42 year-old woman with mild CP that affects the lower part of my left leg. After searching for years-- I swear, I read the entire internet-- I found some help with it. A neuro-orthopedic surgeon performed multiple procedures (tendon legnthening, SPLATT, transfers). I'm in the last week of casting, which will be followed by a brace and then P/T, and god willing, I'll be able to walk with little or no limp. This is my greatest dream come true, as have suffered and cried over this for over four decades.

As parents with children with this nightmare, please do everything you can to ensure that your children get the best, most valuable treatment. You can have your kid in PT from now to kindgom-come, doing calf stretches and it's really not going to change much. Look at surgeries, FES (especially implantable), locomotor training, etc.

While this situation may be painful to you, it is nothing compared to what your child will endure. Fight for REAL research, the kind that focuses on a cure (vs. what kind of AFO is better-- that's complete crap).

If you see discriminating stereotypes in the media, complain. If you want your child to be accepted in society, society needs to be educated.

Also, enroll your child in a support group or in counseling. You can be the best parent on earth, but there isn't anything you can do about the incredible amount of anguish that a child with this condition endures. You must give him or her the tools to deal with it. My mother though never talking about it made it not painful for me. This meant that I carried this terrible albatross around my neck, alone, and never got any support in dealing with it.

Things are not going to improve for children and adults with CP until everyone who is touched by it-- victim, parent, families, band together to show it the door. 

Name: nchlogan | Date: Apr 1st, 2009 5:00 PM
Hello mcamus, i am a mother to a daughter with mild cerebral palsy as yet she cant walk much and is using a walker that was giving to us by her physio to get her around small distances as she gets tired very esily wlking with it. My daughter is 3 and she has had the botox injections twice, they are very very sore on the child at the start but it has helped sarah cause she was always on her toes and cant put her foot flat on the ground so after she got them she is a bit looser and we can get her splints on easily enough. she has only started this past 2 months taking small steps on her own and now she is trying to walk between the chairs in our living room which is amazing to see. She still wont walk at all without the splints but at least we know we are heading there sooner or later. she has a bad turn in of her feet though an physio said that might never change. Scared as to wat the future might hold for her but she is strong willed an smart so we are hoping it will be a good one. 

Name: cdandelismom | Date: Apr 12th, 2009 2:23 AM
I know exactly what you mean. My son is just 5 years old, but for him to run a short distance is a big accomplishment for him. It is big deal when he makes a complete sentence. He is also deaf in his left ear and so he has a speech and language developement delay. He is a great kid, but it just seems like he has to struggle so hard at things that normal kids take for granted. We just found out about the CP, the dr. also diagnosed him with autistic spectrum disorder. Then sent us for tests and his EKG came back abnormal. So we just found out that he has ASD, (a hole in his heart), It's just like wow, when does this end. Caleb is so strong and has come a long way. But it is so hard to understand why it is you kid that has to go through it. I know it could be worse but why my child. 

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. 

Copyright 2017© babycrowd.com. All rights reserved.
Contact Us | About Us | Browse Journals | Forums | Advertise With Us