Welcome

I think that the most difficult challenge in raising a child with Cerebral Palsy, actually comes from within myself. I think confronting the 'pain' of knowing that my child is different and may not enjoy all the same things that I have enjoyed in my life does cause real pain. But honestly, its not a problem of my child...its my own weakness. I think we as parents need to be strong, and overcome our own limitations and weaknesses. Our children face and overcome much bigger challenges than we ourselves have.

Am I alone in feeling this way?

What is your biggest challenge?

ok i read both stories and you know you have to believe in yourself to make it thru a day i have a 6 yearold little girl that is my world when i was pregant with her and her brother at 18weeks i strated to bleed and it was from her sac and ther hospital told before i had a ultra sound that i had already lost her and that i had to deal with .. will i ask for a ultra sound to be done and she was still alive and that her plasita tore away for the walls of the utores and that she was lacking oxygen and so when she was born she weight 7lb.2oz and i went to term with twins and her brother but wehn i looked at her i knew something was wrong she had trouble swallening for a while and she also did not walk til she was little over a 1yearin a half old to were here brother took like nothing.... to this day she is know six years old and granted she is still in dipers and she will always be in dipears but she does not let that get her down she plays with kids her age she plays with her older sisters and she runs and she just graduated from kindergranden.. so yes there are times were it is hard but there are times when it so easy but you never know what those days are til the next when they wake up they could cry all night cause of there legs hurtting (been there )could be sitting at the hospital for ten days due to constpation and then sitting in a sleep study to watch your child sleep it is hard i have done it all but i can say this all childern are beauitful no matter how god made them and i am very thank for the kids i have i am a 31 yearold mother of five and have been married to a wonderful and careing man that is very understanding so those readers who thinks it is hard when times get ruft take a break have some one sit with them and get some alone time trust there are times when i need and if it weren't for my husbands family i would proboly got crazy but yes i would say take time for yourself cause like i said there are good and bad days but you never know what your going to get till they wake up the next morning if you would to talk to me please feel free to e-mail at kasiblaylock@yahoo.com...... you guys just keep your head held high and keep smile because that baby is your pribe and joy
kasi

i also have a son 1 an a half with CP, and feeling the same grief and guilt...it is very hard day to day to stay positive and hopeful in front of child and family and privately be grieving over all that may never be for him. I dont know anyone else near me that has a special needs chld so i find that these online suport groups are immensly helpful.

hallo all,
I am very happy to have come through this website. I am also raising a child with cp.He is one and a half and such a bundle of joy. he is yet to sit crawl or roll. he also rarely smiles and if he does i celebrate the whole day. I believe he has a great future the rest are my own fears. He is a fighter that I know. he surved the difficult birth and his stay at NICU and he will survive this one too. I wish you all the best in bringing up this precious children.
Purity Makori

I have a 7 month old, who has been diagnosed with CP (quadriparesis, mixed tone). He was diagnosed very early as he had a known event (cardiac arrest, as a result of open heart surgery, with prolonged resusitation). We are thrilled he is still with us, as for a while it did not look like he was going to pull through. He has made a remarkable physical recovery, and blew everyone away with how quickly he began oral feeds again. He is still quite young and I am just going through the process of acceptance, and my fears are exactly what the rest of you have described, in that he will not be able to experience all the things I have enjoyed in my life. My husband and I are doing our best to trust our son, and let him lead us through his needs. It has been difficult as no one around us has ever dealt with a special needs child. It is refreshing to read about other parents experiences and know that everything will be all right, and every accomplishment our son makes is so much more because of what he has lived through.

I agree, as parents you always want to protect your kids and want them to be the best they can be. My son is 17 now. for the last 15 or so years, we have told him he can do anything is wants, everyone has disabilities and if there is something you want to do you can ! Well my sons dream is to play football. Listening to him tell you there is nothing in the world he would like to do more just breaks your heart. He went to the couch and asked if he could try out and of course, he discouraged him.
Alittle about Daniel. HE is very social and has been mainstreamed in public school. He walks with an very abnormal gate. He can not ride a bike and often falls down thoughout the day. He refuses to use any crutches or canes because it shows he is differnt. AFO's make his failing worse. He also has major Learning disabilites which seem to be more of an issue with him then the CP is. He seems to be embarrassed for himself and hides the fact that anything is wrong. Again. as a mom you just want to save him from being disappointed. He will graduate this year and it scares me. He plans on going to Woodrow Wilson but we are not sure if they even offer any classes he is interested in. He has never dated. Would love to go to homecoming and prom before he graduates but the girls are too shallow to give him a chance. He works at our local GIANT grocers 2 days a week as a bagger. Which we are thankful for. How do you prepare them for the disappoints they will encounter ? We are also not sure if he will be able to drive, he has taken the permit test 4 times and has failed it everytime. How do you tell you child now that he is 17, he does have limitations and will have to settle on a career because of his disability. ANyone at all with older kids with mild CP ?

Dear Parents,

I came across this website today and I wanted to take a minute to share my story.

My twin brother, Andy, and I were born in April of 1979. We were three months premature, weighing about two pounds, and each had our own complications. I was diagnosed with CP and as I aged the only way I could get around was to crawl. I was still crawling at age four. My mother took me to countless doctors, every one of them told her the same thing, "get your son a wheel chair because he'll never walk."

She didn't. She kept looking until she found a doctor who was willing to try surgery. By the time I started kindergarten I was walking.

The road has been long since then: I've needed several additional operations, including open spinal surgery when I was eight and several muscle lengthen procedures. But all in all, I grew up as a relatively normal child. Still, I had a very noticeable limp and was undersized. Many kids made fun of me.

When I got to high school, my brother joined the football team and I was desperately wanted to play a sport. I thought about wrestling because it was one of the few things someone my size could do, but I was sure I would never make the team. I told my mother and she drove me down to the school for tryouts and practically pushed me out of the car. The first day of practice the coach looked as if he was barely tolerating me and the other kids kept snickering. I wanted to quit but for whatever reason I can't remember I didn't. I made the team that year. The varsity team.

The truth is I was never a very good wrestler, I only won a handful of matches, but that was a turning point in my life-- when I realized I didn't have to live with the "handicapped" label and all the expectations that went with it. My future was my own if I was willing to fight for it.

Most of my recent challenges with CP have been fighting for acceptance with the rest of society. I still walk with a limp and am extremely short (about 5'1) and I found it nearly difficult to get a teaching job even though easily had the qualifications. I've come to the realization that when you live with a disability, sometimes you have to be twice as fast and twice as good and sometimes only for half the credit.

I decided a long time ago that I would never let other people who I was or what my limits were. I decided instead to take a job teaching abroad and I'm now currently a 7th grade literature teacher in Seoul, Korea.

What I really want to say to the parents reading this, is that the world is full of people that will judge your children the second they see them. Others will always have expectations and try to push then on you and your child. Don't let them. If my mother had, I'd never have taken my first steps. Always expect more from your children, not less. Above all, teach your children to never let anyone tell them who they are.


Sincerely,

Todd S

Most of you sumed up the fears that I have for my son Ayden whom has cp on the whole right side of his body. In the beginning I was depressed for my son, to know that people out there will judge him and tease him without realizing what this can do to someone who didn't have any say in this dissability, that he didn't choose to have this. But I also realized something amazing when Ayden is somewhere it is asif he attract people to him with his open mouth smiles and giggles and everyone adores him. It is tough to see another baby his age and think that he could've been at this stage now, but then immediately he will look up at me and give me a smile, almost to say that I must not give up hope on him. It will be his 2nd birthday 14 Feb 2009, and he proof everyone wrong step by step but on his own terms. He gives me hope where there is no hope and brigten up my day. He loves his sister Anishka who is turning 6, and she adores him and helps him if she notice that he is struggling. I feel that God has put Ayden on this earth and in my life, to make me realize that there is always challenges but with alot of love and patience, everything is worth while to wait for, and to take each day as a present, never knowing what surprise is lying ahead. Ayden pushes himself in doing or trying new things, and gets very frustrated with himself when he can't stand up, but he never stops trying. I wish the world could look at kids with cp and not judge them but rather think that maybe we should start living like they do, cause their willingness and indurance is breathtaking, and make me sometimes ashamed of myself not trying harder. I will still have my down days, but I know that there will be more good days than bad days.

I worry what the future holds for my 4 year old grandson who has CP (spastic quadriplegia) but I also worry what the future holds for his extremely bright 5 year old sister, just as I worried about my own two children as they were growing up.

The truth is: being a parent means you are genetically designed to worry about your kids and want their lives to be wonderful, CP may mean you have more to worry about but take heart from Gloria and Todd's messages as I'm sure their parents worried just as you are doing now, they are showing you what the future may hold for your kids and it sounds perfectly 'normal' to me, thank you both.

Of course everyone's story is different, I know my grandson will never walk and he may never talk, but we will push him to be the best that he can be, and he will be the smartest, the most handsome, the funniest, most talented and most perfect kid around. Just like his sister and just like my kids were and just like your kids will be too!

Elaine