I was wondering how many people actually come to these health boards and read through the cerebral palsy section....Im still somewhat of a newcomer to the CP life....My 4 yr old daughter was diagnosed with it at the age of 7 months...Its not severe...but it's not very light... She can not walk or talk, or support her self in anyway what-so-ever....shes getting pretty good control over her head.. She's in a special school mon-fri...all therapies and certified teachers.. She's come a long way....Dr's said she wouldnt be doing much....shes doing a little more than what they expected...such as vocalizing...shaking her head yes/no when we ask her questions..mentally she seems to be very bright...but physically , thats our biggest obstacle...
All I know is that its getting very hard to deal with certain things...and also, I dont really know anyone who has CP...beside the children in her class and school. I just want to hear how everyone else is living and dealing with their own situations....I think its the most interesting thing....knowing what other people go through... Maybe some helpful tips on dealing with life...or anyhting that comes to your mind...

Thanks for your time...and i hope to hear from you all soon!
~Alyson~

Dear Alyson,
Although my Cerebral Palsy is very mild. I hope I can give you encouragement with your situation. I am 51 yrs old and have had a very productive life. I was told that I had Polio as a young child. It wasn't until I reached my fourties that I got the correct diagnosis of Cerebral Palsy. I contacted the United Cerebral Palsy Association and was sent some very informative information about Cerebral Palsy. There is always hope. Your daughter can grow up and lead a productive life. It will take love and understanding on your part. Hang in there I think your child will surprise you. I am sure she will give you a lot of love in return. She might just surprise you. I send you my best wishes for you and your daughter.

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Dear TRV,

Thank you very much for your encouragement. I appreciate hearing from other people who have CP. Im sure everything will be fine for us...We still have a ways to go....she's still very young... Thanks again

~Alyson~

[This message has been edited by Sanibel Spirits (edited 02-22-2002).]

Dear Alyson:

I've just found this site and happened upon your message. I have a 6-yr old daughter with CP and she was diagnosed a her one year check-up. It's been a long road to say the least. She's not walking yet, her speak is totally intact!We have been doing physical and occupational therapy for the past 5 years and now it is time for surgery to step in. She is now being evaluated for hamstring lengthening and adductor releases. With this I am hoping she will be able to get on her feet and take off on her own. Do not let anyone defeat your dreams and expectations of your daughter. Educate yourself as much as possible! Knowledge is power and doctors sometimes don't like that! Sometimes the parent does know more than the doctor! One specialist told me not to let anyone tell me that she has cerebral palsy, it is just a term they use for stiff muscles! 3 months after that visit, her pediatrician told me she had mild cp! Is your daughter enrolled in any type of early intervention preschool? The week after my daughter turned 3 she was in school and this past September she was enrolled in regular kindergarten. Keep the faith and keep working with her. Don't ever give up! Good luck.

Hi- I am a grade 8 student with cp and I was really lucky to have parents who supported me every day. I have a full life I am doing well in school I get honors in every subject and I take ballet lessons every week- I also bowl every Wednesday. Even though my right side was affected I can do all these things and more- I always participate in gym Broomball is my fave- I hope to become a teacher when I grow up- I hope I have encouraged you- do everything you can for your kid and you never know what will happen

Bye (a)

Dear Larissa,

Thank you for that inspiring email! I pray that Corialle will be able to do some of those things..and if not, im sure we'll be able to help her, and make her feel like she's a part of those activites.. I wish you luck with everything around you...and thank you once again....Feel free to write back....It's nice to hear from you all!
~Alyson~

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Originally posted by Sanibel Spirits:

I was wondering how many people actually come to these health boards and read through the cerebral palsy section....She's come a long way....Dr's said she wouldnt be doing much....shes doing a little more than what they expected...

Hi, I come to this section often to check out what's new. I work in independent living services and have to clients with severe CP and MR, seizure disorder, and a few other complications related to CP.

Don't listen to the Dr. The underestimate people. Not long ago babies with CP and Down Syndrome and other disabilities were placed in institutions because they were not thought to be able to do anything. I am so glad this is not how it is at present. I love my job and my life with my fiance's son who has down syndrome w/ severe MR. People can do what ever they set their minds to. Dr don't see this because people only go to Dr when there is something wrong. It must make them somewhat jaded.
Renee

Hi there. I have a daughter that turned two in October and was diagnosed as having "Static encephilopathy" in November. The doctor of course did not give me much of an explination for this term. I was so flabergasted that they finally had a diagnosis for my daughter that I was in to much shock to remeber much of anything on that day. So since then, I have researched statcs encephilopathy as much as possible and have come to the conclusion that it is either the same as CP or very close. It seems to me they are both just umbrella terms for "brain damage before during or after birth that will not get worse".
As for my daughter, she is now 2&1/2. She is not walking independantly or talking yet. She does crawl and is starting to walk with a walker. I guess she is talking in her own way, she does know a few words like mama and daddy and such. She has ccupational, physical and speech therapy, each twice a month. Fortunatley, her first pediatrician gave us the name of a local organization for all of these therapies and my daughter has been having therapy since she was 16-18 months old.
She was about 17 months old before she could actually sit up by herself then soon after she started scooting and now she crawls faster then I can run. lol. She can stand up as long as she has something to lean her body on, not just hold onto, but lean on. She pulls herself onto the couch, chair and my bed when I am trying to fold laundry. Her speech therapist and I have recently started teching her sign language. She is catching on very quickly. Although she is very very intelligent, I think she is too stubborn and hard headed for her own good sometimes. Most of the time she is too busy playing to pay much attention when I work with her . lol.
I am telling all of this because I want to say, because our children have disabilties, we can not put limitations on our children. When she was first diagnosed, I wanted to give up on her, I was lost and did not know what to think or do. The doctor told me to keep her in therapy and keep working with her all the time. I have and I am amazed at all she has already accomplished. I would love to hear from more parents that are going through this with their children

Dear Alyson

I know exactly what you are going through. I have a son who will be 4yrs. old in August. He was three months early and born with blood on his brain. He is about like what your I think daugher it was is like. He goes to school tues.& thurs.
He have eye glasses, a g-tube for feeding, back in Dec. he had double hip surgery the one was 55% out of the socket.
You are right they are very smart but as far as physically that's where they need the help.
Jamie

Hello,
My son is two years old, he was diagnosed a couple months ago. I am only 18 and still in school. I feel im not doing enough for my son.

Hey HappysButterfly....

I dont know what kind of person you are, or how severe your sons disability is or what kind of life you both live. It's good that you realize that you dont think your doing enough for your son.... Put it this way, if you think your a "bad" mom....apparently your not cause you seem to realize how things are in reality. There are ceratin ways to think positive..even if you have no energy or hope or faith left in you to give to him. Do you have a supportive family? My family cares for us, but theres no major support or help from them at all... Do you have friends that you can trust? Friends that are mothers that can relate to you being a mother?
This child of yours only has you...no one else.. (maybe a father or aunt or someone-but i dont know)

This young child knows nothing about what life is about or what this world really consist of...thats why you are here.. and now that hes probably going to have a more challenged life (due to CP) you need to be there to support him, to teach him, to guide him, to love him, and to discipline him. I know its hard.. not having the young life you deserve ....having fun..doing what you want when you want...but ya know what...you kinda have to put yourself aside for now...you have a lot of life left ahead of you. If you have a good head on your shoulders youll be ok. Please dont give up...Work him as hard as you can..If he needs therapy...get it for him..if you need anything...its possible to get.. SSI (monthly income for your disabled child) they have ab 800 number u can call.. If u need insurance...get it (medicaid is excellent- a pain the the butt, but good)
Theres this program called DDD (Division of Developmental Disabilites) They can provide mostly anything for you and your child.. paid airfare...a paid for acess ramp into your home entrance... respite care (a professional babysiter/teacher to watch your child while u have free time away..and the list goes on

please... write back to me and let me know all about you and your son...

Alyson

Hi there! I just recently found this board myself. I have a 9 year old soon-to-be step-son who has pretty severe cp. He doesn't walk, has only a few words, G-tube for feedings etc. He recently had hip surgery (February) and we are going through the recovery process - body cast came off a couple of weeks ago. He did army crawl prior to the surgery, and I am anxious for him to feel up to doing that, though he still seems to be experiencing alot of pain and is not interested in that right now. They say 6-8 weeks from the time the cast comes off and he will be much better. He has only been a part of my life since November 1999 but he is the light of my life. Even though he doesn't speak, he does use some sign language and communicates fairly well. I am excited to see new posts, as I have been checking and it seemed no one posted anything new for the first week or so I checked!

I do have 3 kids from my previous marriage (daughter age 14 and twin boys age 10) who also adore Glenn. So I am pretty busy!

Just wanted to say Hi,

Julie

Hi Julie....Glad to hear from you!! I know what you mean about being excited when there are new posts up. Everytime I get an email saying someone has replied, I get right to health boards to see whats new! Im glad to hear about Glenn, your post gave off good vibes, you guys seem like you know what your doing and your enjoying what you have! Good Luck with everything, and please let us know how the army crawl is comming along..and how hes feeling!!! (thats cute-the army crawl)
Take Care!!
Alyson

[This message has been edited by Sanibel Spirits (edited 05-10-2002).]

It seems all you good folks are healthy people (not having CP). I am a Thirty-five year old carpenter, only trade I ever worked. Being a constuction worker for any person is hard. Hard on the body, hard on the mind, and when you have Cp and Epalipsy as I have you can X that by fifty. As most of you have stated your chilren were vary young when you found out they had CP, as was I.I have bad hips pain that shots up and down my left leg a bad limp in my right leg and shotty moter skills. I have had trouble controlling my bowals and bladder when I was younger and seizures on top of that. The point of this is to say no matter what you go through or how bad you think you have it. That is nothing compared to what you child will have to deal with all his or her life. I'm not trying to come down on any one of you I seem what a parent goes through with a child with CP. I cant speak for anyone esle with Cp but the hardest thing to deal with are the bad names they will hear the looks that make them feel they are less then other poeple. The thing is all you can do is deal with it, as for the parent of a child with cp you only have to deal with it for a time. As someone on this tread has said to a eighteen year old mother with a newborn with cp. Saying that she can get help through some program or the other. For her to get some free time away from the stress of having to deal with cp. That all fine and dandy but that child has no break from CP and never will.

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Hello Crazy Cow....

I guess Im left speechless, but yet I have some much to say! I dont know the reason for your post, but I do understand it ..somewhat that is. I, as a mother with a daughter who has CP can and will only see this whole situation from my point of view..I will never know what its like to have CP..and since thats the way it is and we cant change it..dont you (crazy cow) think that we should try to do something good for ourselves? (meaning I, as a mother of one with CP) Such as getting a break... relieving some stress...

From what I understood in your post...you seemed to have a problem with the way we see things or act upon things....Im not sure what thats all about, but i hope you write back and explain a little better. I know its a thousand times harder on my daughter than it is on me...but i am giving 100% effort to help her as much as i can...cause thats my job as a parent, and i love her! NO matter if she has CP or not..
But that doesnt mean i cant think of myself...I have to make sure I stay sane through this lifetime job here with her.. Do you understand my view now...as a mother who is caring for one with CP?

I guess thats all i wanted to say....Please write back and give me some more credit here....as I give you credit for living your life, and dealing with what you have already delt with-cause I know its more than I'll probably ever go through...

~Alyson~ ~Sanibel Spirits~

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AS I have stated I am not coming down on any one. My point is; where you have the option to get away from something that you are dealing with. With a person with CP or the like they will never be able to get away from it. They will live with it day in and day out for the rest of their life. Everything they do from going to the kitchen or going to the restroom they will be reminded. The little things most folks take for granted and never think twice about a person with cp to do these same things will be remended. When ever you think you need a break just take good long look at a child with CP and ask yourself what is there that I need a break from.

Oh I need a break from this CP, Bull!!! I have said I know what a parent goes through I seen mom and dad and what they had to deal with. From the school trying to discard me, not haveing the insurance to get me the healthcare should of had. Nine other kids will cause this. And through all that thing to this day have no clue what it is like having CP. Say you get the flue, you feel real bad for days on end. Through this you have to deal with haveing the flue knowing you will in a few days or so feel fine aain. Having cp there will never be a day they will be fime. They will have their good days and bad days, but never a day where they will be free from having to deal with Cp.

You may think you know what Cp is and I will tell you this you don`t. Until you have to go through daily living with CP you will never know what it is like. Walking along talking to someone and then all the sudden you are laying flat on your face cause you leg just gave out without notice. Or watching TV or something of that sort and then your head and neck snap bad so hard it feel like you broke you neck. Or having a ringing in your ears so loud you can hardly hear someone next to you talking to you. Or being in school in grage school where you have to go to the batheroom. You ask the teacher may I go, she says no and you crap yourself. On top of that the teacher is going to sit you in the hallway telling the rest of your classmates to make fun of you for what you did. Until you in you taughts try to think of things you can do to make your self look like you are walking strait just so someone does not look at you fuuny you will not know what is to have stress from CP.

Alyson my grandson Camron has cp caused my vbac and negligent hospital staff heres a little of what we were told when he was 3 days old on life support. Due to the fact he had cardiac arrest all of his organs were shut down and he had very little brain activity after a meeting with several drs it was decided that life support should be discontinued!!!! There was no hope this child would be anything but a vegetable,can you imagine what my daughter was going thru?? The day she was to say good bye to her only son she changed her mind and asked for 1 more day with him. This story goes on and on Alyson but Camron will be 3 in July and he knows all of his numbers, letters, scoots around everywhere on his bum and will tell you "my (he calls himself my) can't walk did you know??' Now if thats not something to give you hope tell me what is?? Our family believes very strongly that no one can ever tell you what will happen with a cp child and Alyson he is just so happy all of the time he finds funny in all things and he makes us laught a lot and we all need that. This has been very hard on my daughter and husband as they have a 6 year old and I feel my daughter has never been the same since the birth so I can appreciate how you must feel. Do you have a lot of support such as being able to have some time to yourself and some help with your household ?? thats very important to everyones well being {how you are I mean}
We all feel that Camron will grow up not being an angry or bitter person because he is surrounded with love and he radiates that in return there are many people in this world who suffer in more ways than these cp children ever will and you know these cps are very normal children because there really is no defination of just what normal exactly is. I firmly believe that how you treat your child will define the type person he will grow up to be.
Take care of yourself and thank God every night for each day you have with your child. I hope I have given you some encouragement.
God Bless
Jerri

Thanks Jerri!
It felt good to hear a story like that! God Bless Camron...and yes, things work out for a reason or a purpose. I do have support from my friends and family members-Thank God for that!
My daughter is usually happy and well behaved, as long as shes being occupied in some sort of way http://www.healthboards.com/ubb/smile.gif

Take Care and best of luck!
~Alyson~

Alyson I forgot to ask you what happened to cause your daughters Cp you are aware that it is almost if not always caused during birth or just prior to. My daughter should never have been allowed to try natural delivery as she was sectioned on her first delivery what happened to her was 10 hours into labor her uterus ruptured and went un noticed for nearly 20-30 minutes. I have to tell you this funny little story, my oldest girl is a nurse at the childrens hospital (she is single) so spends a lot of time with Camron visiting her married friends with children on one particular visit one of the other children said to Camron "Get up and walk like us" to which he gave his usual reply "my can't walk don't you know" at the end of the afternoon instead of Camron trying to get up and walk all of the other children were scooting around on their bums like Camron. Anyway it was much funnier to have seen than to tell about. Take Care Jerri

When my daughter was delivered, her heart rate was low and she wasnt breathing. They rushed her to ICU (intensive care unit). She was on the heart monitor, respirator, feeding tubes and in the incubator for about a week and a half.
So it kinda happened during delivery...we're still not sure whos exactly at fault here.

And for the story you were telling us with Camron scooting around and the other children imitating him...thats the same with my daughter. http://www.healthboards.com/ubb/bouncing.gif She cant talk to tell them that, but i will talk for her..and even the younger children will lay down on the floor and do what she does... such as babble like a baby, kick her legs when excited..etc. It's pretty cool I guess cause the others cant understand exactly whats going on or why they cant do certain things.

Talk to you soon!
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~Alyson~

Hi Alyson is your daughter in theraphy?? Camron was in physico and occupational theraphy and speech he no longer goes to speech but everything else he does we now take him swimming not that he can swim but its relaxing for him and we find he is on an equal par with other children, once he tires you can see the paulsy with his movements and he will drool its hard to know if this will get worse as he gets older. My daughter is suing the hospital and the Doctors as well as they were the people encouraging her vaginal delivery even though she had the sme trouble with her first child a tear in her uterus that is, the hospital is not so quick to encourage vbac delivery anymore after this as well she can never have any more children

Hi Jerri
My daughter goes to a special school for CP. She goes mon-fri 9am - 3 pm.... specialized teachers, occupational, speech, and physical therapies... they take them swiiming horseback riding to the movies, parks and much more! its excellent...she went to this school at age 3 (shes now 4)..and shell continue to go untill shes in her 20's..

prior to the school; we had therapists come to the house (all paid for by her insurance)..
shes had therapy since about a year old..
its beena long road..and it will keep going..but were very happy people which helps alot http://www.healthboards.com/ubb/smile.gif

I think I have a problem here somewhere

What do you mean Jerri? Is everything ok?
~Alyson~

Hi its Friday and I just finished my final exam and I am exausted sometimes all I do gets to be too much for an old doll like me lol.
I tried to post to you and I would get on my screen You are banned from this site, it was only here so I mailed them to see the problem I didn't hear back but its ok now must be a glytch.