15 answers

Seeking Moms with Children Who Have Cerebral Palsy or Hydrocephilus

would like to meet moms in a similar situation to mine, my five year old son has severe cerebral palsy, hydrocephilus and other problems, from being born premature. I would like to meet parents in similar situations to just have someone to talk to who understands what im going though. I have really good friends, but they really dont understand and i dont hold this against them, just like to no someone who does understand.

What can I do next?

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Hey D. my son who is 7 has cerebral palsy. I found out that he had it when he was 1yrs.old and it was hard on us. It has been hard tryn to find someone that is going though the samething! I just want to tell you to take one step at a time and everything is going to be great!! If you need someone to talk to let me know I will be here?

More Answers

try FOCUS (Families of Children Under Stress) ###-###-####

focus-ga.org

and Parent to Parent of GA ###-###-####

www.parenttoparent.org

also, get involved with the school your son attends. they will be a great help even though it is a regular elementary school.

try a church with a special needs sunday school.

good luck. prayers are with you and your son.

S.

Hi D., I am a pediatric occupational therapist in Nashville. If you are in Davidson county, you can contact Harris Hillman School. It is the Metro school for children who are medically fragile, many who have cerebral palsy in varying degrees. There are wonderful teachers and parents who would be a valuable resource for you. You can also try Easter Seals or call Tennessee Early Intervention Services (TEIS). They serve younger children throughout the state, but they may be able to give you other resources. K. B.

Hey D. my son who is 7 has cerebral palsy. I found out that he had it when he was 1yrs.old and it was hard on us. It has been hard tryn to find someone that is going though the samething! I just want to tell you to take one step at a time and everything is going to be great!! If you need someone to talk to let me know I will be here?

Hey D. I cant say i know what your are dealin with as a mother to have a child with this but i Have a brother that has cerebral palsy and he is now 30 i am younger then him but i look at him as my baby brother he is also my life beside my kids... I have help my mom take care of him as long as i can remember.. My mother had took care of him from the day he was born and still does till this day it is very hard on her at times canuse she's getting older but she wouldnt have it any other way.. he also has alot of other things wrong too.. he cant talk he cant do nothing for his self...I Also had my youngest son a month early and we have been in and out of hospital.But if theres any thing i can do let me know i have been lookin for a job to where i can work with kids that have things wrong with them.. good luck

Hi D., I am a pediatric occupational therapist. I work with special needs children of varied diagnoses. I wanted to let you know about a rally at the Georgia state capital on November 4th. It is to protest several cutbacks that have been made in the Medicaid System that have directly affected many children with special needs. The rally may be a great place to meet people who have and understand special needs children. The website is www.kidshealthcarega.org Hope to see you and your son there!

Hi there...
I am not a mom with a child with cerebral palsy, but I did grow up with my younger brother who has cerebral palasy. Life was a lot different than others because of this. My mom also has created a bunch of programs for special needs kids too. If you are interested in talking send me an email ____@____.com

How are you D.? My name is M. (28) and I have two girls age 8 and 5, the youngest of which has cerebral palsy. She was officially diagnosed in March of this year. We were using the umbrella term "developmental delay" until then. I am anxious to meet you if you would like. At times, I find this disability difficult to deal with especially when other adults don't know what is going on and is ready to cast judgement. Please call ###-###-#### if you would like to talk. I work two jobs and go to school online so if I don't answer please leave a message.

M.

Hey-

I am sorry to hear about your separation. But us woman are such strong creatures I know you will be okay. I do not have a child with cerebral palsy. I actually have three healthy, beautiful children age 8-5 and 2. I did want to lend a ear and an empathetic heart to you if you would like. I live in Atlanta as well and hopefully soon will be relocating to St. Mountain. I will leave my e-mail address which is ____@____.com forward to hearing from you. Take care.

i have a 10 year old foster daughter with cerebral palsy i had her for 6 months then they send her back she stays for 3 months then she is returned to me i couldnt be happier i am a single mom and it is very hard to do alone but the rewards are so worth it just her smile brightens my life and i also have a 8 month old and an 18 year old in college and an 21 yearold newly married and an 23 year old army soldier serving in irag my life is def not boring sincerly J.

Hello. Wow, it sounds like you are going through alot. You definitely need to reach out for some support. I am a school social worker and many of the parents I work with find that a local organization, parent to parent, is very helpful. Here is their link. Good luck.
www.parenttoparentofga.org

My name is S., I cant say that I am going threw the same stuff you are but i am kindve in the same boat, And yeah youre right people and friends cant really relate to these problems even though they are trying to but you just dont get it unless you are actually going threw it with youre child.. My son alijah was 2 months early and he was hospitalized for a month before i got to bring him home he had some problems after birth , He was born without his right ear and of course had normal premie problems after bringing him home for two weeks he was agian hospitalized for reflux of the blatter and sleep apnea he also had alot of other little issues . He was hospitalized almost every month for the first year he was born and it was very hardf on me , i thought his troubles and everything was gone after he turned 1 but it was two months after is 1st birthday that he was diagnosed with leukemia and i thought my world had ended , not to mention i was pregnant with my third child, I couldnt imagine my child going threw anymore stuff or pain i thought he had allready been threw so much that i didnt want him to hurt anymore i just wanted him home and with me those two months at home without him beeing in the hospital before he was diagnosed was a god send and i just wanted that back , i blamed my self for a long time thinking it was my fault somehow that i must have done something wrong , but i look at my 5 yr old and he is the strongest person i know ,he has been threw so much and he still keeps going on,, I know peole tell me that i am a strong person for keeping it together and of course i dont think that way but if you think about it , mothers who have to go threw this with there kids are very strong , because we know we have to be there for them , and we just dont give or selfs enough credit for it , because most moms that arent going threw this will tell you how to you do it. how are you not losing your mind. and i guess its the same answer all the time you have to be strong for your kids so they will know they can get threw it and it will be ok and that they are no different then anyone else. Even though this arent the same problems and every child is different i know where you are coming from and even though i dont give myself enough credit because you just dont see your self like that , I will let you know that it takes a very strong women to go threw somrthing like this with your kids and you are very strong person and you need to give your self a pat on the back.. I hope i helped in some way or at least made you feel a little better about the great person you are ,,,, if there is anything i can do please let me know..

Hi D.. While my son does not have cerebral palsy, he was born with some other birth defects. He looks OK on the outside, but from the time was born he's had this horrible cough due to a very damamged trachea. He wasn't sick, but people would stare and make comments and ask if I'd taken him to see a doctor. People can be very cruel. We've had our fair share of surgeries and seen the inside of Vanderbilt Children's Hospital more than I ever cared to, but he's doing much better now. He also has trouble eating at times due to surgeries on his esophagus so eating out in public can also be difficult. It's normal for him to choke and cough up food but people still just love to stare. Anyways, having a child with any type of disability makes the parents have an instant connection so let me know if you need anything. I'm sorry to hear about you and your husband's separation - I know that isn't helping your situation. Hang in there - you are a great mom!

Hi D. I am a 27yr old stay at home mom my son has cp and i just found out he might have autism my son is very special to me and i have a 2 year old daughter and 2 step kids. i would like to talk more bout our life if u are interested.

hi im W. i have my nephew ha has cp,his name is brandon he is 9yrs, he was born a normal child, at three and half months he caught R.S.V. he was in the hospital for 41 days,which is not too long when you talk to other mothers who has been there for 18 months,or longer,anyway i am trying to raise him by myself,i am single,his mom passed away a week before he was able to come home to stay after he got rsv.i know it is hard to not have anyone to talk too because they really dont understand what we do go through, we worry is my child going to survive the next episode, anyway i having a problem with the school system they want to place him where they want him to be not where i want him to be they say to benefit him i think it is more to benefit them.im here you want to talk, have a good one best of luck. W.

my 14 year old daughter was born with congenetial hydrocepalus,she now has behavior problems,vision problems,and alot of mental issues she has a very high I.Q, but when it comes to book work she has a hard time dealing with it, she is very hands on and learns differently than other children she is also very little, she can pass for a 9 or 10 year old

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