Help me.

Dorothea - posted on 03/15/2011

Crystal,

I'm sorry you've had such a rough time. I hope by now things have improved.

There's nothing wrong with your husband being your best friend. My husband is mine. He get's me. Ya know. But I do have girlfriends I hang out with too.

I can't stand the stupid looks but have come to the conclusion that the general public doesn't know what to say or how to act around a person with a disability. It's our jobs and mothers and fathers to treat our children the way we want the world to treat them. Will you still encounter idiots? Yes, but, realize that they are acting out of ignorance (9 times out of 10). I have never met a person who was outright mean. But I have encountered stupid comments, dumb looks, stairs, and everything in between.

Have you looked into finding a support group in your are for children with disabilities. Some of my faviorate people are in my support group. Although my son is the only one who uses a walker, and has CP. We're all in it together.

Good luck!

Dorothea

Carrie - posted on 01/22/2009

Hi, Crystal,

I am the mother of twin girls who are 5 now. I have one typical developing daughter and one who has been diasnosed with severe cerebral palsy , global developmental delays, eplipsey, hyphothroidism and central precious puberty. She doesn not talk, walk. She had hip displaysia and a leg length difference. The doctors waited until the hips were further along (out of the socket about 60/40 %) and then did hip surgery on both sides. She was in a full body (spica cast) cast for 6 weeks. It was a rough time. She does great now. No displaysia. She bears weight on her legs in a supine stander for 1 hour a day, 2 times a day. Has of your docs said anything about surgery? She receives OT, PT, Speech, and Aqua therapy though out the week. She has transitioned in to her sisters school system (grade K) . She goes once a week for music class and such. This was a hard decision. The children at first had never seen anyone like her and never saw a wheelchair. They thought she was a baby  in a stroller. Now they have come to know her, and learn that everyone is different and they actually fight over which one is going to sit next to her when she is there. As far as the dirty looks, I understand. There will always be someone who will do this whether it its at the grocery store, school, doc office , etc. Just ignore them. You are a special MOM who has a Special child .They just do not understand. Some people are very kind and want to learn about you, your child, the up and downs that you have with him. Some could care less. They are only worried about their self. My husband is my best friend also. I believe that is because you share a unique bond because of your child. They know and understand everything that you do for him/her. They are living it with you. Again until you have been there you can't really understand it. I am here if you ever want to talk !! Keep your head up!!

Ashley - posted on 11/06/2008

Hi, my name is Ashley and my 22 month old son, Marcus, has mild to moderate spastic quadraplegia cerebral palsy. Marcus can sit on his own until he starts using his hands and then his balance goes and he falls over. He tries to say words, and we can understand "hi", "bye", "nigh", "daa", and "maa". He can walk with the assistance of a walker and wears DAFO's. He just recently got a SPIO, which is like a spandex vest and pants. He wears them because they provide the input that he needs to know how his muscles are supposed to work. Marcus still has to have his food blended or it has to be a soft food, otherwise he will choke. He still drinks from a bottle, although he can drink from a cup or water bottle with help. He has reflux and has not gain weight well. He is only 19# 8oz and like 32 inches long. He does have a problem with biting his hand, and we cannot find anything to help. We have tried all sorts of chew toys, ect, but nothing is working. He does not have good upper strength at all. He does not crawl, but rolls to everything. We live in a small town and we get great support from everyone. Marcus gets physical therapy atleast once a week, occupational therapy twice a month, speech therapy 1 to 2 times a month, and early childhood services 1 to 2 times a month. We are currently looking into Marcus having the selective dorsal rhizotomy done. He is already on baclofen and that is helping.

Jeanie - posted on 11/05/2008

Hi, I'm so sorry to hear how frustrated you are. I've been there. My daughter was born with VACTERL which is a disorder that affects several areas of her body. She is 4 1/2 years old and has had 30 surgeries to date. She also had bilateral hip dysplasia and did not walk without assistance (walker) until she was over 2 years old.

I definately understand the stares, I even had an older lady approach me when Glo was a couple of months old and told me I should be ashamed of myself, kids like her should not be in public.

Today she looks good but is frequently in the hospital with lung, kidney, or heart issues. We still average 2-3 appts a week(including therapies) and are hospitalized every 4-6 weeks.

I don't know how old your son is, but I find that the older my daughter gets it gets a little easier. Hang in there!

Nichole - posted on 11/02/2008

Hey there my name is Nikki and my son Dalton has spastic CP too. He is 2 1/2 and is not walking, talking or eating on his own either. I deal with the dirty looks all the time from the people that dont understand. Ive learned just to take a deep breath and tell myself that they just dont understand. Even though there are many many times when you just want to slap the hell out of them but it wont make you feel better because at the end of the day, you have your precious baby at home with you that loves you unconditionally and they have no clue that they have anything wrong and get through their life the best that they can. My son receives therapy 6 times a week and he hates all of it. Im a single mom and dalton is my first child. I was 22 when he was born, not what I expected to take on when I was 22 years old. But the love for your child exceeds everything! If this helps at all I'm glad. Feel free to get back to me whenever you can!

Mireille - posted on 11/02/2008

hi there. my 4 year old son was diagnosed with cp at the age of 23 months. he is stiff on his left side only, but can walk. he is behind cognitively and cant talk. i find it funny when someone says that kids can be cruel because in my experience with anthony its the adults that stare and assume he is stupid just because he is different. He has been in preschool for his second year now and will be goin gto kindergarten next year. the school we enrolledhim in has hired a teachers aid that is following him through the years. she is great. And since he has started school he has started to make noise and seems to try to say words... we are so excited.. though we are still keeping up with the sign language just in case. :) the best advice i have is hang in there. get your son involved in as many things as possible. and ignore anyone who might make a big deal out of the fact that your angel is different. When Anthony was diagnosed my husband put it awesomely. God gave him to us for a reason. And i don't know any moms out there who would trade their angels for the world. We are blessed to have them because we get to see the spirit and the heart that these little people have. They are amazing. Hang in there. If you need to talk, we're all here. :)

Nicole - posted on 11/02/2008

I also have a 6 year old son who was diagnosed with CP. Fortunately, he can walk and talk and there isn't any "obvious" differences between him and the other kids. He does wear an AFO brace on his foot and is fairly stiff on the left side. He is having some trouble in school and currently receives speech, OT, PT and special education from the school district. My biggest problem is they want to treat him differently from the others. At the beginning of the year, they were walking him to and from lunch, recess, and all his other classes. Unfortunately, anytime someone hears the words Cerebral Palsy, they think these kids are completely disabled and extremely mentally retarded. For all of you moms out there, stick to your guns about your kids. Make sure the school system gives them the chance to be as independent as you know they can be. I think we all would rather our children are given the opportunity to succeed rather than it be denied them just because of two little words. Anyone else out there have a similar experience?

Abby - posted on 10/30/2008

Hi, Crystal. I'm so sad that you feel so isolated and don't have support from your community. If your son is older than 3, you could consider putting him in a few hours of school each day. We put our daughter in school, initially just a few hours 4 days a week where she received a lot of her therapies and we love it. It has to be the right classroom, but if it's the right classroom, you'll get a lot of support from the teachers and therapists and eventually other parents. Our daughter is just in the public school but is the princess of preschool! ;-) I have had to work hard to get people to treat her more like an almost-5-year-old rather than a baby despite her significant delays. That will probably always be a struggle. Sometimes you have to just ignore the stares and take your kid to something "normal" like the playground. I find myself "interpreting" for Gracie since she can't talk, so that she can communicate with other kids. Probably sounds silly but it gets kids to talk to her. Just a few thoughts! :) hang in there!

Robyn - posted on 10/30/2008

Hi my son has cerebral palsy too, he's almost 2 and doesn't walk either. They think he will walk eventually, his CP is pretty mild and only affects his lower body. he goes to therapy at the public school and someone also comes here once a week. our insureance won't cover private PT and the speech he needs. The school has been great so far in helping us though.

I do feel like some moms judge me, but it's only bc they don't know what is wrong with him. I try not to let anything bug me. He is my special boy.

I'm here if you ever wanna talk!

Robyn

Stacey - posted on 10/30/2008

hey chick i am really really sorry to hear that u cant tlk to any 1 my baby has cerebral palsy n even no its the mildest u can get n u cant even tell the word has got around n people judge him too if u wnt to tlk just tlk to me my msn is staceyt14@hotmail.com