Saturday, February 9th, 2008
We want to hear
What have people said to you or child? I have found many different types of personalities in this world and it is quite fascinating to hear from them. Just when I think there isn’t a statement or phrase that I haven’t heard, I’m shocked once again! What stories do you have?
I took my grandchild to the supermarket. I didn’t have his wheelchair with me so I got the one they have in the store. He was only eight so the chair was really big for him. A man came up to me and asked why he was riding around in a chair, he looked fine to him. I told him “He NEEDS it he can’t walk on his own”. I will never forget that.
This is an amazing web site. We have a CD that we use in member services, called the 10 commandments of communicating with people of disabilities. It’s difficult to know what to say, but mostly like our Mom’s always taught us, unless it’s something nice don’t say it all. I wish you continued success in your pathways. Thanks for educating the rest of us along your way. Kindest regards, Margie
I just discovered this site when searching for “SDR Michigan”. We too are in Michigan and so I was especially drawn to reading every single item on this site. I cried as I read about Michael walking to get his diploma. I also realize I need to allow my son to be more independant, work harding with his walker, and especially work harder on the other things he needs to learn to do for himself if he is ever to become independent (toileting, dressing, feeding).
I would love to get in contact with you. Michael sounds a lot like Thomas. And I can only hope Thomas’ mom is as amazing as Michael’s mom is!
Hi – one of the most difficult things that someone said to me, was when a lady say that my daughter Sarah could not walk, she said: “Well, at least you won’t need to chase her away from the boys.” It was a haunting comment, so stupid yet painful in some ways. You have a great website… Very informative. It is featured on cpmom.com – but am thinking this is so useful I will add it to cpdad.com also. Keep it up.
Hi- I am so thankful that I stumbled accross this website. You are an amazing mom and one that a mom struggling to deal with her beautiful daughter’s CP needed to find. I too am in Michigan and my family is just beginning this CP journey of life. My daughter is 22 months old. I’ve have SO many people persecute me because I am a teacher and am still working, and not home 24 hours/ 7 days a week. What they fail to understand is that my benefits and pay help my family of three beautiful daughters and gets private therapy for Natalie at home.
Perhaps is can help take away some of the sting if you realize that the men who accused you of “riding” in the wheelchair and parking unnecessarily in the handicapped parking were simply concerned that those things were being used frivolously. We all know that people often do park in handicapped spots for their own convenience, and they do use the wheelchairs just for fun. We should all speak up when we see it. But if we all speak up, then sometimes – as in your case – the one speaking up will be in error.
Hi-I am a teacher but not working for last five years due to my cp child Hassan.people around me often comment that i have been punished by God for some reason.But i believe that God always selects His chosen people for harder tasks.i believe and strongly believe that one day my son will walk ,run and play normally with his elder brother.I am a determined mother and i will never give up.Being a muslim i strongly believe that my Lord will never let me down.
I was at church this evening…as you know, church is supposed to be a safe place, a place where you are not judged of your differences. My 4 year old daughter is not potty trained, that sensation is just not there for her yet. She is still in diapers and I have to use a changing table to make sure she is wiped clean. I have gotten comments such as “young parents are so lazy nowadays with potty traing” and so on… As I was finishing changing her (at a changing table right by the bathroom door, no privacy)an older lady was on her way out the door and commented to her friend and in my daughter’s direction “now that little girl is just too big to be on that table and in diapers.” it was heartbreaking for me and for my daughter to have to hear that. Thank you so much for making something that is already embarrasing ennough for the two of us that much harder. I pray that people would think before they speak, to realize that not all of us have “typical” children, but that some of us were blessed with wonderful little angels.
I have just read some comments i really impress, now come to the point. I have male child born on 27-09-2005 after 4 months we realise that he is suffering from Cerebral Palsy. Pls. Send me some tips. so i can treat him better than now.
1. He can hear good.
2. He can feel every thing whatever we are doing or going to do.
3. He is crying maximum time.
4. His Hands, Legs, Back, are not working, he is still not able to sitting, Walking, Standing.
5. He can’t chewing, we have to grinding all foods than he can eat. So pls. send some tips and every new news of this kind of childs information.
There’s nothing wrong with her, your just not pushing her enough.
Your just letting her get away with it.
Let her fall/choke/cry etc. She’s got to learn somehow.
You just have to make her do it.
Quit trying to help her.
She’s just a little behind, that’s all.
She’s just fine, she’ll grow out of it.
Your making a big deal out of nothing.
You need to quit worrying so much.
People will never understand unless they live it. I’ve always said I don’t want sympathy, but a little empathy goes a long way. When you see me lifting a wheelchair or trying to grab the door, help if possible without being asked. It goes a long way.
I was a young 21 year old mom who went to 3 different doctors in 9 months who said he is just “delayed”. The school sysem called one day. They get a list of preemie babies and offer to send it and pt to take a look. I said yes! The pt’s name was Linda. She was on the floor with him, playing with for awhile. I said what do you think. This lady is straight and direct. She said I’m no doctor. I said you’ve been working with children for 20 years what do you think? She said in my opinion he has cp. I didn’t really know what it was but I knew it wasn’t good. She looked me straight in the eyes and said, what he’s the same Michael he was 5 minutes. Those words set my attitude. Made an appointment with a neurologist who concurred. You have doubts, keep asking. Don’t be afraid as I know doctors are not perfect and they make mistakes.
Get him to a specialist who works with children like this. They should be able to put a plan in action. It’s and pt’s came to our house each wee starting at the age of 1 at 2.5 age he was put in a ppi class. The faster you get help the better your child will be.
I feel for you. I left my church after 20 years when daycare asked if I could leave my sons walker outside the room. Two parents were afraid he might bump them. One of those children was abiter and left marks on several children including mine. They did not remove her but they wanted me to remove my sons “legs”? I left and never went back.
My quote, “God never gives me more than I can handle and he thinks I am one special person.!”
I have a friend my age who looks completely healthy but has the pass. Why? She has a serious heart condition and can’t walk far. It’s not up to us to judge, though it is tempting!
I would love to get in contact with you. You are a beautiful mom with a beautiful perspective on life! Thank you for the positive insight. madeline.george@yahoo.com
I’m blind and have other disabilities due to being shaken as a baby by my biological father. I’ve been told that I can’t be blind because I’m able to feed myself. I’ve also been told that I have to be able to walk a little bit if I’m able to live in my own apartment. Another person said that I can’t be blind because I know my way around my home. One man tried to claim that he saw me driving a car but no one believed him. I used to let hurtful comments upset me. Now I laugh at them. I’m glad I found this site. Although I don’t have cerebral palsy I enjoyed reading Michael’s story.
Thank you. People don’t understand disabilities and how they vary from different individuals.
Sorry for the delay in a reply. Thank you for the compliment. Many individuals tell me they could never do what I do, but they can. When it is your child your perspective changes and there isn’t anything you would not do for them.
I am far from a perfect mom and I’ve made many mistakes along the way. I was 21 when Michael was born and he changed my direction in life. He made me a fighter and taught me to never give up. Feel free to mail me at this account and I will be more prompt.
Ann, I don’t think that ANY parent is perfect! We all do the best we can. I have 2 NT children with no disabilities, but I have 2 friends and a family member with autistic children, and my best friend in school has severe CP (can’t walk, talk, feed himself – but his smile lights up the room, and he can answer yes/no questions and laugh at my crappy jokes!).
You’re a brilliant advocate for your son, and always put his best interests first. That makes you a brilliant mum.