I am currently training to be a nurse. I am studying cerebral palsy, and would be interested to know of the sort of problems and prejudices sufferers of this condition can encounter.

...........

Well my daughter is too little to see it (she's 2 1/2) but I've had salons refuse to cut her hair because she's 'special'. Now my spoiled little girl goes to JC Penny Salon and gets a $30 haircut (and style). After I told them what happened at other places, they take the time with Sarah so she doesn't cry (she cries if her head gets touched a certain way because of a sensory issue) and they bribe her with candy, just so she feels good. In a sense, its well worth all the extra money on her hair.

I haven't experienced any real prejudice per se but I think the medical field kind of writes these kids off since there isn't any real treatment. For instance we just had a baby with a cleft palate. The response has been wonderful. We've been told exactly who to see and what to expect and there has been a clear definition of what will be done. With my daughter with CP no one really seems to know what to do. PT,OT,Speech, and Pray......It was hard to even get initial visits organized. that part is a little frustrating.

jlweissmi wrote:I haven't experienced any real prejudice per se but I think the medical field kind of writes these kids off since there isn't any real treatment. For instance we just had a baby with a cleft palate. The response has been wonderful. We've been told exactly who to see and what to expect and there has been a clear definition of what will be done. With my daughter with CP no one really seems to know what to do. PT,OT,Speech, and Pray......It was hard to even get initial visits organized. that part is a little frustrating.

Its hard to get things taken care of. When my daughter was born, we lived in Iowa and everyone was great about getting everything taken care of. When we moved to Florida last summer, it was very hard. Luckily, I knew what Sarah needed (from what she was getting in Iowa) and fought to get those same services in Florida. It was very very frustrating. I can't imagine if Sarah was born in Florida. I don't think she would have gotten all that she needs.

Recently my 9 year old daughter has developed separation anxiety and already had chronic fatigue. When we try to adjust her time at school up or down for what she can tolerate we are told we babying her and she needs to be there all day no matter what for social development. A Neuropsychologist recently told us at just the initial meeting of Mary that social skills will be a challenge no matter her time at school because of the severity of her stroke. in his opinion the school whats to overwhelm Mary so she can be more "normal"! She is doing the best she can isn't that enough!

John Runer

I homeschool for a reason. Public schools get funding from the government period. They don't necessarily care about what each individual student needs, they just want them there so they can count them for their funding. They also want to make it as easy on THEMSELVES as possible and not necessarily easy on the student or family.

Honestly, you need to be your child's advocate and you shouldn't tolerate what the people at school THINKS you ought to be doing. You know your child best and you need to do what is best. Do you have a 504 in place at school? They certainly need one, this is a binding legal document that the school must adhere too. And if she can only tolerate it for x amount of hours then she can only tolerate it for x amount of hours and there is nothing that the school can say about it.

Sorry if I sound so harsh, but public schools makes it doubly hard on our kids that have life threatening conditions like Type 1 Diabetes.

I will be hopping off my soapbox now, and going in search of chocolate....but let me know if you need help with a 504 and I will certainly point you in the right direction.

I agree with liz somewhat. I'm a public school employee so take it a little easy on us free loaders

Schools do want to count the bodies and teachers are human and do try to make things easier on themselves however I do know that as a parent I tend to error on the side of making my daughter comfortable. As much as I like to think I push her I also give in more than the therapists and teachers. My mom went to school with my daughter and didn't like the fact that the teachers kept pushing my daughter even after she started getting upset. At first I was pissed but then I realized that it was really only for a few minutes more and it didn't stress her too bad. My hope is it will build her tolerance. So YOU have to help everyone find a balance. Social interaction is important but too many educators put too much emphasis on that if she is interacting with other adults (teachers, aids, bus drivers, etc.) and students (special needs and others) at all it's a good thing. There is a diminishing return there eventually.

If you feel that all day is too long don't let her go all day...I'm not sure about what the school has to provide as far as travel arrangements in that circumstance though. 504 plans are good but she really needs an IEP as stated in another post put everything you can in there even if you don't follow through the school is bound like Liz mentioned. Here's what they don't tell you....you can change it ANY time you like it's all up to you. They will probably try to guide you and I've gotten a little heated in some of our meetings as a parent. So make sure you stick up for your family. I do know that my daughter comes home from school happy...usually tired but happy and she continues to improve so I'm thankful, even if they get her worked up once in awhile.

Jlweissmi, I am so sorry if I offended you in any way. I have a really bad habit of typing without thinking sometimes.

And you are so correct it is an IEP for this side. See my son is Type 1 Diabetic, and so on "that" board we always talk about the 504 which is what "they" need.

So sorry, I did not mean to step on your (or anyone else's reading this that works for the school systems) toes. ((((Big Hugs)))) sent in friendship.

I agree with the both of you guys. Its hard for other people to treat our children the way we do. When Sarah cries, I run to her. Even if she's crying because she's mad at something (and not because she's hurt or in pain). When she goes to her pre-school, sometimes she whines and they just let her whine. At the begining I used to get upset about this, but I saw that as they let her just whine, it pushed her to be a little more independant. She stopped whining and tried to do what she wanted to do (get closer to a toy or go to another part of the room). She's been at this pre-school since Jan and I can see tons of new improvements with her social and motor skills. I always felt bad that she got upset when she couldn't do something so I would bring it closer or do it for her, but I found that this is actually hurting her instead of teaching her to try to do something for herself.

Liz no biggie. I'm not offended very easily. I have been frustrated with some of my colleagues esp. in the special ed departments and some of the therapists. It has definately opened my eyes. I've often heard them complain about pain in the A parents but no wonder they make us jump through so many hoops and fight for our children I think it automatically puts us (parents) on the defensive after awhile.

Thanks for sharing nothing but love.

I appreciate everyone here so much for your great ideas and the passion you have for your children! i have an advocate and have been learning how to fight the system for my daughter. We will be amending her IEP as soon as we get two more reports, if that doesn't improve my daughter's experience at school that I will home school her. I am in Idaho so any others that homeschool with or without duel enrollment are invited to respond.
Thanks'

John Runer

I have a five year old in a kindergarten/preschool special needs class in Montana. What I have found is that her special needs class is great! They are adaptive and always trying to work with our family, the problem is her kindergarten tetacher, she is always trying to find a problem with Allie. She thinks she has ADD so wanted her medicated, when we told her that wasn't going to happen because she is already on seizure medication, she then decided that she has a vision problem. Well we have her vision tested every year and it is fine. She is terrified that she might fall at school so she won't allow her to go to recess if it has snowed or might be slick. She is very hovering and it is stifling my daughter. She does not want our daughter to be independent and we have gotten into several heated discussions with her and the school. We have talked to the school administration and they aren't much help. We are starting to think about home school for her.

My son Alec, is 7 years old and has Athetoid CP. Though physically he is very limited, intellectually, he is advanced. He is verbal, though he is not understood by many due to the degree of his disability. He attends a school in our area that specializes in educating physically challenged and intellectually challenged children. Recently, Alec expressed a great deal of interest in attending school with his three brothers, including his twin brother Bryce. They attend a private academy. I met with the Headmaster who seemed very uncomfortable when my husband, our son, and I entered his office. We informed him that we wanted to enroll Alec in the regular education program at the school. During school hours, he would have a therapist with him at all times to assist him with his physical needs as well as assist his teacher in understanding what he is saying. He gave us the paperwork and sent us on our way. I received a phone call from the Board of Education president several weeks later and he informed me that Alec would not be permitted to attend their regular education class due to the degree of his physical disability. I was told that his "attempt to communicate" would be too much of a "distraction" to the other students. The only way he might possibly be allowed to be in a regular education setting is if we purchased a augmentative communication device for him. Otherwise, if we still insisted on sending him there, he would be placed in a class with intellectually impaired children. I have no intention of purchasing a communication device for my child who is verbal. He has a voice and wants to be heard. When I asked Alec if maybe a communication device was something he wanted, his answer was, "Absolutely not mommy. I talk just fine." We are considering taking all of our children out of this school. I do not feel that my children should be attending a school that views children with any sort of disability as a "distraction."

Luvmy4boys, when I read your post I just wanted to do physical harm to the principal and to that school board. UGGGG!!! Where do they get off saying that?!?!?!?!

I hope you find a better school where ALL of your children can attend and be able to learn to their fullest potential.

And when your son is grown and successful, be sure to write this principal and school board people and let them know.