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Old 12-22-2008, 10:24 AM   #1
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CP kids in grade school/feedback

I was wondering if anyone would share their experience of adapting to the school environment regarding CP issues (ie, social, motor skills, physical activities, teachers' willingness to work with special needs, etc.)
Our son has mild spastic digplegia and falls a lot. He also has a soft voice and may also have a mild case of Asperger's.
My husband likes the idea of private schools, because he thinks the teacher would have more time to help with a smaller class size.
I like the idea of public schools because of the PT services the school provides for special needs and because there would be a larger and thus more diverse group of kids for Noah to learn from and be friends with.
Any feedback would be most appreciated.
nwmom

 
Old 12-23-2008, 06:42 AM   #2
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Re: CP kids in grade school/feedback

I have a son with spastic cerebral palsy diplegia. He is also affected more on the left side, so it is like triplegia. He is now 4 and he goes to special education preschool. We recently moved, so he is now in a new school district. He is receiving O.T., Speech, and P.T. once a week from his school. When I compare his therapies from the last school to this school, I'm really not impressed. This school is horrible. I have actually filled out paperwork to be a volunteer, so I can help in his class because he is not getting what he should on his IEP. This school district has no money. We did research about the schools, and the junior high and high schools are great because of our older kids, but for our 4 year old, it isn't good. HE is also in a class that has some kids that are extrememly autistic. HE really doesn't belong in that class, but moving him out is just not an option right now. HE should be in a blended class next year, but we are working hard on the potty-training. We are hoping and praying that by the time he is going on 6, he will be retested, and be intergrated into mainstream kindergarten. He is so intelligent. He walks without a walker, but has a hard time keeping up with the other children when it comes to walking longer distances. He has also been diagnosed with nephrotic syndrome(kidneys) so the medication is making him so tired and MOODY(like he isn't enough already) I'm not giving him back his walker, because he will become too dependent on it. I know it may seem cruel, but I want him to build strength in his legs, and to build his endurance. He has been doing it for almost a year now without his walker. He is a determined young man. I know as he gets older, and has to move around more in school(gradeschool), he may have to use canes or go back to the walker. PErhaps in high school use a wheelchair. I'm not sure. It has been such a long roller-coaster ride. HE is an amazing kid.

 
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Old 12-23-2008, 06:48 AM   #3
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Re: CP kids in grade school/feedback

NW Mom,
I am also the mother of a (now grown) son with mild CP and a special education teacher. If you put your child in private school, the county still has to provide services, including PT, OT and speech. You may have to take him to wherever they are giving the services. I had good luck with putting my son in private school in high school and wish I had done so when he was younger. The classrooms usually are smaller and I found them willing to make accomodations for my son even in high school.

Lisa

 
Old 12-24-2008, 03:54 AM   #4
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Re: CP kids in grade school/feedback

We decided to send our 6 yo with mild CP to private school 3 years ago mainly because of the small class sizes and the personal attention. We have never regretted it--they watch out for him there the way a public school simply can't.

I strongly recommend private school if you can swing it financially.

 
Old 12-24-2008, 05:29 PM   #5
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Re: CP kids in grade school/feedback

Thanks so much--it's so great to hear from you all. I love this message board!
nwmom

 
Old 12-28-2008, 12:33 AM   #6
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Re: CP kids in grade school/feedback

Hello, I have spastic hemiplegia cerebral palsy. I'm a freshman in college and I went to public school my whole life. I think that public school was very accomidating to the things that I required. My parents had me set up with the schools special education program all throughout my public school experience, that was very helpful because the special education people alerted my teachers of any accomidations that I needed. For example getting an extra set of books so I didn't have to carry them around back and forth to school, I just kept the extra set at home. Also in elementary school there was a physical therapist that came to my school and worked with me one on one to work on the physcial imparments that I have, this was set up through the school system. My teachers were always very accomidating and understood. As far as the social interactions that I had in public school, I met some of my best friends there, yes there are always the jerks too but you get that anywhere. I wish your son the best of luck no matter where you decide to send him to school!

 
Old 01-05-2009, 02:12 PM   #7
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Re: CP kids in grade school/feedback

It may depend on where you live (we are in Oz) but I have done a lot of combing around to find an absolute gem of a public school. They are a specially coded pi school and have approx 850 students of which 70 are special needs, mostly pi. They have a strong therapy team and have a great attitude towards inclusive schooling. It also helps that their p&c is very active and so this school has many benefits which are mostly only available in private schooling. My point being if you are not able to afford private look around - because there are public schools which can offer a great education and remember... the teachers are taught the same, it's just where they end up that differs. And sometimes it is the teaching staff that make or break the school.

 
Old 01-05-2009, 06:31 PM   #8
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Re: CP kids in grade school/feedback

Karinsmum,
That sounds like a great school! By the way, what is pi and p & c?

And Leprechaunbaby,
I'm so glad to hear about your positive public school experience. Thanks for sharing.
nwmom

 
Old 01-13-2009, 11:27 AM   #9
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Re: CP kids in grade school/feedback

Hey all,
I am a proud mommy of a 3 yr. old with a mild case (so the docs tell me) of CP. I don't know much about it-I'll admit, I've been trying to do my homework. At the current time, my sweet boy goes to a private pre school tied in with his therapy. It's a drive (30 minutes) but I absolutlely adore the school. They have wonderful teachers. I have the great advantage of Medicaid paying for his schooling, that's so fabulous, so I guess I kinda get lucky.

After the pre-k stuff, I know he will have to be in public school, but he will be in the school I went to as a kid and teenager, it's a small public school, we were lucky to have basketball. The classes are small and I know the teachers. I just hope that some of you out there can be as lucky/blessed (which ever way you want to look at it) as I think I am.

-Emily

 
Old 01-16-2009, 02:07 PM   #10
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lotsofpractice HB User
Re: CP kids in grade school/feedback

There is federal and state laws to help you. The IDEA (Individual Disability Education Act.)

 
Old 01-17-2009, 08:47 AM   #11
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Re: CP kids in grade school/feedback

Our son also has a mild instance of spastic hemiplegia and is an intellectually gifted student. We had him in private schools for years and found that the response to his needs and disability varied greatly from one teacher to the next and depended largely on how the administrators did or often did not facilitate their understanding of the situation. Last year we even encountered a teacher who often refused to accommodate his disability because she didn't want fully abled children to feel that they were at a disadvantage. Yes, I know, that's an ignorant and nearly incomprehensible response to a disability but it was the reality we had to deal with. The truth is that disability laws have very little force in private schools and cannot be enforced unless you're interested in pursuing civil action. This year, we placed our son in the public high school and have a fully developed IEP for him. The IEP is a binding legal document that outlines to our satisfaction how his disability is to be accommodated and includes the provisions suggested by physical and occupational therapists and psychologists who work with disabled children. The school provides our son with an advocate who supervises the way in which other teachers fulfill the IEP requirements. It's wonderful. The public school system has been 100 times better at providing meaningful accommodations for his disability. Whereas I used to have to intervene frequently in the private schools to explain and advocate for my son, experts now do so immensely effectively and maintain frequent contact with us to make sure that things are going well. Frankly, one of the biggest mistakes we made as parents was placing our disabled son in a private school for so many years. If I could do it over again, I would place him in the public schools at the beginning. They provide expertise, insight, and have the resources to accommodate disabilities. Private schools eventually come, I believe, to regard disabilities as a nuisance they are ill prepared to deal with but they are nevertheless eager to accept tuition dollars. At least that has been our experience.

 
Old 01-18-2009, 03:20 PM   #12
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Re: CP kids in grade school/feedback

I think it's great that you got such a positive response.

 
Old 01-19-2009, 11:57 AM   #13
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Re: CP kids in grade school/feedback

Lotsofpractice,
I do, too! It's so nice to be able to learn from others who are in similar situations.
Thanks again,
nwmom

 
Old 05-28-2009, 08:03 AM   #14
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Re: CP kids in grade school/feedback

I was just reading through the post and would like to share. My daughter is now turning 12 and has been in public school since she was 3 (special ed pre school) She was born at 27 weeks, and when she was 10 months old we were told based on MRI she would never walk talk or do anything, she has PVL. We had her in aggressive therapy from the begining and she walked by herself at about 4 years old. Yes for distance and "bad days" she uses crutches or wheelchair. She has had 3 surgeries which worked wonders. She wears hinged afo's. mostly affects her left side mild on right.

Lauren taught the kids as well as everyone around her. She never let anyone tell her she was "disabled" she said she does everything just in a different way. I would go to the classroom when she was young and explain to the class why she wears braces and falls alot. I let the kids try on her braces, and ask any question they wanted. Lauren had many friends, but as kids get older things change. We faced middle school this year, and although she is liked by everyone, she is not always (almost never) asked to parties and get togethers. She goes without braces, which causes her more falling and leg pain at the end of the day. Kids are a bit meaner in middle school.

Despite this Lauren is extremly talented, yes she has drooling problems, but she has he voice of an angel. She gets on stage and sings, and has won in shows. She is also extremly smart holds a 98 average. Gym is our biggest problem in public school, she wants to try being in regular class, and for obvious resons doesnt work. So next year we will go into adapted gym. She also gets resource room, PT and OT.

 
Old 06-01-2009, 05:43 PM   #15
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Re: CP kids in grade school/feedback

Your questions is a very good one, and one our family struggled with when our son was small. We had a wonderful physical therapist and told her that we were thinking about exactly this question. She settled it in one conversation, by telling us that we really had to keep him in public school because they have a legal obligation to follow the disability laws (providing for IEPs, 504s, etc.), whereas private schools have no such obligation and can take whomever they like. They have to follow the accessibility codes for their buildings, but do not have to provide special services. While you might find a wonderful private school that is willing to take on your child's special needs, they are not obligated to do so. The public schools have to, and have more experience in dealing with these issues. The secret, of course, is that you have to be in a good school system that takes accommodations seriously. Some just try to do the minimum. We actually had to move to get into an excellent school system, but have never regretted it. Our son is now finishing his junior year, and he's had very caring support all the way through. He'll be off to college soon, having had a great start. Best of luck to you!

 
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