Cerebral Palsy and 5 Yr Old Boy

Updated on April 06, 2008
J.A. asks from Frisco, TX
13 answers

I am looking for opinions, I have one of my triplet boys and he is 5 yrs young and now needing to change from ppcd ashe turns 5. He is not ready for kindergarden as he is no where near being able to talk/communicate or walk. He is however very smart (being my son), lovable and can communicate so well that we are all wrapped around his finger. he can climb, cruze, uncoordinated in a walking frame but likes to use it! says bah! bah! for everything and eats well - blended food ( bites people affectionately but does not bite foor).
I have to make a decision as Special ED (school system) with 5 other kids A LOT WORSE THAN HIM BUT ONLY 5 (so 2;1 ratio which of course is good). Or what to do - stay at home, cannot afford full time help to program him and do not have the knowledge to keep up with the school system! Any suggestions from anyone. I know it is long but I am pretty desperate.

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A.A.

answers from Dallas on

What about something in between? Will he have opportunities to interact or to be included with non-disabled peers? You might want to join the Council for
Exceptional Children. It is an organization for parents, teacher, administrators, and others who are advocates for children with special needs.

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L.D.

answers from Dallas on

J.,

I teach children with special needs on the middle school level and completely enjoy the job. I have two children with cerebral palsy in my classroom. The children in the public school system have a lot more services than home schooling. He could qualify for speech, physical therapy, occupational therapy, etc. with the school system providing those services. His language has a better chance of increasing the more people he is around where he needs to make his needs known.

Talk with the school where he is to ask them to help you. They will guide you through.

L.

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N.M.

answers from Dallas on

Hi J.,

Before staying home with my kiddos I was a PPCD teacher. I just wanted to tell you that a good special ed. program will be tailored to fit the needs of each student. So even if the students in your son's class are lower functioning than him, it doesn't mean his needs won't be met. If you are concerned, ask to talk to the teacher and she can explain to you how she handles this.

Sounds like you are a great mom and researching your options. If David were my son, I would put him in special ed. There is only so much that we, as parents, can do for our kiddos. But those teachers have the training to help David fulfill his potential! I don't know about the special ed. programs around here, but the teachers I met had a passion for what they did and an immense capacity for love!

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A.M.

answers from Dallas on

Just from my experience with school district's and their "special needs services" -- they tailor each child's education to his/her own goals. So once you enroll him, you'll have a meeting with the therapists and teachers to discuss their suggestions on what his goals should be over the year. And they'll work on that and report back to you. They'll document it on the 6-9 week progress reports, but they'll most likely communicate with you more often if you ask questions/email them.

and like the other poster said, these are professionals that have been certified in their field. and experienced. They understand each child is on a different path at a different pace, especially those with special needs. They will work with you on all his needs... and learning.
His kindergarten class will be on his level and they won't expect him to be on the pace of a typical kindergarten class.

fyi: The districts usually offer preschool through the ISD for special needs children (ages 3-4 only)- to prepare them for kindergarten. FREE tuition for that preschool if he qualifies as having special needs.

G.W.

answers from Dallas on

Hi J.,

I am not the mother of a special needs child as you are so I can't say I know at all the struggle you're having in your decision regarding your son David and the best way to educate and further his progress. I wanted to offer you some encouragement though when it comes to depending on the public school system for support. I have my degree in Elem. Education and have taught normal classes. I have had the opportunity, however, to work on several occasions with special education classes like you are describing and I have been so impressed at the diligence and love I've seen special education teachers show to their students. I think we are blessed to live in a country that doesn't see these children as "throw aways" and just institutionalize them as so many others do. On the contrary, we pay taxes to a government that believes the special need children and adults of this nation have the same rights as healthy minded children and shows that through funding excellent programs and classrooms to see these little people reach the highest potential they can. So, I say, go for it! Put him in, give him a chance to socialize with other teachers and children, let him be introduced to new therapies and programs that these highly trained teachers will know about. It would probably do so much good for you as a family, too, to know that you are giving your son a chance to experience a little piece of the world outside of all of you guys.

My sister has a very special needs child, too, not CP, but she is and always will be considered MR and will never be able to live independently. She will not officially be ready for kinder until the next year but has been doing preschool through the Easter Seals. My sister says it has been such a blessing, they do so much with Abby, things my sister could never have enough patience for.

Best wishes with whatever you decide, just remember that old phrase, "it takes a village to raise a child" - that is true for special needs children, too. Build a great relationship with your child's special needs teacher, and you will be so happy with the decision to share him with others that will help him and you, too.

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R.H.

answers from Dallas on

I have a son who has CP as well. Since your son is in PPCD and "in the system" talk to the school about your concerns. Ask to have an ARD if you have to, to plan the next school year. There are many state laws in place to protect and help your son's education needs. I substitute for LISD and each child with special needs is at their pase. I know you may have more questions or just an ear, email me.

Part of the reason I do not homeschool is if I pull my son out of Public School and have to return later, the fight to get what he needs may be harder because he was pulled from the system. Good Luck

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L.D.

answers from Dallas on

I have a son with Down Syndrome. What we did was to have our son do half a day with PPCD and half a day with kindergarten. Then the next year we went on to kindergarten. Our goal was for inclusion and still is. So it kind of depends on what your goal is.

L.

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J.M.

answers from Dallas on

Hi J.,
I know the thought ouf your little guy going into a class with other kids who are more severe than is tough. Did you have an ARD to discuss placement? If he has medical needs, then sometimes classes like these are needed to meet those needs (ie feeding, positioning, diapering). But I hope the team is also including some time is the general ed classroom, for circle time, music, resess . . .You did not mention what his educational strengths are but I would push for as much time in general ed for these areas of strengths maybe some resource time for areas of weakness. And maybe just the special ed classroom you mentioned for those areas that cannot be addresses in other settings.
I do not know of any full time programs. I hope you are able to come up with the best plan to meet all of your sons needs. I suggest you meet with the elementary school special ed team to discuss all your options.
Best of luck,
J.

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H.B.

answers from Dallas on

Hello J.,
My son is 6 years old and in special ed. He has a syndrome called Ring 18 and was preterm at 32 weeks. He is mentally retarded, developmentally delayed, stil in diapers, eats pureed foods, scoots around, walks in a walker, etc. He has the sweetest smile and laugh. At first when we put him in special ed at age 3 years, the therapists, etc wanted him to go to the non-mobile group. Kids were much worse off than him. I told them no and that he will go into the mobile group. He did fine. If that worries you, then insist that he be moved to another class/school with kids more his level. If they refuse, see how he does for 6 weeks and go from there. We are in the Lewisville school district. You did not mention what school district you are in. Andrew right now is in a class where he is more in the middle. He has done well. Remember, that you know your child better than the teachers/therapists. I have protested at ARD meetings when I felt that he was not getting what he should be getting. Let's say I have intimidated a lot of people. They expect parents to follow their lead, which should not be the case. So go with your gut feeling and hang in there. Our special kids need us and we need to fight for them and what is best for them. Good luck!!

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K.P.

answers from Dallas on

Hi,

Where do you live? We live in Frisco and love the public school system. My son is a cancer survivor and has developmental delays. He is most like someone with cerebral palsy. His brain is intact, but his coordination is not. He is almost eight years old and walks with a walker. He started using it about three years ago, when he was five, but he could only walk about ten feet at first. He has done so well at school. I stayed with him the first five years of his life because he was sick all the time. He has been in school full time for two years and is making HUGE progress. I would recommend that you DON'T stay home with your son. They can become so dependent on us that it hurts their progress. They need to be around other adults and other KIDS. Be careful, however, that they don't put him with kids that are "severe and profound". This is where we started because Ian didn't walk, and it was awful. Your son does not need to be with kids whose brains are not functioning well. My guess is that your son will learn to talk, read, use a computer, hopefully write, walk at least with a walker, and make friends. He just needs a little help that you cannot provide. Also, tons of money goes into special education. The public schools can provide free physical, occupational, speech therapy to your child.

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C.P.

answers from Dallas on

J.,

I know Boals Elementary and Pink both have good programs for special ed children. I have a friend who has her son at Pink and she really likes it. You could probably go sit in one of their classes and talk to the Principal to see what they offer. I had IVF x4 and got twins! Good luck. I hope you find a program for him.

C.

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D.B.

answers from Dallas on

Please read the following website: www.familyhopecenter.org

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B.F.

answers from Dallas on

Hmmm, you have an excellent question. If you don't send him to the special ed program at the public school what is your other option?

I am a homeschooling mom, so I understand when you say you feel inadequite (no, I can't spell) for the task. If you want to consider it though, please look at Frisco Home Is School (www.friscohis.org) and see if they offer any support groups for families of special ed kids. I think we do. Since I have more mainstream kids I have never looked into it, sorry. Also, why do you have to "keep up the school system?" That's exactly why I took my kids out, my son was being dragged along year after year, earning a passing grade in math but unable to do simple addition. The school system will get your child through. But the question is will he truly be learning?

I understand if you don't even want to consider homeschooling, its hard for us mom's of your average students, with special ed I imagine there is a whole new dimension of problems added to that. But consider it, it may actually be what is best for him, at this stage in life. Or maybe going to public school for a few years then home is best, or even just stayinig in PS.

Good luck in your decision though. You will be in my prayers.

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