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PregowithTwins
My boys turned 8
Member since 5/11 2451 total posts
Name:
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CPSE meeting on the 17th---HELP
My son has MILD CP of the right foot but has NOT been FORMALLY diagnosed. He gets PT 2x week now but we are ageing out soon. He will be 3 in Oct.
We have our CPSE meeting on July 17. He really still needs to continue to have PT. We are so borderline that I think we will be cut on services because he did so well on psycholgical/social. OT he rec -1.25 below & was told need 1.50 to get services.
Does anyone have any suggestions on how to continue PT?? Should I get an advocate? Will that help?
If we use our own insurance for services, I think we will have to get diagnosis & really didnt want one since son is doing so well.
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Posted 7/9/14 9:37 PM  |
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marycpa
LIF Adolescent
Member since 7/07 635 total posts
Name:
Mary
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Re: CPSE meeting on the 17th---HELP
It would help if you got a formal diagnosis. They need to be able to classify him. I had issues with my son. They actually discharged him from CPSE and he had a lot if trouble in kindergarten. They only way I could get the services he needed was to get a medical diagnosis...which turned out to be adhd.
I know it's hard to label your child ..especially when he is doing so well but if he really needs PT, they are going to want a diagnosis.
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| Posted 7/9/14 10:19 PM |
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Re: CPSE meeting on the 17th---HELP
Posted by marycpa
It would help if you got a formal diagnosis. They need to be able to classify him. I had issues with my son. They actually discharged him from CPSE and he had a lot if trouble in kindergarten. They only way I could get the services he needed was to get a medical diagnosis...which turned out to be adhd.
I know it's hard to label your child ..especially when he is doing so well but if he really needs PT, they are going to want a diagnosis.
I agree with the PP.
DS just was discharged from all of his services for CPSE. He is about to start K.
We are doing the wait and see approach but we have had him formally diagnosed with ADHD as well. The school doesn't have to know, or, you pick and choose who you want to tell.
His doctor, as well as head of CPSE suggested having a meeting with the psychologist over the summer to give her the heads up in case anything comes up in the classroom so he doesn't get labeled as a bad kid by the teacher.
It's not a BAD thing to be able to get help for our children IMO.
More and more I have found as I talk about it, I meet parents that come out and tell me about stuff with their own kid.
I also have seen parents too who were in denial of issues, but that's another thread....
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| Posted 7/10/14 5:39 AM |
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iluvmynutty
Mom to E&M
Member since 12/08 1762 total posts
Name:
D
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Re: CPSE meeting on the 17th---HELP
It will be better for him to get a formal diagnosis this way the committee has a better understanding of what's going on. As for classification, at the CPSE level every child is classified the same "preschooler with a disability". Once they are school aged, the CSE must assign them a classification from a list of 13 possible choices (autism, blind, deaf, other health impaired, multiple disabilities, learning disabled, speech or language impairment etc...)
PT can be an easy service to obtain if the child is borderline because it all comes back to safety. The SD will want your child to receive it, it's the county rep that you have to convince. Just play up how his delays (gross motor, strength, balance etc...) impact his safety in the environment, impact is ability to play (playground equipment) and impact socialization ( at that age, kids play by running around, chasing, riding scooters outside...). Also speak to your concerns regarding having only 2 years to get hi ready for kindergarten. How will he be safe in that environment? Will he be able to climb up and down the bus steps independently? Negotiate stairs? Go up a curb? Participate in PE? Participate in recess on the playground.
Explain that although you are working on these skills at home, he needs such a high level of support, and isn't making gains in these areas compared to other kids his age. Also in 6 months he will be 31/2 the gross motor demands of that age increase tremendously. 6 months later at 4years they go up even more. Will the gap between where is is functioning now and where he should be functioning 6 months to a year from now close on its own? Probably not. Especially if he has an underlying reason for the delays such as CP.
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| Posted 7/10/14 5:58 AM |
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iluvmynutty
Mom to E&M
Member since 12/08 1762 total posts
Name:
D
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Re: CPSE meeting on the 17th---HELP
Also discuss all the medical stuff. Has he had an MRI? Which Drs are following him? Does he wear orthotics? It speaks to your involvement as a parent and identifies that there is cause for services. Scores are one part of what is used to determine qualification for services, functional ability is another. The safety risk with PT delays is usually what gets services for "non qualifying"students.
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| Posted 7/10/14 6:03 AM |
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PregowithTwins
My boys turned 8
Member since 5/11 2451 total posts
Name:
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Re: CPSE meeting on the 17th---HELP
Posted by iluvmynutty
Also discuss all the medical stuff. Has he had an MRI? Which Drs are following him? Does he wear orthotics? It speaks to your involvement as a parent and identifies that there is cause for services. Scores are one part of what is used to determine qualification for services, functional ability is another. The safety risk with PT delays is usually what gets services for "non qualifying"students.
Thanks Ladies.
The MRI was normal. We see Neurolgist Dr. Kharode. We have also seen 2x Dr. Silverman. No diagnosis was given because he is doing fine. Can walk, climb slide, up/down stairs basically do everything just at a snails pace. They feel its just tight achilles but he also has high tone in his legs.
Yes, he wears AFO braces. The PT working on balance now which is main issue.
Trying to delay with diagnosis because seems this disease is really growing with him. It's only his Right foot. 
I should note he cant sit properly because he cant hold his back up. He has to W sit which is bad. Cant take clothes on/off yet cause he will fall over. As well as shoes. He can't do shoes/socks.
Message edited 7/10/2014 10:02:00 AM.
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| Posted 7/10/14 8:53 AM |
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PregowithTwins
My boys turned 8
Member since 5/11 2451 total posts
Name:
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Re: CPSE meeting on the 17th---HELP
Posted by iluvmynutty
It will be better for him to get a formal diagnosis this way the committee has a better understanding of what's going on. As for classification, at the CPSE level every child is classified the same "preschooler with a disability". Once they are school aged, the CSE must assign them a classification from a list of 13 possible choices (autism, blind, deaf, other health impaired, multiple disabilities, learning disabled, speech or language impairment etc...)
PT can be an easy service to obtain if the child is borderline because it all comes back to safety. The SD will want your child to receive it, it's the county rep that you have to convince. Just play up how his delays (gross motor, strength, balance etc...) impact his safety in the environment, impact is ability to play (playground equipment) and impact socialization ( at that age, kids play by running around, chasing, riding scooters outside...). Also speak to your concerns regarding having only 2 years to get hi ready for kindergarten. How will he be safe in that environment? Will he be able to climb up and down the bus steps independently? Negotiate stairs? Go up a curb? Participate in PE? Participate in recess on the playground.
Explain that although you are working on these skills at home, he needs such a high level of support, and isn't making gains in these areas compared to other kids his age. Also in 6 months he will be 31/2 the gross motor demands of that age increase tremendously. 6 months later at 4years they go up even more. Will the gap between where is is functioning now and where he should be functioning 6 months to a year from now close on its own? Probably not. Especially if he has an underlying reason for the delays such as CP.
Thank you for such A WONDERFUL COMMENT. This will really help me.
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| Posted 7/10/14 10:00 AM |
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ChristinaM128
LIF Adult
Member since 8/12 4043 total posts
Name:
Christina
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Re: CPSE meeting on the 17th---HELP
Get formal diagnosis
And emphasize over and over and over again that he cannot safely navigate the school environment. With any issue, it really only boils down to either affecting learning or affecting safe navigation.
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| Posted 7/11/14 8:09 PM |
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PregowithTwins
My boys turned 8
Member since 5/11 2451 total posts
Name:
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CPSE meeting on the 17th---HELP
Well the verdict has been given. YEAH We got PT/OT 2x week 45.
I am so happy. They were more then willing to give. I didnt really speak at all. Services will go thru Kids Therapy
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| Posted 7/17/14 8:54 PM |
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iluvmynutty
Mom to E&M
Member since 12/08 1762 total posts
Name:
D
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Re: CPSE meeting on the 17th---HELP
Yay! That's great. We use Kidz Therapy in Hauppauge. I love my DDs PT, she's awesome.
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| Posted 7/18/14 4:57 AM |
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medikalmomma
LIF Adolescent
Member since 7/09 511 total posts
Name:
Kerri
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Re: CPSE meeting on the 17th---HELP
I'm so happy you were able to continue services! Thats great news! My son was a patient at the same practice and we had the same issue. They have told me numerous times that my son has cerebral palsy but won't make the official diagnosis. UUnfortunately, it caused us to lose services with EI. We are going through his cpse evals now, so I'm praying they are a little more generous.
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| Posted 7/20/14 4:37 PM |
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