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Holly
March 15th, 2004, 08:23 PM
My daughter has ML II (I-cell) and is 26 months old. When she turns 3 she will be out of first steps which is a great program. My question is where do we go from here? I called the insurance company and they said she if she is able to go to the doctor then we had to take her to therapy which is 5 times a week. So I called the school and they can't tell me if they can come to the house or not but they provide 2 - 2 1/2 hours of preschool with therapy there. I told them that we don't get Brooke out very much in the winter because of all the illness. My husband and I work so it would be nice for Brooke and us if the therapy could be at the house. This world is not for the hard working family trying to make it with a special needs child. I need some input on where to go from here!!! I know I have 10 months but I trying to line things up now.

The Rea Family
March 15th, 2004, 08:33 PM
Holly,
I'm sorry that I don't have any advice for you, I just wanted to say good luck in getting any home therapy services.
I have been trying for over a year.
We live in the country, and no one wants to come here to provide therapy services.
Christopher has already been kicked out of 2 therapy places, because he gets sick alot, I don't know if this is part of the possible Morquio or if it is separate, but it would come on so suddenly, that sometimes we would have to turn around on the way there, and come home.
So that led to each place letting him go.
Maybe once we have a diagnosis, we'll get better results.
Sorry to get off topic.
Good luck!

ChrisMPS2
March 15th, 2004, 09:56 PM
Our Doctor always felt that between William's increased moucus production and the way he always had his hands in his mouth, he made himself a super highway for viruses and caught every bug he encountered.

Chris

Allimom
March 15th, 2004, 10:50 PM
Holly~
My daughter Allison(MPS 1) just turned 3 on Feb. 5th. We ARE recieving school services at home! It was a push to get the therapies, but Alllison's Dr's wrote a letter requesting HOME based services and listed some medical reasons why. I pushed for the home based services for almost a year, so when it came time to write her IEP, everyone knew what I wanted for Allison and was prepared to tell me what they could do. Alli gets two hours of therapies per week. One hour of speech and one hour of either PT or OT. ( We alternate the PT and OT every other week.) The only down side is they can't seem to come up with a regular schedule, they usually call me the day before they want to come, and I just have to accomodate them.

Good Luck!
If they can provide home-based services in Bismarck, ND...they can do it anywhere! Keep pushing MOM!

Jennifer

zachiesmom
March 16th, 2004, 06:27 AM
Hi Holly, :)
I bet Jessica may have some info for you about your state but I agree with Jennifer, just keep talking with your doctors about it so that when it comes time to do your IEP they will know what your expectations are.
My son has ML ll/lll, he kind of fits right between the two and has more physical characteristics of ll so he desperately needs to have PT on a daily basis but he was getting so "anti-establishment" with home based therapy that we opted to try him at school instead and that has worked out very well for us, he no longer makes such a fuss about the therapy and he actually loves it now. BUT, we too have a hard time dealing with all the colds and viruses. He seems to be sick 3 out of 4 weeks a month because he just can't lick anything! :sick: He's actually been home sick for the past two days with a fever and is already becoming very stiff from the slower pace here at home so we put up with that for now but I don't know how long we'll be able to.

You know your child better than anyone else so if you believe it is too risky for her to be at school and costantly fighting something then don't let anyone force you into that, she has the right to recieve therapy in a safe enviroment for her specifically and every state must abide by the laws to handicapped individuals and their rights, they just need to be reminded that we as parents know that!!!! :wink:

Good Luck and just keep bugging anyone who'll listen!!! :8):

Keep us posted, Brenda :)

Jessica
March 16th, 2004, 09:28 AM
Hi Holly!
Kaity attended school once she turned three. In Indiana it is required that the state provide pre-school for special needs children at that age. Call a counselor or special ed teacher at any elementary school. They will have the information you need to get started.

I donít have a lot of experience in this area because I started Kaity in pre-school at the age of three and I took her there everyday. She went from 8am to 1pm. After she was old enough then she went to kindergarten and on to the first grade.

Unfortunately, she was getting so ill while at school I pulled her out. The teachers then instructed me that they could come to the house if I wanted them to and by law they had to provide that service.

Things have changed somewhat (for the better) so Iím not sure if the state will allow home school at the age of three, or make you wait till kindergarten. My best advice would be call any school system in your area and ask around. If I could do it all over again, I would have kept Kaity in pre-school with the other children. She was very social and enjoyed it very much. As she got older though and became sicker, I was glad I pulled her out of public school. She was so sick all the time and when I pulled her out, her illnesses virtually stopped.

~Jess

MelI
March 16th, 2004, 09:03 PM
Jacob is 3 1/2 and receives his school at home. He is immuno-compromised due to his transplant and our doctor just signs a form that the school provides that says he can't go to school. Our state law (Washington State) requires that at the age of 3 Jake gets schooling so the elementary school is required by law to provide it to him. Anyhow, Jake gets 90 minutes of Education, 90 minutes of OT, & 60 minutes of Speech per week in our home through our school district. His Birth-3 (I think what I call Birth-3 is similar to your First Steps program) Case Manager (Family Resource Coordinator) arranged our first IEP/transition meeting prior to Jake's 3RD birthday so I didn't have to make any calls or figure out what needed to be done. Hope this helps a bit!

Take care, Melanie
http://www.caringbridge.org/wa/jacobirish

Holly
March 17th, 2004, 12:39 PM
Thanks so much for your replys. Only people on this forum understand what we parents go through. I called the preschool teacher and the director and no one cane give me a straight answer. I think a letter from the doctor will really help. Thanks again :)