Hi,
My son will be starting kindergaten this fall. His school prinicpal has asked for a letter from dr about the things he should not do and things he should do.
We have absoultey no idea where to start and also he will be the first dmd kid in the school. i guess dr wong will be provinding this letter.
How do we get the school work for my son's need?
I want them to provide PT for him. They said our school doesnot do that.
How do we ask for OT?
How do we ask for speech therapay?

Whenever we open the topic with school they say we will evaluate him in Fall.
I know my son needs PT/OT/Speech Therapy.

1) Do you think Dr wong specifies all this things? Do i have to specify all this in my email to dr wong to ask school to include these?
2) Do you think school will test him for learing disablities?

Thanks.
Amrit

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We haven't dealt with Dr. Wong since we're in Canada but we did order the "education matters" guide from here and that seemed to help some. We had an IEP meeting with the school and had everyone including Joshua's physiotherapist (who came in and taught the therapists what to do), the speech therapist, the occupational therapist, the resource worker, the principal, children's special services and both my husband and I. The therapists had already been working with him for 2 years so they were able to bring a lot of information to the table. My husband and I knew his limits and wrote out a list of questions and expectations that everyone went over. They also had a list that we were able to answer and discuss. I think the key thing is to keep an open mind and open communication with the school. Work with what they have and teach them what they don't know. In our case we were very lucky because our principal had a cousin who passed from Duchenne so he had some knowledge of the disease. Good luck and get as much support as you can on your side to educate the school.

Naomi
You need to coordinate with your school to have an Individual Education Plan (IEP) conducted. I am assuming you go to a public school, if not all bets are off, and private schools do not need to provide much. My son just finished kindergarten, and he had PT twice a week. The Physical Therapist came from another school, since they did not have one full time. He did not qualify for OT. Speech was only evaluated at the end of the year.
Request an IEP immediately, do not wait until the fall. Good luck
Yes, he will be going to public school. Thanks for the suggestions. I am really scared.
Hi Amrit. Before he can receive any services, I believe he'll have to have a comprehensive evalution done. This will evaluate him in numerous areas, including motor abilities and speech. After that you meet to determine his eligibility in the different areas and formulate his IEP from there. I would think the ideal situation would have been to have the evaluations done before fall so any needed services would be in place when school starts. I have no idea how these thing work over the summer. As far as the letter from Dr. Wong I'm sure you could ask her to include a recommendation for PT but I don't believe the school is bound in any way to provide it based on that. They still need to do there own evaluation and deteremine his eligibilty from there. When my son was diagnosed one of the best things I did was contact the Parent Training and Information Center in my state (IL). Every state has one in some form, here is the link to Ohio's http://www.ocecd.org/ocecd/index.cfm . They have parent educators and trainers who were able to walk me through the inital process of requesting an evaluation and provided me with accurate information and help with the whole process. They can also assist in providing an advocate if that should ever become necessary. The center in my area also offers workshops on IEP planning which I've attended and thought were helpful. Good luck, I know the whole process of starting school can be an intimidating one.

Kim
Starting with a new school is always very scary. Here is what we did. As far as letter from Dr Wong, that's the easy part. Dr wongs team is very good in getting the letters out quickly. Now as per the school, they do have to have their own evaluations completed before any services can be provided. They usually complete the evaluations by November, I think. So from Sep to Nov, I recommend worrying more about the things that school MUST do from DAY 1. For example, I was really worried for the PE and wanted to ensure that my son was getting either adaptive PE or no PE . Request an IEP ASAP and have a letter from Dr wong to especially focus on things they must provide from day 1. While formal PT /OT are important, they can be worked out once the school evaluations are completed. Following are of some of the things to consider.

1) School fire drills --special handling depending on how big the school is and what would be the best way to get the kids outside quickly

2) Play ground --if your son limits himself then great, if not you need to review the playground and restrict any activity like climbing on high bars etc

3) Restrooms-Doors- Use of common restroom is tough as it can get very crowded and as kids push each other, chances of falling are greater

4) PE --must limit activity to adjust per the kids abilities

5) Educating Staff- Make sure you educate(If you like MDA folks offer to come to school and educate staff about DMD) every single person that may interact with your son. Teachers(all - main, art, PT, spanish, search etc), librarians, cafeteria people etc.

6) Even if the formal OT/PT is not in place, ensure that they are making any necessary adjustments needed from day 1.

Good luck with every thing!

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