Sam is entering 1st grade this year, and we are planning on talking with the class about his DMD. Kris' office assistant's husband is a fireman, so we're going to go that route with our talk. My question is, when do we do this? Should we do it as close to the start of school as possible, or give it a few weeks to a month? I'm also trying to decided if we should have his twin brother in room when we give the talk. They're in the same class this year. We're going to take Sam out for the talk. Just not sure if Jake should stay.

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Hi Laurie,
Did you do anything for Kindergarten? Seph and Sam are the same age, but we held Seph back and he is just now starting. I mentioned it to his teacher and we are waiting to see if the kids say anything or 'pick' on him before we do it. I do have a question...how much does Sam know about himself and DMD? Seph won't engage in any conversation about his muscles not being strong, except that his legs get tired sometimes. I have attempted to engage the conversation, but no luck. Anyway, what are you going to say to Sam as to why he is leaving the room and/or about what the kids may say to him after the talk. These are my concerns, I can't imagine having a twin to to have to deal with a whole different set of questions whether he stays in the room or not!
Good Luck!
Lori
Laurie,
Ryan posted a link on the site to Jill Castle's website, it think it's under the education topic. Jill suggests talking to the class, so I imagine she would have some great input on this since she's done it before. Riley just started K and I have been debating whether to talk to his class or not at this age. I wrote a letter to the entire faculty about Duchenne and a personal 'About Riley' page for each of his teachers. I have spoken to his teacher and told her it was ok to answer questions about Riley and about Duchenne if students asked, but I am feeling that talking to the class about all of Riley's limitations will put a focus on his weaknesses instead of strengths. I think reading a book (like the Little Critter one) and opening a discussion about disabilites in general is a great idea! Just wondering...why take Sam out of the class? What are your concerns about this? I am trying to 'feel it out' too. I would appreciate any input from other parents since I have been debating the same issue.

Rhi
Hi Laurie,
My son Cole just started first grade this year as well. Cole turned 7 in July, so he may be a year older than Sam. We waited a year after he was eligible before sending him to Kindergarten. We're planning to talk to his class, but are waiting a few weeks for the kids to settle in. I spoke to his teacher before school started, and I think we're going to do a talk about differences in general, probably reading a book followed by a discussion. So it won't be a complete focus on Cole and DMD. He'll also be in the room.
In Kindergarten we didn't do anything, because I was worried about pointing out his differences if they weren't obvious. I volunteer at the school quite a bit and watching Cole it seemed he kept up really well with the other kids. No one commented or asked any questions to the teacher all year. But, toward the end of the year I was in the lunchroom and some kids started asking me why Cole was the slowest runner in the class. So it was obvious they did notice, even if they hadn't asked the teacher or commented in class. That made me feel we definitely needed to do something this year. I'm looking forward to hearing others suggestions.
Good Luck...Kim
Laurie,

My Sam is also starting first grade and he will be at a new school this year. Furtunately for him many teachers and kids already know him (and his story) because his 3 older siblings have been in the school for years. Last year his class was aware of his differences and they were very protective of him - reminding the teacher to use the slide to go downstairs instead of the actual stairs and helping Sam when he got stuck in a swing etc. They did not feel sorry for him, they were very matter of fact about all of it. On the playground Sam played football with the other boys, but the rule was that instead of tackling Sam they just touched him. Everyone understood the rules and it allowed Sam to participate safely. The kids all understood that everyone has their differences and that for Sam there are some safety issues. I spoke with Sam about talking to his class this year. I gave him several options - not talking to them, talking together, Sam talking alone or me talking alone. He wants us to talk to the class together and even thought about making a video (with his big brothers' help) to show the class. We will wait several weeks into the school year so that everyone has had time to make the adjustments. Jill Castle had some great ideas on this. I know that if you contact her she would be willing to share her ideas. I also plan to talk to the school and see if I can send out info to the parents in Sam's class as well. We have found that being open about Sam's Duchenne has been very good for all of our family. We feel like educating others takes the stigma and mystery out of Duchenne and helps everyone have the facts and be on the same page. Our community is already pretty aware of Sam because there have been several articles in the newspaper over the years about John running the marathons for PPMD. Everyone has always been supportive. I have found that the attitude our family conveys about DMD is usually what we get in return. We are very matter of fact and don't let DMD stop us.

Good luck!
Stefanie
Laurie, hoped everything worked out for you and the boys. I haven't said any thing to my son or his peers yet about his DMD, My plan is to tell my son as thing progress. His teachers's and some of the staff know, PE, Nurse and such, but not everyone at the school.
Here is a recent issue I have had.

My son who is 8 and still doing well but isn't strong exspecially when it comes to carrying a back pack, had to carry some heavy text books home yesterday and really struggled with it, so this morning I put them in a wheeled back pack. He came home telling me that on his way to the bus several teachers told him the wheels were not allowed. And not to bring it back.

Several key people at the school know of his DMD but not all the school staff does yet. Do I see if he can get text books to keep at home or have a note he hands to teacher's that says to contact me if they have issues with him having a wheeled back pack. My son doesn't know he has DMD yet. He does know that he has weak muscles but that's all. I do not want to risk damaging his muscles by carrying those text books. I did send an email asking the principal if I could get the copies of the text books to keep at home. Just wondering if any one has had to deal wtih these issues.
Last year, our son walked around the gymnasium with a classmate of his choice. The others ran laps around the gym while my son walked. He's now in the 2nd grade and 50% of the kids in his class this year were not in his first grade class. Anyway, his teacher told me today that some of the newer students who weren't familiar with our son wanted to know why he walks and doesn't run with them. She went to our son privately and asked him if she could explain to them why. He said no, he didn't want it discussed with his classmates. I need to talk with him and will ask if he wants me to talk to the class about DMD. He'll probably say no. He likes to be as independent as much as he can ( i.e. won't let his teacher carry his bookbag up 13 steps into his classroom for him but will ask his buddy Nicholas to grab the side of the bookbag for him) and doesn't like the DMD spotlight on him that much.

On Meet the Teacher Day, our son's teacher gave us an extra copy of his Social Studies and Language Arts textbook to take home with us. He has a rolling bookbag which you can hear bang down all 13 steps on his way out the door ( I heard it today while I was in the building) at the end of the day. Many of the staff laugh and say they know when my son is coming down the steps. Rolling bookbags aren't allowed in our son's school. There are only 2 kids with this type in his school. Our son is one of them. They are good to him and look after him.
Hi Laura....

I used the PPMD "Teacher's Guide to Duchenne's Muscular Dystrophy" and the accompanying classroom DVD. The DVD is very helpful as it simplistically explains what is going on in a child like fashion.

We do it every year for Harrison's class. If Sam is starting to fall or require assistance - in my opinion it is right to have the talk now. It seems the earlier his classmates are exposed to it - the better.

I find early in the school year is the best. Set's things off on a positive note. Before issues arise. You can order the materials from PPMD. Just email Ryan.

Wonderful stuff.

Hugs, Jeanette RN, MSN, CCRN
The first part of the year is what the Education Matters binder says in it. You can get it from PPMD.
I am in the same boat and I too have a son Tyler who turned 7 in July and just started 1st grade. I have decided to use the brain pop followed by Q&A time after and I asked said to Tyler casually that I was going to speak to his class about his 'muscles' and he could choose wether to be there or not. Boys at this age can be rough and he has been knocked over a couple of times by what would normally be inocent 'roughing' between boys so I felt it was time. I too am waiting a couple more weeks until everyone is more settled.
Thanks for all the input everyone.
Kim Eichelberger said:
Hi Laurie,
My son Cole just started first grade this year as well. Cole turned 7 in July, so he may be a year older than Sam. We waited a year after he was eligible before sending him to Kindergarten. We're planning to talk to his class, but are waiting a few weeks for the kids to settle in. I spoke to his teacher before school started, and I think we're going to do a talk about differences in general, probably reading a book followed by a discussion. So it won't be a complete focus on Cole and DMD. He'll also be in the room.
In Kindergarten we didn't do anything, because I was worried about pointing out his differences if they weren't obvious. I volunteer at the school quite a bit and watching Cole it seemed he kept up really well with the other kids. No one commented or asked any questions to the teacher all year. But, toward the end of the year I was in the lunchroom and some kids started asking me why Cole was the slowest runner in the class. So it was obvious they did notice, even if they hadn't asked the teacher or commented in class. That made me feel we definitely needed to do something this year. I'm looking forward to hearing others suggestions.
Good Luck...Kim
Hi, My son is a little older(10) and amazingly we have kept his illness quiet within the school with exception of teaching staff. Unfortunately his disability has become apparent and we are going to talk to his class too. We plan to take Nicholas out of class(or let him stay home). Our plan is to show them the kidsbop video and do the fireman boots or ankle weights and ask for volunteers to see what its like to "walk in Nick's shoes". probably will bring a sweet snack too. If your other little boy is aware of everything than it may be easier for him if he was there to listen too. As far as timing I plan to do before end of month. Its not an easy thing to do I am sure and I fear I could get choked up with all these 9 and 10 year olds staring at me. Any advice would be greatly appreciated. Good luck to you! Also I would love to know how it went and what the kids reactions were.
MaryEllen
My sons are a bit older, 16 and 14, and I've been talking to their classes since they were in first or second grade. The Brain Pop video was not available when I began talking to the students and it would have been a great tool especially for the younger students. I always kept the discussion at an age appropriate level and was there to assure the kids that my sons were no different and what they had was not due to something they did and DMD was not contagious. I spoke about how their weak muscles made them more tired and slowed them down. While they were still walking I explained this was why they were sometimes slower and to be good friends the students needed to understand and help. Each year I have talked with more detail, yet never over the heads of the students. My sons are always in the class and have not been embarrassed or felt odd. I don't getting bogged down in details about DMD as most kids don't really understand or really need a genetic lecture. It is more important to explain how DMD affects ability and how the other students can help.

One thing I have always done is to let the students ask questions. I have never had them ask anything that concerned long term prognosis in the lower grades or that was cruel. Mostly what they wanted to know was whether or not DMD hurt, would they grow out of it or what things my sons could and could not do. I always get some silly questions, but the teacher would give the kid who asked the question a look and that would stop! Another thing I found was making the kids aware increased their compassion and they all wanted to help or tell how they have helped in the past. In the winter my sons do not go out on the playground when it is snowy or cold and the teacher would pick a "buddy" to stay in with them. The students always volunteer how they were Matthew and Patrick's buddy during these talks.

I try to keep the discussion short as the kids get very antsy. While the boots are a good tool, I usually picked the smallest child and had him or her carry a bunch of books or wear heavy boots to illustrate to the others what it was like having muscle weakness. Having them all wear boots is fine, yet in a short time frame is best to avoid chaos.

Again, as the kids become older I talk more about what it was like having the disorder and how they could be helpful. Last year I spoke to one of Matthew's freshman classes. I explained how DMD for an older child becomes isolating and asked them to consider ways of including him. I spent less time talking about DMD as a disorder as this becomes less relevant and more time about how the boys are affected and what they are able to do and where they can use some help. Matthew had an end of the year get together for one class he was in and this also helped as the kids saw Matthew in his surroundings. Again, awareness is important and the students will be more helpful and understanding after the discussion.

Brian Denger
Hello all,
I've read at different points on this and the old board, that many folks have had the MDA come and talk to their child's class. Our son is in kindergarden, and we would like to do the same - however it seems as though no one from our regional MDA office has done something like this before. They are willing to do it, but I'd like to get some insight on what others have done. If you could pass along the email contacts to the person from your MDA office who did your talk - I'd like to pass them along to our office so that they could communicate with them and discuss how they go about things.

You can email me directly with this link email

Thanks
~Paul

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