Yesterday during our 4th celebration, our son Will, was trying to keep up with the other kids biking, scootering and skate boarding. One of the kids asked me - in front of Will, age 6 - what is wrong with him. I responded to them that his muscles are different and that he is doing well. It just breaks my heart to hear them ask this question. AND, these two kids (cousins of Will) have asked this question before...and I have told them before that he has different muscles. I have also talked to the parents and asked them to explain. So, just looking for ideas on how to handle....
Thanks.
Char - Will's mom

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hi Char,
First of all im a mom of a 23 yr old with dmd so i so know how you must of felt hugs to you and your son ! I use to explain depending on the age i think you did good i use to just tell them his muscle are weak and not go into to much detail dont want to scare other kids or your son I remember when people would stare and parents would whisk thier kids away and i would niceley say it ok and give them a brief explanation but to this day i get annoyed when adults stare infact i got tired of i even bought him a t shirt that says if ya stare long enough i might do a trick just to add a little comedy !

Diane Spiess
Hi Char. Sounds like you handled it well. Keelan is just about 2 and I had an adult stranger as why he was so small, if he was a preemie, why he had such trouble walking, if he had problems at birth like CP! I almost fell off my chair! I told her (since she was an adult) that he had DMD, and when kids ask I tell them exactly what you did. Hopefully the parents will try to prepare the kids before the next visit. This is timely since I was logging on to vent about how upsetting it was for me this weekend to see Keelan trying desperately to keep up with a bunch of other kids ranging from 2-5. I KNOW it's harder on me than him at this point, but it really bothers me. There's a whole group of us that had kids at the same time and I'm at the point where I see all the other kids reaching milestone, walking, running, talking, and Keelan frustrated. It's breaking my heart. I am kind of pulling away from my friends with kids Keelan's age because it's getting too hard for me, and I know it's not fair to Keelan or my friends.
Hi Char!

I find myself in this situation a lot! Jakes good friend Bri (5) is a fast kid, and always encouraging Jake to run with her. Poor Jake gets so frusterated. I told Bri, in fact just this morning, Jake is doing his very best to keep up with you, and as long as he is doing his best and having fun, then that is all that matters. And Bri agreed;) I hope you are having a great summer!

Love,

Mindy
Hi Kathy,
Thanks for the info. One thing I will share with you is that for awhile, I thought our son may be mentally behind. However, I think that our boys develop neurologically more slowly...I know that there is some delay in process auditory information. What I really wanted to tell you - is that you will be surprised at what your son will learn and how he will continue to grow. He may miss milestones but just remember, he will get there....Our little guy knows his alphabet, knows the sounds of the letters, can count to 100, and is beginning to learn to read. So, while he may not have the greatest gross motor, he will surprise you in other ways.
Thanks for the encouragement.
Char

Kathy said:
Hi Char. Sounds like you handled it well. Keelan is just about 2 and I had an adult stranger as why he was so small, if he was a preemie, why he had such trouble walking, if he had problems at birth like CP! I almost fell off my chair! I told her (since she was an adult) that he had DMD, and when kids ask I tell them exactly what you did. Hopefully the parents will try to prepare the kids before the next visit. This is timely since I was logging on to vent about how upsetting it was for me this weekend to see Keelan trying desperately to keep up with a bunch of other kids ranging from 2-5. I KNOW it's harder on me than him at this point, but it really bothers me. There's a whole group of us that had kids at the same time and I'm at the point where I see all the other kids reaching milestone, walking, running, talking, and Keelan frustrated. It's breaking my heart. I am kind of pulling away from my friends with kids Keelan's age because it's getting too hard for me, and I know it's not fair to Keelan or my friends.
Hi Mindy,
It is great to hear from you. I was just thinking the other day that I needed to meet with you, Paula, Janelle,etc. I don't have any DMD friends here in Seattle and it's lonely not having any. If you all do something, please email me.

Hey if you guys come up to Seattle Children's, you are welcome to come and stay with us. We have an extra room and we are literally right down the street.

I just get mad at adults and kids that don't get it....I suppose I didn't know what DMD was either at one time.
I think this year, when Will goes into 1st grade, I may ask his teacher if I can come and talk to the kids about his DMD - weak muscles and use the spaghetti test - one bowl with glue in the spaghetti and one without.

Anyway, big hugs to Jake!
Love,
Char
Melinda Colby said:
Hi Char!

I find myself in this situation a lot! Jakes good friend Bri (5) is a fast kid, and always encouraging Jake to run with her. Poor Jake gets so frusterated. I told Bri, in fact just this morning, Jake is doing his very best to keep up with you, and as long as he is doing his best and having fun, then that is all that matters. And Bri agreed;) I hope you are having a great summer!

Love,

Mindy
Char, you handled the situation perfectly. I appreciate you sharing the story, Will is about 4 1/2 years older than Wyatt and things that he's experiencing now, Wyatt will be experiencing down the road. When you post your stories I know it will help me and Wyatt in the future when we are faced with the same situations.

I just ran into a situation today that really got me thinking. Wyatt is still very young (16 months) so I don't have any adults asking me questions about walking, running, etc But just today I was taking my 15 year old daughter to the DMV to get her learner's permit (now that's a story in itself, yikes, I think I scared the kid into never wanting to drive again). There was a young woman there (19 I think) with her 8 month old daughter. My daughter and I were admiring how cute this baby was. And I made the comment, "Oh she's about the size of Wyatt." This other mom immediately said, "How old is he? Was he a premie?" Wyatt was not with me at the time, but I get the premie question all the time. He's small only about 18 pounds (weighed 8.5 lbs at birth) but why do people, adults, always want to know "What's wrong!"

Then when we got home my 10 year old, Travis, says to me, "Mom the neighbor girl across the street wanted to know who Anthony is." (he's my 12 year old, he has asperger's syndrome - autism). Travis then says, "That's my brother Anthony!" She says, "Oh he's a nerd!" So then Travis walked away.

He then reminded me of just how hard it's going to be for Wyatt. He said, "Mom kids are always going to make fun of Anthony and Wyatt, huh? " He's 10, what in the world do I say to him? How do I help other children and adults for that matter who are going to meet Wyatt down the road see him for who is his, not what the DMD has done to him. He is so young now and I should enjoy him and worry about the DMD later, but that is so hard to do. He is growing everyday.

Thanks for listening to me vent. I really don't have anyone in my life except my husband who knows what I am going through. Take care everyone. Melissa
Melissa - Thanks for your comments. The main thought that comes to mind when I read your comments is that it's our job to teach others including family - to respect others for who they are and accept them with all their differences. Everyone is given special gifts. I try card to stand up and explain the DMD. I am not one to be outspoken but I am learning....Big hugs to all your kids and you. Wyatt could have a better mom than you!
Char Burke

Wyatt's Mommy, Melissa said:
Char, you handled the situation perfectly. I appreciate you sharing the story, Will is about 4 1/2 years older than Wyatt and things that he's experiencing now, Wyatt will be experiencing down the road. When you post your stories I know it will help me and Wyatt in the future when we are faced with the same situations.

I just ran into a situation today that really got me thinking. Wyatt is still very young (16 months) so I don't have any adults asking me questions about walking, running, etc But just today I was taking my 15 year old daughter to the DMV to get her learner's permit (now that's a story in itself, yikes, I think I scared the kid into never wanting to drive again). There was a young woman there (19 I think) with her 8 month old daughter. My daughter and I were admiring how cute this baby was. And I made the comment, "Oh she's about the size of Wyatt." This other mom immediately said, "How old is he? Was he a premie?" Wyatt was not with me at the time, but I get the premie question all the time. He's small only about 18 pounds (weighed 8.5 lbs at birth) but why do people, adults, always want to know "What's wrong!"

Then when we got home my 10 year old, Travis, says to me, "Mom the neighbor girl across the street wanted to know who Anthony is." (he's my 12 year old, he has asperger's syndrome - autism). Travis then says, "That's my brother Anthony!" She says, "Oh he's a nerd!" So then Travis walked away.

He then reminded me of just how hard it's going to be for Wyatt. He said, "Mom kids are always going to make fun of Anthony and Wyatt, huh? " He's 10, what in the world do I say to him? How do I help other children and adults for that matter who are going to meet Wyatt down the road see him for who is his, not what the DMD has done to him. He is so young now and I should enjoy him and worry about the DMD later, but that is so hard to do. He is growing everyday.

Thanks for listening to me vent. I really don't have anyone in my life except my husband who knows what I am going through. Take care everyone. Melissa
Since the children are related if they will be coming over often there is a childrens book about a boy with Duchenne's that tells all about it that you could get. I have this book for the kids at Christians school to read. I do not know the name of the book right now but If you want me to I can llok for it tom. and post the name then.
Danielle - I would love the name of the book. THANKS. cHAR

Danielle L Shoupe said:
Since the children are related if they will be coming over often there is a childrens book about a boy with Duchenne's that tells all about it that you could get. I have this book for the kids at Christians school to read. I do not know the name of the book right now but If you want me to I can llok for it tom. and post the name then.
Sorry it took me a little longer to find than I thought it would with work and school. The name of the book is Precious Time: Children Living With Muscular Dystrophy. It is by Thomas Bergman. I found it online and it has been very helpful explaining this to other kids as well as helping explain it in kids terms to my now 10 year old son


Char Burke said:
Danielle - I would love the name of the book. THANKS. cHAR

Danielle L Shoupe said:
Since the children are related if they will be coming over often there is a childrens book about a boy with Duchenne's that tells all about it that you could get. I have this book for the kids at Christians school to read. I do not know the name of the book right now but If you want me to I can llok for it tom. and post the name then.

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