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.
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!
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.