This 4th of July we were invited to relatives house.  It's a two story house which makes it tough on our son to begin with....Our son looks forward to being with his cousins.  Once we get there, all the kids runs around so quickly that our son can't keep up.  The kids make zero efforts to do anything with our son so he ends up playing with toys by himself.  Since they are my husbands relatives, he has spoken to the parents about this very situation before.  I guess it means maybe just finding other friends who's kids are willing to play with our son.  It was just the saddest thing to witness and I can't imagine how it must have made our son feel.  Even if he is a happy go lucky kid, he must have at some level felt left behind.  Many of the kids were using razor scooters and he tried but can't balance well enough on them.  I asked the 10 yr old cousin if he could use the three wheeler and he responded - yea, he can use the trike....Broke my heart to see the cousins not include him at all.  Wondering how other families have dealt with this.  Thanks Char Burke

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we had the same issue with our 11 yr old at a neighborhood bbq, sorry to say im in the same boat...we decided from now on we invite folks here and have only activities that our boys can do.
Jenn - Bummer - Maybe we can host a barbeque new year and invite you guys and some others....I would make sure ours boys would have the best time ever!! And, the girls - Baily of course!! See you at the Comedy event. Thanks for responding....Your friend, Char

jenn said:
we had the same issue with our 11 yr old at a neighborhood bbq, sorry to say im in the same boat...we decided from now on we invite folks here and have only activities that our boys can do.
I have responded by telling them that they all suck and have not attended any functions that dont include my son.

michelle
This won't work for everyone -- but I have observed my son with my grandson (DMD) (8) and here is what he does. He makes the event cool for my grandson. Some examples -- my grandson recently received a birthday invitation for a party at a water park for two very active twins. There was a note inside saying that they were unsure about my grandson's ability to participate but the twins wanted to invite him because he was a good friend. My son donned a swim suit and was my grandson's legs for the party. He carried him up the four flight of stairs to the top of the water slide countless times -- a good time was had by all. Second example, for the annual Department of Public Works (DPW) school field day at school, my son lifts my grandson into the seats of the equipment -- firetruck, rear end loader, etc. and another good time. Third example, my son is the den leader for the cub scouts, and designs activities that keep the active kids active and involved while making sure that my grandson is actively engaged. Fourth example, at their cousins house -- the one with the new trampoline --, my son is "jumping" my grandson to make sure he is safe. I could go on -- my son is trying to stay in the best shape possible to help my grandson not miss out on life. My son is missing some of the adult interaction of the events. The other kids accept him as my grandson's helper and not an adult who is there to "supervise."
Another observation, my grandson has lots of "girl" friends as well. They are not as active and play well with him. While going to the DPW field day, my son was pushing my grandson's wheelchair (he was invisible to the kids). He said that my grandson had a girl holding each hand. My son is telling my grandson that girls are not "icky" and that he would miss out on a lot if he didn't have friends with both boys and girls.
This works at this stage of the disease, but as it progresses, I am sure there will be times that my son cannot be his legs and times where my grandson may feel left out.
This is such a hard issue, both with family and at school... It just sucks altogether. The best thing I can say is to not stay away from family functions, but make your point clear that your son needs to have some sit down activities with his cousins and maybe play a board game, or nintendo, playstation, or soft swimming games (if there's a pool - sometimes kids get rough in the pool with marco polo stuff). Our family is large but not too many kids. My family's side is much more responsive to me and my siblings saying to their kids to play slower or sit down for a bit and include Nicolas. My husband's side - not so much. They play baseball and run around and play it while running through the houses, etc. I just make (literally make) Nicolas' sister or one of his cousins play with him for a bit. After that - if they want to join in the fun with the other cousins, I'll sit and play with Nicolas or have an older cousin or aunt play with him (cuz i'm just mom and do it everyday). when the other cousins see that he's having fun doing something that doesn't include extreme physical exercise, sometimes they'll sit and play for a bit.

I know that Nicolas hates that he can't keep up and feels out of place, but for the most part, we don't have a ton of family gatherings so it's only on certain occassions. What I am worried about, is the future when he is non-ambulatory. I think I'll just pimp out his ride (when we have to get a power chair), and have him chase his cousins - maybe run over their toes to get them back!! It sucks but a lot of times, family is worse than kids at school. I don't know if it's because family just doesn't want to deal with it and explain because it's hard on them too... but at school, I always have MDA come in and speak to the classroom and they're more accommodating.

I find Nicolas getting tired by trying to keep up with relatives, and that's when I scold the cousins (our family believes in "it takes a village" and we allow aunts, uncles, etc. to reprimand or praise). My thought is if you don't deal with the family much, just to explain to your relatives that this is a problem that needs to be addressed. And stick to the kids in the neighborhood, or family members that actually play with and don't have a problem playing sit down games with our son. He knows and understands who his true friends and family are.

I also agree with Rosalene - girls seem to be much more caring and attentive than the boys in the family.
Wow, you have one terrific son there! God bless him for being such a caring and thoughtful Dad.

Rosalene Graham said:
This won't work for everyone -- but I have observed my son with my grandson (DMD) (8) and here is what he does. He makes the event cool for my grandson. Some examples -- my grandson recently received a birthday invitation for a party at a water park for two very active twins. There was a note inside saying that they were unsure about my grandson's ability to participate but the twins wanted to invite him because he was a good friend. My son donned a swim suit and was my grandson's legs for the party. He carried him up the four flight of stairs to the top of the water slide countless times -- a good time was had by all. Second example, for the annual Department of Public Works (DPW) school field day at school, my son lifts my grandson into the seats of the equipment -- firetruck, rear end loader, etc. and another good time. Third example, my son is the den leader for the cub scouts, and designs activities that keep the active kids active and involved while making sure that my grandson is actively engaged. Fourth example, at their cousins house -- the one with the new trampoline --, my son is "jumping" my grandson to make sure he is safe. I could go on -- my son is trying to stay in the best shape possible to help my grandson not miss out on life. My son is missing some of the adult interaction of the events. The other kids accept him as my grandson's helper and not an adult who is there to "supervise."
Another observation, my grandson has lots of "girl" friends as well. They are not as active and play well with him. While going to the DPW field day, my son was pushing my grandson's wheelchair (he was invisible to the kids). He said that my grandson had a girl holding each hand. My son is telling my grandson that girls are not "icky" and that he would miss out on a lot if he didn't have friends with both boys and girls.
This works at this stage of the disease, but as it progresses, I am sure there will be times that my son cannot be his legs and times where my grandson may feel left out.
Terry -- I am so proud of my son and his wife. This disease is so horrible and takes such a toll on a family.

What they do is PLAN or "strategize" (as they say). When an event comes up, they will talk through what they can do to make it easier for my Grandson and even call the event holder to discuss strategy so our grandson can participate. This has translated to school and my grandson's closest friend's parents for play dates. It takes a toll on them having to anticipate so much and sometimes they get it wrong.
Hi Rosalene: I'm guessing every parent here has to plan for their "outings." It's never just a walk in the park. I know my daughter always scouts things out before any event. Even my grandson's Kindergarten Carnival had to be reviewed with his teachers so that my daughter could choose what events he would be able to participate in. My daughter and son-in-law have two sons with DMD so sometimes it does get overwhelming, and yes, I guess sometimes things will go wrong, or not exactly as planned. Your son's extraordinary participation in his son's events is to be commended. He seems like he is the wind beneath his wings.

Rosalene Graham said:
Terry -- I am so proud of my son and his wife. This disease is so horrible and takes such a toll on a family.

What they do is PLAN or "strategize" (as they say). When an event comes up, they will talk through what they can do to make it easier for my Grandson and even call the event holder to discuss strategy so our grandson can participate. This has translated to school and my grandson's closest friend's parents for play dates. It takes a toll on them having to anticipate so much and sometimes they get it wrong.
Unfortunately you are going to encounter this situations with family,friends,in school etc. The most important thing that you can do is start building up your son's self esteem and spiritual relationship with God. Teach him that he has a condition that many other boys have and that he can be the best of friends and those who do not appreciate him it's their lost. I know how much this hurts and most people do not understand our situation and also do not teach their kids consideration and love for the physically challenge. Also try to find out if there's another family in the same situation close by and make friends. My son played Power Soccer for kids in Power Wheelchairs for many years and made tons of friends. Take time to play with him and take him places, I did it with mine and we had a lot of fun, we also shoot rockets when he was able to walk and he had a blast. Talk to your relatives and made understand that he is part of the family and to include him in some of the activities. But the way that he handle adversity will depend on the values that you teach him, this kids have a way to bless our lives in so many ways. I know as a parent we want to protect them but trust in God and keep caring so much about your boy, that will always be a satisfaction

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