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Looking into the future

I would like to know what others do when their little boy speaks of his future. For example, my 5 year old grandson saw a shiny red sports car the other day, and stated that's what he wants to drive when he gets big. We didn't want to ignore his remark, and we certainly didn't want to say anything derogatory. We smiled and agreed with him that it was a really cool car, while cringing inside at the prospect that he may never drive a car. I can't imagine any other way of handling it at his young age. I'm sure my grandson is not the only child to speak about his future. I'm just curious as to how other parents/grandparents handle statements about their future.

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Permalink Reply by Ann Avery on April 9, 2010 at 7:54pm

Since each of our boys are different, us parents know them best and what they need to know about the future. My son is 29 and still has dreams of his future. I do not know your sons, but I will tell you about our experiences with ours. To me, the most important thing is they get to know and interact with others with dmd so they know they are not alone.. So, we found guys through MDA support groups and MDA camp. My son would never let us talk to him about dmd, but found it okay to talk about with his dmd friends. What a bond they have! Another important thing, as it also applies to any "normal" child, is to make sure he is a part of SOMETHING that involves groups. My son went from Tiger Cub to Eagle Scout. His fellow Boy Scouts pushed, pulled, and finangled the wheelchair through thick and thin. The fathers rigged a soap box racer for my son and almost lost him on a big hill. They had a long rope hanging out behind to grab to stop him--of course the car was faster than the dads. I had heart failure over that! His Eagle project was a ramp and that same load of cement also built the ramp the school board let him design for the high school. Church youth groups were also wonderful for him to be involved in. Knowing he wasn't going to be a great "jock", my son concentrated on his grades and became respected as a great scholar. I was able to go off to University with him and we were very busy with campus activities and groups. I bit my tongue and stayed in the background as best I could. (I know not every parent can take a 3 year vacation from their job or other children.) Now, I enable him to work full-time and this makes him so confident and proud. I take him to work and feed him a snack, then leave. An aide comes for 3 hours in the middle of the day to feed him lunch and do whatever is needed. I return about an hour before he is going to end his work-day. I guess I have gotten off the subject, but the point it let them dream as big as they can--they will alter these dreams themselves as time goes on.
But you can help them by keeping the focus on what they can do, and making sure they know they are not alone in having dmd. If they are upset and angry maybe you should seek counseling? I know each boy's parents will do what is right for their child as best they can. If your guy knows you love him unconditionally that will go a long way. I loved what Cosmin said above about parents getting to dream too. Our dreams may have to change over time, but our boys can have wonderful lives, and we can help.

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Permalink Reply by Terry Porcaro on April 12, 2010 at 9:46am

It was inspiring to see all the responses and to once again realize that we are not alone in this -- we are part of a Community. It seems we all have one similar response, and that is to allow the boys to dream. Thank you Ann for your input as the Mom of a grown son, and his experiences -- that is valuable information. I have a sign in my office that says "Believe". I think I'm going to buy another one that says "Dream" to remind myself that this is how we all flourish, through our hopes and dreams.