Buna, Dawn, sunt tatal un doi copii cu DMD, din România, Europa, nu avem conditiile din SUA, sa continuam Dar mergem inainte, Speranta în viitor conteaza cel mai mult.continua sa traiesti cat mai multi Avand prieteni.I-ti doresc mult noroc si sanatate
Wow, that's a very difficult situation on your hands. If I lived nearby I'd be his friend, however I am unable to play video games because of DMD. As you know, someday he'll be unable to play as well. Is his father involved in his life? My suggestion is enroll him in other things you do, or try to get involved in what he enjoys doing. I started a support/social group in San Jose, Ca, it was a great way to make friends with similar interests and disabiities. I wish you luck.
Have you tried finding others with the same interests as your son? I understand finding friends is a difficult task, especially with having DMD. I would also try having your son take a course on video game design at your local community college. This way he can learn to make his own game. Let me know how things go.
Hi again Dawn,
I wouldn't give up on looking for someone to come in to play video games even during the winter...that shared interest could lead to doing other things together. It became a whole new connection for my son, and was also a lot of fun.
I hope it works,
I didn't want to be the only contact the guys had outside of school. As a teacher, I had some grading I had to do and when they went to bed, so did I. I never knew when I was going to have to get up with one of them; so, I found students looking for some part time hours. I found out what their interests were, and hired them to come an afternoon or early evening a week. I stayed home and did my work or read. They played video games together, worked on building models...whatever the common interest was. When I got to know them a little better, they went to an exhibit or Best Buy or the video store together. I stayed in the background; I used the "I have to get some work done" approach to start the socialization process away from me. Sometimes I'd find a neighbor kid, too.
I'd think about trying a college age kid...interested in same things and take your son on to the College Campus; have the student take him around, or go, too if Christopher wants you to the first time. Check out the book store, or cafeteria or Biology Dept. or Computer Dept.
In our local paper, I found a college student who was home for the summer, giving swimming lessons at home in his mother's pool. I stayed inside once I felt safe (my son had to feel safe, too) , where I could see, but let the two of them work together in the pool.
I had to be creative sometimes to get something going, but I was determined to had other people in their lives... Sometimes it was an education student or one of their cousins. Since we were together so much, and they didn't spend much time with their dad doing what THEY liked to so, I looked especially for guys who were patient and able to let my son take the lead.
It worked pretty well. The guys wanted a garden, so I found a student who worked in the yard and planted, weeded, watered following my son's directions. I think it worked well for all of us. There were some that didn't work out so well...didn't show up...
a pain, but they did some neat things. Some times scouts are looking for a project: making a garden...
Hmmm. Good question, Dawn. Answer may depend on who answers.
My cousin who had DMD lived to be 38.
I've always believed that prevention is an impt key. If they aren't feeling well, we catch it fast...
They had jobs to do at home; when they were older, they could go to summer school or volunteer one day a week (library, child
development center...) "Purpose" has been important, too. Older son completed his MA in Biology and taught part time for his
University until we moved to PA about 2 yrs. ago. Younger son has developed a website documenting the barn we've been
renovating...and making wheel chair accessible.
We always worked to make things they liked to do as accessible as we could.
We had regular adventures...driving 20 min to local mountains day after snow to play (We were all born in Los Angeles area.)
I wonder what they're answers would be.
I hope this answer isn't too long. You got me thinking about it. I've been a single parent for about 20 yrs and have been determined that we would do the kinds of things we all wanted to do. I especially like the "adventures" we've had. That's probably enough for now.
What does your son like to do? Great looking tux!!!