Having friends is becoming an issue
My son started Middle School this year and was pretty popular in the elementary setting. He had plenty of friends to invite to his 11th birthday party. This year things are different; although still known by everyone, he really doesn't have anyone to call his real friend, by this I mean noone he would call to come over outside of school. Kids seem to be creating their own groups @ this age and he's not really included in any of these. On top of all this, the boy who he has considered his best friend for about 5 yrs. seems to be busy or doesn't return his phone calls. I know kids at this age are not trying to hurtful they just want to have a good time but my son is starting to notice noone wants to hang out with him. It is so hard on him and he is such a kind person. I have told him that sometimes you have to put yourself out there and jump in a join a group and he tries. I think even though these kids have known each other since Kindergarten they see the wheelchair and that's it. It's getting harder each day to put him on that bus knowing what he is up against; life is hard enough at 12 but then throw a obvious disability out there and look out. I just had a tough morning and was looking for somewhere to vent I guess. There is a program called"rap" in our area for disabled children to get out & socialize w/out their families but in the past a lot of these programs have kids with mental disabilities which is great but my son is intimidated with that and I've yet find a group with kids on his level. I hope this is just a phase and things will improve for him. This is a difficult time.
Any advice would be appreciated.
Colleen
Any advice would be appreciated.
Colleen
Replies to This Discussion
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Permalink Reply by Ian Anthony Griffiths on
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I'm 24, with DMD, I have friends but mostly online, no-one evers asks to come over, its been like that from secondary school. I made friends, but more like aquaintances, I felt perceptively "outside" the group. I recently contact two school friends, we made plans to meet and chat but they always couldnt make it, and now they dont call/text me. I worked so hard to find them ringing around, and now they've gone. Why should i have to keep phoning them, when they dont ring me. I've made great friends from actionduchenne. Also on deviantart. Visitors for me are very rare. Isolation is a tough cookie, no girlfriends is hardest when all the school friends I have on facebook are married or have kids. I feel left behind. I'm a positive guy and enjoy my art and helping actionduchenne. Going out is extremely difficult for me, and I have trouble just wanting to go. Then people say go out and seize things, it doesn't help me, when all i want is friends to come here, just chat etc... Its great seeing people when they come.
Then I see other DMD men going out, getting degrees, I feel my mind saying, "what the hells wrong with you", I dont want to go out, i feel happy at home, and then i feel i'm the most anti-social, lazy dmd man there is.
my art keeps me going
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Permalink Reply by Michelle Scaglione on
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Hi Ian
My son is 16. If it wasnt for his brothers, cousin, grandma and grandpa (and ofcourse me and my husband) my son would have noone. I too feel he has been left behind. He watches his brothers and cousin go to college, work and have girlfriends. It is heartbreaking. You are not lazy. My sons health upkeep is exhausting to him and myself. It takes more energy and time to do a simple task. My son too feels happy at home. What I do is have him go to sporting events, movies and out to dinner. I try to make sure his brothers and grandparents come so it is more fun. Do you have any siblings?
Michelle
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Permalink Reply by Susan Rathfelder on
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My son is 18 and has isolated himself. He is finishing HS in an independent study program through the school district. Even when he was going to school every day kept to himself, he created this little island to himself even though there were about 4,500 other students on campus. He just seems happier that way. I wish he had friends because he does have so much to offer, he is funny, bright and a really good friend. The two of us are in this house all day pretty much by ourselves, we are starting to get on each other's nerves. After all it isn't good for an 18 year old to be home with his mom all the time. I don't have any suggestions, as you can see I haven't figured it all out either.
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Permalink Reply by Dee on
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I could remember when that happend to Tim at that age and eventually he withdrew ...but I too noticed that when he was with a group of kids, it was like he was a different guy! I think alot of the parents here gave you some really good suggerstions and perhaps being creative in other things too.
I know its hard as a parent to see your son go through this...it unfortunately happens...and the good thing about it is that we have more control (Tim reminds me of this alot! lol) to get them out to do things. usually it works ...but at school there is peer pressure. and they do overcome that eventually.
Tim gave me the impression that he had no friends in HS but on his graduation day, when they called out his name for his diploma, the whole graduating class stood and applauded. So he had more friends then he thought. And many are adding him to their friends list on Facebook.
Dee
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Michelle Scaglione said:Hi Ian
My son is 16. If it wasnt for his brothers, cousin, grandma and grandpa (and ofcourse me and my husband) my son would have noone. I too feel he has been left behind. He watches his brothers and cousin go to college, work and have girlfriends. It is heartbreaking. You are not lazy. My sons health upkeep is exhausting to him and myself. It takes more energy and time to do a simple task. My son too feels happy at home. What I do is have him go to sporting events, movies and out to dinner. I try to make sure his brothers and grandparents come so it is more fun. Do you have any siblings?
Michelle
I have two sisters, my eldest sister moved and has kids, they visit often. My middle sister is moving out soon, so it will be just me, mam and dad.
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Ian
My son who has DMD is my youngest. I know he worries about his 2 older brothers moving out. He says it often. Most of the time its just him and me and I know it gets depressing. I try to do alot of things with him( hockey games, baseball games, movies, dinner out) and I have spoiled him( I have the credit cards to prove it) but you know what I dont care. I want his time him to be his best I can give him. I hope your sisters stay apart of your life. I tell my other sons to be apart of their brothers life and enjoy him as much as they can.
Michelle
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Permalink Reply by Danielle on
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Hi, my brother Frankie went to a special needs school. And even when he got to the later stages of his condition (he was confined to a bed, which I've been told doesn't happen in many cases) but he found it hard to even sit up, so can you imagine how we were worried about socialising. But because he was in a special needs school, they wheeled his bed into the classroom! Which was great! We asked them to widen his door and wheel his bed down to class.
In his special needs school, it was good for him, because some of his friends could do more, and some of his friends could do less, so he wasn't constantly at the bottom of the pile (as far as physical ability). It was physical disabilities (not learning difficulties) school so that also helped, as frankie found it hard to relate to people who were severely mentally disabled. I'll always remember how one of his friends with a different condition had arm strength, where as frankie didn't. But Frankie knew the answers to the questions. So they worked as a team, frankie would say the answer and Jamie with arm strength would write it in the correct box! That was only for one task, but it did show a nice way of working together with mixed abilities. Also, a group of pupils would sometimes come into Frankie's room at school (because he stayed there Monday-Friday, he had a bedroom there). I wish we'd made that into a regular arrangement actually, where they'd come down once a week or something, but he seemed to be happy with it being as and when. It probably worked out at about once a week (and he would socialise in the evenings about twice a week, with the other resident pupils).
As well as special needs schools, the hospice was a great place to meet other DMD boys (Frankie went to Hope House) see picture of his friends there. So Hospice and special needs school were great as far as socialising. But he did loose contact with his mainstream school friends, and I think that's inevitable as they move on, get interested in new things etc.
He did spend more time doing his own thing, inevitably, but we would make sure we always tried to schedule things in like games nights etc. We had a poker night in the house, murder mystery night, board games nights (see pics). We even hired his school hall and booked a metal/rock band (see pic). But some of the best times we had together were just watching films as a family. It was hard to persuade him to come off his computer, but we would come to a deal at the start of the day (off at 5pm or something like that) and then we got so spend some time with him.
So I would say the things that worked for us were: Hope house hospice, Special Needs School and enthusiastic parenting involving organising fun things to do. But it does depend on the situation and each person is different, I know some boys would hate to do some of the things we organised and it was only because Frankie was up for it that it worked.
I'm going to try and add some pics below...hope it works....
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Permalink Reply by Karen on
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Hi
I think middle school stinks. It is awful for everyone. Erik (16) was pretty unhappy (peers were rude and friends had moved on). Thank goodness for high school. He was scheduled for more advanced classes so he had sophmores and juniors in most of his classes. They were nice to him. I required that he get involved in one extra curricular activity. He chose medical club. There were 15 students in the club and he felt included and comfortable. He was a math tutor his sophmore year which set him up to know more of his classmates. His junior year he was recruited to join the debate team and became an officer in medical club. Debate was another small group of bright, misfits. Erik fit right in. I traveled with the group to tournaments and brought treats. Erik's debate partner is a boy with dyslexia. Two boys on IEPs competing in policy debate. What a hoot. Debate runs between Oct-Feb so we are gone everyother weekend. Erik doesn't feel as isolated this year.
We don't have a lot of friends over on weekends, but he needs the down time to recouperate from the week and just chill. We all have our own balance between work and play. I think it is important to try to find balance. I found HS to be better than middle school because there are more extracurricular activities offered and students are more mature. Erik did the stats thing in middle school too. He thought it was OK. Best wishes for the next few years, hopefully they will pass quickly.
College will be another hurdle I think. I have mixed feelings about HS graduation next year.
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Permalink Reply by steve catalli on
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This hits home with me, when i was 11-12 the whole social collapse. They were indeed very hard times, i was very depressed. The Jr High phase was the hardest, kids in general at that age are finding who they are. I resented people after that phase. my best friend was rock music and i took a pen and put the pain on a paper.
i came out of that void around 10th grade, i had just moved and was going to start school for physicly disabled, but i went to the public school for 2 days. i remember 2 girls saying i was cute, i had never heard such words before. then i went to the disabled school, which in ways I regret.
even at 24 my social life basicly sucks to be honest. though im allright with it. my main thing is trying to find a significant other. i rarely go to a bar and chill. my brother who has duchenne as well, has a serious relationship.
what advice i could give to the young guys and you all? i'd say be yourself, be ready for the ups and downs, don't be afraid to be turned down, and never give up. life is never easy, if it were we would never reach for the stars.
-steve
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Permalink Reply by irishgirl on
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Hey Colleen:
I just came across this post and I know it's old, but how is your son doing now? Have things improved with the other kids at school? I certainly hope they have. You see, my son is just now 10 and completely mobile. I do not know what life will be like when he starts middle school in a year and a half. But I live in a small town where no one really sees wheelchairs except for the elderly. Certainly, it's not the norm for a kid to be seen in one. In my opinion, people around here would either just stare or stay away. Since they do not see this everyday. I live about 40 minutes West of Washington DC and it's a different world out here. I grew up in Alexandria (10 mins from DC) and I would like to move back that way because a kid in a wheel chair is not a big deal in the city. They have seen it all before.
But, I was just wondering if your son, by now, has made a good adjustment. Please let me know. Thanks, Noreen
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Permalink Reply by Colleen on
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Hi Noreen,
Well, my son is 13 now and he is in 7th grade and I wish I could say things have gotten better socially, but unfortunately they haven't. Last winter I did host a boys nite, as one parent had suggested here on this site, and we had 5 boys over and they all had a great time. My son was thrilled and I was even happier than him, I think. Then just recently for his birthday he called a few friends to go out that wknd to an arcade and to eat to celebrate, either noone answered or the kids were busy(some couldn't even call to let him know after he had left a message, now that's frustrating)! He did find one friend to come, thank goodness. I see him becoming isolated and it really bothers me. His brother is 16 and is driving now and I have asked him to include his brother when he goes out w/friends once in awhile. He has done this and it is great even thought they are not in his grade at school, at least he gets out without Mom or Dad around. I hope things change in high school. It doesn't help that he's shy and is very conscious of himself, his self esteem is very low and we are constantly trying to improve this. He hates to even look at himself, it's just terrible some days. We go shopping and to the movies and out to eat. Those are some things he really enjoys. I just take it one day at a time, I think that is all that we can do.
I hope things are going well for you and your family during this holiday season.
Colleen
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I should probably mention that my social life is not very exciting, other than my sisters- none of my friends call me. I have tried to reach out more than once and never seem to get a call. It is very strange and I really don't think about it anymore, I guess because you get so caught up in taking care of your family that you forget that you haven't had a girl talk in a long time. I always think that if I had a friend with a child who had a disability as ours do, that the least I could do was call just to say hi and how are you. I just don't get it. I'm encouraging my son to get out there and socialize and I've given up myself. I'm lucky to have my sisters, they are great to talk to and my husband. I'm grateful for them! I do miss having girlfriends still. Wish I was more upbeat. Sorry.
Colleen said:Hi Noreen,
Well, my son is 13 now and he is in 7th grade and I wish I could say things have gotten better socially, but unfortunately they haven't. Last winter I did host a boys nite, as one parent had suggested here on this site, and we had 5 boys over and they all had a great time. My son was thrilled and I was even happier than him, I think. Then just recently for his birthday he called a few friends to go out that wknd to an arcade and to eat to celebrate, either noone answered or the kids were busy(some couldn't even call to let him know after he had left a message, now that's frustrating)! He did find one friend to come, thank goodness. I see him becoming isolated and it really bothers me. His brother is 16 and is driving now and I have asked him to include his brother when he goes out w/friends once in awhile. He has done this and it is great even thought they are not in his grade at school, at least he gets out without Mom or Dad around. I hope things change in high school. It doesn't help that he's shy and is very conscious of himself, his self esteem is very low and we are constantly trying to improve this. He hates to even look at himself, it's just terrible some days. We go shopping and to the movies and out to eat. Those are some things he really enjoys. I just take it one day at a time, I think that is all that we can do.
I hope things are going well for you and your family during this holiday season.
Colleen
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