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

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My son is also 12, but has a late birthday so he won't be starting middle school until the year after next (our middle school is just 7th and 8th grade). I am very worried about this in the future as well. He is very popular in elementary school and has many friends, but I feel this may not be the case as he gets older. I have noticed the same issue with groups in our area for kids with disabilities. For every one kid with a physical disability, there seem to be many with mental disabilities. I struggled with this last year with one summer camp that Jason attended. One thought that I have discussed with Jason, even though it is a year or so away yet, is that I want to try to get him involved in something in middle school right away. He loves sports and I told him that I am willing talk to the coaches with him and see if he can be a statistician or some kind of support person for one of the sports teams. I think this is something that would really help if he can get involved. I know it is easier for me to talk about it than it will be for Jason to do it. He isn't all that enthusiastic about jumping into new situations. I'm sorry that I don't have any advice for you I am just letting you know that there are definitely other people out there that feel the same way and empathize with you.

Holly
I remember reading about a mother who would throw movie & pizza parties, be the driver/chaperone for concerts, etc. on a regular basis to make her kid the fun kid and her house the fun house. I used her advice a couple years ago for my typical son who was just socially delayed and it worked. Maybe you could try stepping up and creating the social events at your house or around your son. We have already made our house the "fun house" for Jack and his friends at 8 years old, so hopefully we will be able to keep that through highschool. Just an idea!! I remember how hard middle school was for my athlete son, I can't imagine how it is for our disabled boys!

Ang :)
I too was the mom, ( a single mom at that working 60 hrs. a week ) that had all of my son's buddies over during the teen yrs.. I took them everywhere we went this did give my son his social time with boys his own age.....then the downfall....once the boys became older and interested in girls, they are started dated and there sat my Adam without any girls interested in him. Then the isolation sat in, as his buddies all got jobs, busy with their girlfriends, some ended up doing the party and drinking and some the drug scene ( which none of this Adam does ), some going away to college, some going in the military and moving away....so, yes do the gatherings at your house, but don't over do it and burn yourself out.....as you are the mom with the boy that is living with Duchenne MD, such gatherings can also be arranged at the other boys homes and give you a break.

Cheryl
My son is 10 and will be eleven this year and I worry about the same thing. My friend Tanya (I"m sure you all know her..she's quite active in this group) has a 14 year old that is being bullied by some kids at school and I'm really afraid of that. Josh, her 14 year old, only has strength left in his fingers and I worry that someone might hurt him and he wouldn't be able to do anything about it. It's make me think about home schooling my son right before he starts high school. I'd lose my mind if someone were to pick on him.
Hi, thanks for the replies, these are real concerns and you all have some great ideas. Love the stats. one, I will talk to the coaches @ school about that. When I picked Westin up from school, he was so happy and had a great day! I was so worried about him all day; that's kids for you. Anyway, I mentioned to him the idea of having a few boys over on the wknd to hang out and he was all smiles. That made my day. Thanks.
Colleen
My son is 19 and I remember the social difficulties also. Christopher was always a bit of a loner and a lot of times seemed to prefer it that way. However, I noticed that when he was in an organized group activity..he just came alive. In high school, he joined the marching band and it was the best thing he could have ever done. They got to travel to Dallas from Clearwater, FL , by bus to be in the Cotton Bowl Parade and half time. My husband chaperoned (earning major points!). Christopher still proudly tells people about being in the marching band. He still was never one to have people over and socialize that way...but when he was part of a group...he loved it. Now, he plays power chair soccer and that has been a great thing for him too. I stongly recommend some sort of organized activity! Good luck to you.
Just read your post, It is great that we can vent here. I am afraid that this will happen to my son. He does have a lot of friends in school but does not get many phone calls out of school. It looks like we are all going to go through this. We just have to be positive and there are many parents out there with great ideas. Hope you feel better and have a great day!
I am thinking that with Aidan, we'll start scouts pretty soon, hoping that maybe it will give me a group of friends who do things outside of school. Also, they have lego-building clubs around here that build some pretty amazing structures, and I thought that also might be something he would be interested in. My other idea is that the last time I was at the science center in seattle, they had a kid that looked like he had duchenne working at the center. Maybe, once they're around 16 or something, there would be a place that he could work like the science center (I think the kid was giving tours or answering visitor questions) that would get him out interacting with people, and make him feel like he was doing something productive? AIdan's only 5, so what do I know, but I think about these things already.
Mindy, I had to go back and re-read where the science center was that you visited, because Christopher volunteered at the hands-on science center/museum last year here, in Florida. At first I thought you might have seen him...but definitely not in Seattle! Christopher helped the kids with the exhibits and answered questions. They offered him a paying job recently, but he really doesn't enjoy working with kids. He's taking classes in Computer Assisted Drafting at the local college now, and we hope that he's found something he can really enjoy and become employed in. I think that the lego-building clubs are a great idea! We looked into Robot clubs when Christopher was in high school..but he found his way to marching band instead. He even worked at Target, part-time, in the electronics department during one holiday season and just loved it. Unfortunately, the economy problems hit and the store didn't retain any seasonal employees. Keeping them productive and not isolated is so important!
We had this same issue, and I just had a quiet word with Mitchells aid at school to see what was going on. She assured me that these "falling out" episodes were going on with all the kids, and it had nothing to do with the wheelchair, and everything to do with the fact that the kids were growing up and learning to spread their wings - it was perfectly "normal" 11 year old behaviour.

It stinks that our kids have to deal with the regular issues of becoming men, along with coping with DMD, but at the end of the day, while we can fight discrimination, you can't change human nature. One of my other friends also reminded me that this situation should make me happy..... at first I couldn't believe my ears, but then she explained that if my son was facing the same challenges as the other kids in his year, it showed he was being treated like everyone else, and not being treated as the "kid in a wheelchair". She was absolutely right.

We now have Mitchell doing drama after school. Not only does he love it, but it gives him something to talk about with the other kids when they say they won their football game on the weekend, or got another swimming award....The boost to his self confidence is fantastic and the fact that he is learning to project his voice and make himself heard is a great asset.

He has also done choir and music. The choir was especially beneficial as the breathing techniques are fantastic physio for our boys.

So the long and the short of it, if you are concerned about whats happening to your son, have a quiet word to the school to see if this is all part of the normal 12 y.o. psyche or if it is an issue specific to your son that needs to be addressed. That way you will know which approach you have to take to guide your son through this hard time, and help him reconnect with his peers.
Hi Everyone,
My son Wyatt is 11 1/2 yrs and I see most of you have sons in the same range... It is always a pressure when I think about friendships fading out. He is still ambulatory but getting heavier and having more trouble getting around. I don't know what the summer brings. I have managed thus far to get him into friends houses (we are in CT and it has been a cold and snowy winter and playdates are inside) but getting him up stairs in friends houses is becoming very hard for me. I have hurt myself lifting him in the last few months and I am very nervous about the spring/summer.
We went to his school (he is in the 5th grade and middle school is coming on)- we had a meeting about his needs and they felt that he has been less of his happy self and is isolating himself from others. This was never, ever a problem. I asked him about this and he told me that friends have been pulling away a little and in response he does the same. His
feelings haven't changed- he feels them pulling away a bit. They also mentioned that his grades are slipping when I see his homework workload increasing! I was annoyed with the school because I had warned them about both issues, but I think that what would be more helpful would be to speak with his class regarding his physical changes. He is still the same person although he seems weaker. His teacher also needs to be reminded of the fatigue factor. It was said that he does the homework "he feels like doing". Actually, he stops when he can no longer go on! I spoke with his physical therapist and the social worker and they both agreed that "the talk" should be at the beginning of middle school and all of the issues should be discussed at our year-end meeting and beginning of the year meet.
This summer will be challenging but I will be at home (I work in the school system) and I have to keep him out there and active. He needs to get over his fear of sometimes using the scooter- last summer we didn't use "wheels" at all.
Don't know if I've helped anyone, mostly rambled!
Well, we all need to think back to when we were venturing into our teenage yrs., this peroid is hard for any boy or girl.
If your son isn't shy then he will do better than a DMD boy who is shy, just like if a healthy boy is shy or not, if effects how we interact with our peers and others. And yes sometimes some of our sons peers do shy away when they can no longer walk.....( because it is just like our friends who don't know what to say to us ).....their peers sometimes don't know what to say, because they don't fully understand what is taking place with their friends. God gives and he takes away, old friends will be replaced with new friends, new friends that will understand and get the picture better. And also don't forget how it felt to be different when you were a teenager growing up.....and I am sure alot of us made infront of someone that was different than us and we wouldn't go speak to them, or select to be on our team when picking teams...remember how some of us treated these peers of ours.....imagine how we made them feel, our sons will have some uncaring and unkind peers do the same to them, because these same peers will do it not only to our sons, but to other kids that don't dress like them, etc..

It also depends if your circle of friends- that you are the one going to visit at their homes all the times and they hardly come to visit at yours - we all have these type off friends and family members - it's the same distance between your homes but, you can travel that distance to see them, but they can't travel that same distance to come see you....this is where the isolation comes into play.....you can no longer get your son into their home, and these type of freinds and family members don't quite get the picture when they keep inviting you over instead of going to visit you at their house to make it easier for you.
So, sign your sons up for anything you can....boy scouts, swimming lessons, t-ball, arts and crafts ( did you know that alot of DMD boys are very artistic ), and there were some good activities listed here in the other replies. This not only helps them socially, but it helps the disabled that rely on wheelchairs and the non-disabled blend their 2 worlds together, you wll be teaching the other world of ways that need to be adapted to enable the wheelchair users the same chance at doing what the non-wheelchair users do.....wheelchair users can do alot, we just have to use our imaginations and find the way to make it happen, and once we show that world of what wheelchair users can do then we all become comfortable around each other and they will start finding and figuring out ways also to help you do things that many take for granted.
My son was able to work at the School Farm our school district has thru the High School, it is a agriculture farm where the students plant, grow, pick, produce and sell their products in the school store.....I even got a job there one summer.
He even worked at a Bag Company when he was 16, they had him placing the bar scan code stickers of potato bags.
Keep out in the public, if we hide inside like the disabled did many yrs. ago, then how can the non-disabled understand our world and businesses won't need to change things like accessbility issues, but, when we are out in the in sight, things will have to change to accomodate all the wheelchair users in the world, not only do us DMD families face these challenges everyday.....there are many young men and women coming back from the war disabled.....we all can change the world to except the disabled.


Cheryl

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