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Siblings of boys with DMD

My son, Joseph is the middle child in our family and is 12. Our youngest, Ashley, is 6 and doesn't seem to be too affected by her brothers disease (which has truly been a blessing in our family). Our oldest, Samantha, is 14 and has watched the progression of her little brother. It has been the hardest on her, I feel because she knows what it used to be like for him and also understands what the future looks like for her brother and really can't talk about it without falling apart. I didn't realize just how affected she is by her brother until last week. Her counselor pushed the topic of her brother and when she came home she couldn't stop crying and seemed to become quite depressed (even more than usual). In fact, she cut school because she was so upset. We've seen a lot of anger, problems in school and troubles with friendships. None of her friends understand her life at home and her relationship with her brother. My question is this - how do all of you help the older (and perhaps, younger) brothers & sisters of our boys? I've checked for sibling support groups in my area and haven't found one, yet (I'm still looking). I wonder if Samantha could connect with kids who have some of the same feelings, she can feel like she's not alone. Do any of your kids attend any sibling support groups? Any ideas are greatly appreciated.

On a side note, my husband also doesn't like to talk about any of it. I know that doesn't help my daughter, but my job is to worry about her. I don't like to talk about it, but don't avoid it.

Thanks in advance for all your help!!
Christina

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Permalink Reply by vilma rodriguez on January 27, 2010 at 9:45am

This situation it's very scary and overwhelming to think ahead I remember when our youngest son Ismael 22, was diagnosed I was so scared that I did not wanted to talk about it or even research the details of his prognosis and for a long time I tried to avoid meeting parents with older kids with DMD because I was afraid to see the progression. I was on denial until my son started playing Power Soccer and I met a wonderful group of parents that made me feel I was not alone and I learned to accept the facts with professional help. His siblings were teens at the time and took it very hard specially my daughter Jenny because her best friend in high school had DMD and passed away.My only advice is to get informed, be proactive and aggressive on his care but take it one day at a time don't get stress thinking what's the future will hold enjoy the moment,deal with the situations as they come.Seek professional help and spiritual couseling for your family, remember this can be very painful to deal with and sometimes we need to accept the facts first in order to be ready to join a support group. You need to be strong to help your family, you can do it! Duchennes is a condition we unfortunately have to deal with is not your whole life. You're in my prayers

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Permalink Reply by Kim King on January 27, 2010 at 6:05pm

Christina
I noticed you have a daughter the same age as my daughter. My daughter, Sidney, has asked me a couple times if i knew anyone that had a sibling with DMD that was her age that she could connect with. please send me a private email if this is something your daughter would be interested in. We can exchange their email or facebook addresses.
Thanks
kingme4@prodigy.net
Kim King

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Permalink Reply by Lori Ware on January 27, 2010 at 11:26pm

There is a FB DMD siblings group....

Kim King said:

Christina
I noticed you have a daughter the same age as my daughter. My daughter, Sidney, has asked me a couple times if i knew anyone that had a sibling with DMD that was her age that she could connect with. please send me a private email if this is something your daughter would be interested in. We can exchange their email or facebook addresses.
Thanks
kingme4@prodigy.net
Kim King

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Permalink Reply by Kim Simpson on February 19, 2010 at 10:08pm

Do you think that treating him badly is the way he is coping with his brother's illness?. Instead of crying he is coping in anger? The reason I am asking is I have 3 boys and my middle boy treats his older brother (DMD) the same way you are describing. I have often wondered if anyone else's children had the same behavior that he does.

Jerry Dallapè said:

I have the opposite problem. My oldest son is 12, Ewan is 8. The older brother doesn't seem to care about his brother and continues to treat him badly despite knowing what is in his future. It is very frustrating and a continuing source of conflict between us. I'm hoping he will begin to show some empathy once Ewan loses ambulation, though I have my doubts.

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Permalink Reply by Leila on May 4, 2010 at 9:11pm

I am 23 years old and my brother Steven is 24 and has DMD. The biggest thing I did for myself was to find a therapist I felt comfortable with and trusted. When I was younger I didn't think it affected me, but looking back on it I internalized a lot of it and really struggled emotionally when I got to college. I would absolutely be willing to chat with her if you'd like. I know there's an age gap but if she wants to ask questions or anything it might be a nice outlet.

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Permalink Reply by Lisa Malka on December 30, 2010 at 2:48am

I have 3 girls 16, 14and 10. My son is 12. The biggest problem we have is with the youngest. She is very jelous of the attention her brother gets, and even though we've explained so many times that ther's alot that he can't do on his own, she doesn't seem to get it. We live in Israel, and sem to be very much alone.

I will definately sujjest the DMD siblings to my older girls, but the youngest isn't very strong in english.

I think there must be help for these kids somewhere.

A hopefull and happy NEW YEAR to all the DMD sufferers around the world.

Lisa, Omri's mum

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Permalink Reply by Rhiannon Traigle on January 20, 2011 at 1:51am

My daughter Reagan is turning 12 next week and she and I just had a long conversation about her wanting to talk to the counselor at school. I'm a therapist, but I know it's easier for her to be able to talk to someone that is not emotionally 'tied' to what she is feeling. I talked to her about connecting with other siblings and she is open to the idea. Anyone with a son/daughter around this age (Reagan is very mature and could probably benefit from talking to a sibling that is a little older) please let me know if they want to connect to her. My email is rhinsu@hotmail.com and my cell is 985-713-1634.

Lori, she does not have a fb but I was gonna let her get on for the sibling group....I couldn't find it? I know your girls are a little older, but Riley and Seph are the same age and I think Reagan would 'appreciate' that they are from Louisiana, if either of them want to connect with her, I would appreciate it!!

Rhi

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Permalink Reply by Jennifer Bauer on June 2, 2011 at 11:53pm

I have a 30 year old brother with DMD. I can remember having a real hard time dealing with having a sibling that was disabled. Now, my bro and I are so close. I have never been able to leave him even to go to college. I also live 5 mins from him so I see him all the time. It's so hard on everyone! Hoping I can help someone with my experiences.

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Permalink Reply by Donna on June 3, 2011 at 2:23pm

I'm glad I found this discussion. I also have a 14 year old daughter (will be a sophomore in the fall). Tough enough being a teenager girl, but add this on to the mix and we're in for more head spinning and emotional roller coaster then I ever thought possible. Her downs are down, really down, hating her life, etc etc etc. She too is very angry and quite honestly this last 6 months or so have just been a bummer. I really try to talk to her and be supportive and sometimes I honestly just want to shake her and yell at her and tell her to look in the mirror and look at what she is doing to herself. I have not hit the "angry" stage at all - perhaps that's not good and perhaps I just won't, but I get SO FRUSTRATED with her wanting to just be miserable when Kyle is just a bundle of joy and lives life to the fullest. I keep telling her she is going to miss out on SO MUCH because she will not accept his condition. I've suggested counseling and she says no. That's such a hard situation too, because if you don't get the "right" person, you just feel more helpless and hopeless. She really has a heart of gold and loves her little brother tremendously, but I'm about at my wits end with her - I sure hope the summer goes well....

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Permalink Reply by Sheila Moeschen on June 3, 2011 at 6:55pm

Hi All,

I'm the sibling of a 38-yr-old man with Becker MD. There are so many complicated issues for siblings, many of which might not be tied to the disease, but just a part of figuring out how to navigate so much big terrain in such a small, rapidly morphing body. My brother and I grew up in a time without the Internet, without the resources and outreach available for so many DMD families today. We had each other, our friends, and our family. I can say that forging a network for siblings is an awesome idea, one where they don't necessarily even have to talk about MD, but where others simple "get it." Isn't that what is so valuable to families?

I will also say that each sibling is unique and they simply want that to go noted and recognized. Oprah did say it best when she spoke about every person wanting simple validation: "Do you hear me? Do you see me? Do I matter?" Siblings of individuals with health or medical challenges want that too, and they want it about them, uniquely, which means apart from the ever-present health specter. They want to be able to express how they are doing, not just "how are you doing with this?"

I really think that identifying, nurturing, and celebrating each siblings unique gifts, contributions, achievements, dreams, and desires is key to helping them forge their own lives, to teaching about how to be a whole person first before you help others, and building the strength and resilience needed for when the going does get tough for both them and the people they love.

I am happy to chat more with anyone here; I'm also heading up PPMD's women's wellness initiative called HerSelf First. We're on this community site, on FaceBook, on www.herselffirst.com, and reachable through: sheilam@herselffirst.com. Wellness for women of all ages in all stages of life is critical to long-term success and well-being. Please let me know how I can help!

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Permalink Reply by Rebecca Saulsbury on June 5, 2011 at 9:56pm

I have found that bonding with other Duchenne families has helped. My son with Duchenne is 10 and a half, and his little brother is 7. We occasionally get together with a family that lives about an hour away (maybe once every two months) and between us we have five kids, three with Duchenne. I think it's been good for my unaffected kid to see other affected and unaffected siblings together. They all seem to understand each other so well.

We also have normalized the wheelchair and the drs, as much as possible, in the life that we live. There is still some strain on my younger son, like having to explain to his classmates why his brother can't walk, but we try to take those head on and matter-of-factly. I may even talk to his class too next year because it's come up so often.

Also, I make a concerted effort to NOT insist he help his brother, which I know is different than many people I have heard from here. My older son bosses him around and I've had to remind them both, I am the parent, it's my job to take care of these things. The reaction has been that my younger son happily volunteers to help sometimes, even lifting him from laying down to sitting position if I'm not there, not seeing his brother as a burden.

I do think it will be a different story when we get to the point of telling them both what the long term outlook is. Also, because of their ages, they will only have two more years together at the same schools, so that may be a little more isolating. But then again, it may give him the space to just forget Duchenne for a while, too.

These are just some of the things that have worked for us, so far. I hope you find what works for you and your family, too.

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Permalink Reply by Robin Ecklesdafer on September 2, 2011 at 9:23pm

This is something I worry about all the time. Daniel (5 years old), who is our middle child (right now) has DMD. Our daughter Rachael is 7 and our son Alex is 3. We also have another child due in January. I worry so much about how this will affect them. Especially as Daniel gets older. We really have no idea what to expect for Daniel's future, and have absolutely no idea how to prepare him or his siblings. I would love to read any suggestions people may have on how to help siblings cope with this situation.