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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 Lori Ware on March 29, 2009 at 12:03am

Is your daughter on Facebook? I started a siblings of DMD group there. It is not real active, but several teenage siblings have joined....Tell her to look for it and ask and I will grant her permission to join. For privacy/security, I have kept the group private. She could connect ther with others kids...

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Permalink Reply by Christina on March 29, 2009 at 2:37pm

Thanks, Lori. She doesn't have a Facebook account, yet, but I'll see if she's interested. That's a great idea.

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Permalink Reply by Kim Innabi on March 29, 2009 at 4:45pm

Hi Christina:

My son Nicholas, who has DMD is 12. My daughter Jordan, is going to be 14 in a week and I have a younger son who is 10. My daughter doesn't show many outward signs of being bothered by her brother's DMD, but I found out how much it does affects her when I read the essay she wrote for her high school applications. She doesn't talk about it much, and will change the subject if I try to approach her about it, but I know that she is aware of ALL of the problems associated with it and what the future holds for him- especially lately with all the talk going on around our house about getting a power wheelchair and my son needing a BiPap already. At one point she even made a comment about how it wasn't really important for him to go to college, and that I should home school him. They are currently in the same school, but she will be starting a new school in the Fall, which is all girls, so they won't ever be in the same school again. They go to Catholic school, and she has made more than one comment about "thinking" everybody looks at her if the priest makes reference to someone ill or with a disease in his talks during Mass. My daughter is on Facebook, but she hasn't joined the DMD Siblings group (she doesn't know about it though).

Suprisingly, Jonathan seems to be the one with the biggest noticeable problem at the moment with his brother. He will not touch anything, or eat or drink anything, that he thinks Nicholas has touched. He won't use the same bathroom and avoids even using hand towels that he thinks Nicholas has touched. I'm beginning to think that he feels like he may catch DMD by being too close to his brother. Nicholas is on steroids and is very short and a bit overweight, and he can't walk more than a few feet - I think Jonathan worries that this will happen to him also.

I worry about all of them too. I have been trying to give my other two kids a little more attention and not to focus so much on Nicholas's needs - but you know how hard that is!!! Good luck and let me know if there is anything I can do to help you - sometimes just talking helps. I don't know where you live, but I live in Pasadena CA. It helps too if you can get together with other moms with kids close to the same age so they can compare stories in person and see that they are not alone. All the best to you,

Kim

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Permalink Reply by Jerry Dallapè on March 29, 2009 at 7:34pm

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 Holly Flavin on March 31, 2009 at 11:07am

Hi Christina,

My son Jason who has DMD is 12. I also have a 16 year old son. He also doesn't like to talk about DMD and how it will affect Jason in the future, but he knows the reality of the situation. He will not open up to me about how he feels. Since I am a single mom, I do rely on him to help sometimes since he is bigger and stronger than I am. I do feel that it has caused him some issues in school. He is very smart, but doesn't like school and refuses to do much of his homework. He is a good kid, though. I have asked him in the past if he wants to go to the DMD support group that Jason and I attend (Jason plays with the other kids with DMD that come with their parents), but he always refuses. I wish I knew better how to handle this situation as well.

I hope you find a solution that helps.

Take Care,
Holly

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Permalink Reply by Joanne Keeley on April 2, 2009 at 3:14pm

Families have dmd- not one member goes unscathed. I have had every one of the children in counseling and even then, it will only help if they are willing to open up...
My son Dylan is 20 months younger than my effected son Wyatt and my daughter Sarah is 2 years younger than Dylan. They don't have any truly solid relationships and the house is a pressure cooker at times. Wyatt is on the brink of going into the wheelchair and the pressure is really on for all of us!
We never really discuss the future because I still hold onto my hope. I won't take away theirs.
The counseling at school is a break for them and if they feel the need to open up, they will. I have told the counselors that when they feel that the kids need more than they can provide they can let me know.
There are sib-groups out there, but all of us are very specific in our needs. Again, I believe that the kids have to be open to help or they won't be helped. It's a very tough life and we have more stresses than most people out there could handle. I can't imagine being any one of my kids and my friends tell me that they don't know how I do it!
I think that Wyatt is the healthiest person in the house emotionally at this point...
Good luck to you and to all of us!
Joanne

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Permalink Reply by Tammy on May 29, 2009 at 12:04pm

This is such a needed topic. My daughter is going to be 12 next month...DMD affects the whole family in many different ways. If anyone has a family member that would want to make friends with Alicia, that would be great??? When Alicia was very little she just told people Josh had broken legs...just before his tranplant it all hit her like a ton of bricks. She adjusts well however it would be nice for her to have someone, her age, who is coping with the same.

Tammy

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Permalink Reply by Lori Ware on May 31, 2009 at 9:20pm

My daughters just turned 13 and 14. I am sure my 13y/o would love to be a penpal....send me a private message adn we can work out the details if you want.

Tammy said:

This is such a needed topic. My daughter is going to be 12 next month...DMD affects the whole family in many different ways. If anyone has a family member that would want to make friends with Alicia, that would be great??? When Alicia was very little she just told people Josh had broken legs...just before his tranplant it all hit her like a ton of bricks. She adjusts well however it would be nice for her to have someone, her age, who is coping with the same.

Tammy

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Permalink Reply by Kim King on January 13, 2010 at 8:30pm

Lori
I think this is something my daughter would like to join. What is the name of the group?
Thanks

Lori Ware said:

Is your daughter on Facebook? I started a siblings of DMD group there. It is not real active, but several teenage siblings have joined....Tell her to look for it and ask and I will grant her permission to join. For privacy/security, I have kept the group private. She could connect ther with others kids...

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Permalink Reply by Lori Ware on January 14, 2010 at 12:14pm

I will have to look when I get home (FB is blocked at work) and I will let you know. Also, at conference this summer (in Denver), many families are bringing all their kids (since it is in Denver...fun vacation) and the siblings will get to meet.

Kim King said:

Lori
I think this is something my daughter would like to join. What is the name of the group?
Thanks

Lori Ware said:
Is your daughter on Facebook? I started a siblings of DMD group there. It is not real active, but several teenage siblings have joined....Tell her to look for it and ask and I will grant her permission to join. For privacy/security, I have kept the group private. She could connect ther with others kids...