Is there anyone out there that feels they have been "successful" dealing with the concerns of siblings of our boys? My daughter, now 6, has 2 brothers with "special needs". One brother, DMD (also 6), the other Down Syndrome. I am finding my daughter seems to be "acting out" more lately--feeling like she dosn't get much time alone with me and that her brother with DS takes so much more of my time. While I am trying to work that out, I thought perhaps some of you who have been thru this already might share what has been successful for your family.

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Hi Cindy -

I have a daughter who is five and a three year old with DMD. I have also found that my daughter acts out a lot. She demands constant attention. We have tried getting her counseling, but that didn't seem to be working. My newest strategy is to get her involved in things that are just for her. She just started Girl Scouts where her and I go together, and we enrolled her in T-Ball for this fall. I am hoping that by getting her involved in activities that are just for her, that it'll take some of the attention away from her brother's therapies, and place it back on her where she wants it. Also, I have been trying to do "mommy-daughter" stuff that only her and I do together. We leave "our boys" at home. I'm not sure if this will help you, but that's what we are trying with Sarah-Marie. I wish you luck!!!
-Jennifer Collier
My older daughter Charlyse is 3 and my son James is 4 (I also have a 6 month old daughter Saraya). Charlyse is not yet at the stage where she is really aware of what is going on, though she does know that James gets massages and has to go to physio. Every night when James gets his massage from Daddy, Charlyse and I sit together and read stories. Sometimes, we even give her a massage if she asks for one. Whenever we take James to physio, Charlyse and Saraya come with me and us "girls" go out for coffee whilst he is seeing his therapist. After physio, we all go to an indoor play centre and the older kids have an absolute blast. After reading posts from other parents about the trouble they have had with sibling jealousy, I am very conscious of Charlyse's feelings and try to do every thing I can to make sure she never feels left out. I am hoping these small things will make a difference. I just hope it's enough.
Joshua is 5 with DMD and Jacob, his brother, is 9 without. Jacob is old enough, but we have had many talks with him since we found out the diagnoses when Joshua was 6 weeks old. We explain everything to both of them in language they can understand. It has never been a secret and they both know the reasons for everything we do regarding DMD. Sometimes it can be stressful but that comes with any disease. It's a matter of treating them equal and giving them both one-on-one attention equally. It's worked for us so far... knock on wood!
We have a 14 year old , a 12 year old with DMD and a 6 year old with Hemophilia. I would say for the most part the kids are adjusted but once in a while when the 14 yo acts out, we find sometime later that it is definitely as a result of dealing with siblings with special needs. Almost always she brings up the subject that we spend so much of our time taking care of the boys. It is so important to spend extra one on one time (even if its extra "talk" time at bedtime, a movie, going for a walk). She has also let me know that when I talk about DMD or explain the future to someone that she would prefer that I not say it infront of her. She is well aware of Tyler's future and it makes her very sad to hear it. Unfortunately I think the sadness is with the siblings all the time, even if they don't talk about it. We try to make every day special and worthwhile inspite of living with DMD but still need to remember the siblings needs to feel loved, important and special too. I have learned to ask what our daughter is feeling and what I can do to help her.
Good luck, and hang in there!
I just want to bump this discussion to the top again.

I have 3 kids, one with DMD, and am currently pregnant with my 4th. Apart from the usual concerns like "Oh my god, how am I going to handle 4 kids" to "Oh my god, how am I going to handle 4 kids when the eldest has DMD", I also have the worries about what my non-affected kids are going to be going through as they grow up. I have heard stories about siblings having resentment for all the attention their brothers get, and becoming moody and withdrawn, not wanting to grow close to their brothers because they worry they will die and don't want to go through that loss. Can anyone tell me how they feel/felt and how did you cope? What can we, as parents, do to ensure all our kids feel loved and don't have any resentment towards their siblings. It is a hard thing to go through as a parent or a boy with DMD, but noone ever seems to think about the effect on siblings. I try hard to make sure my girls don't miss out on special times with me, but is it enough? I'm beginning to wonder what I might do differently. Any insight would be totally invaluable to me, and I am sure to many others.

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