Well here i am again. A mother of a child with Duchenne. Yet at this point my main struggle is not with my child inflicted with this horrible disease, it with my oldest child. Brayden is 14, and has the world at his figer tips. he can do anything he wants with his life. Yet, I can't even get him to do his homework or pick up afer himself. If he walked any slowr, he'd be sitting on his ass. (sorry if I offened anyone). I just don't know what to do with him. I have him in counseling, but that is of no help. At this point, less than 2 months after diagnose for his brother, all I can see his him pushing aside every opportunity his brother will not have. My anger is growing day by day.
sorry about the spelling. I didn't check it first. just hope you get my point.
You could be describing my kids. I have a 12 yr old doing what yours is doing. But this is 4 yrs after dx of my 9yr old. Done individual therapy. Quit that. I'm thinking therapy for sibs of kids with life-ending diseases. Family therapy might help both of our families. I think it's hard when the family focus swings to the DMD kid and the sibs are left in the wake. I'm trying to explain to my husband that he should not get so angry at our 12 yr old. I don't quite know the right wording but the sibs really need to have some sense of normalcy, have just as much attention as the DMD kid(s). I'm imagining that the impact of DMD on your son is very confusing like here's his little bro is 'hurt', and the attention that the little guy is getting even on a sub-conscious level. The vibes can throw every thing for a loop. Big bro is probably feeling sadness and anger at the same time. This is a process. You have my deepest sympathy and empathy. I just keep a mantra in my head: You have today, in the moment, make it your best that you can, we just don't know about tomorrow, it's not now. Hang in there, Sister ; )
Through the years, I have needed to give my other son without DMD almost just as much support but in totally different ways. I remember feeling the same way you expressed, I still do sometimes. My other son has all these opportunities my son with DMD won't have so it's hard to watch him when he goes through times of no motivation or self pity. I was lucky enough to take this class as part of my job early on called Sibshops. You can google Donald Meyer with the Sibling Support project. Brilliant stuff. They had a panel fo siblings discussing the effects of thier siblings disorders and it was heart wrenching. It impacts al of us and we need to remember they are in the grief cycle too. The grief cycle looks very different on children than adults. Here's what I learned and what I did: we started a local sibshop. This was a recreational play group for kids with brothers or sisters with special needs. It didn't need to be DMD specific because they all have similar concerns. The meetings are play based but allow them to express what's going on. We also got an older teen as a mentor that could take him places, especially when my other son had medical appts, PT etc. We learned to make sure to allow him to have his own life even though ours was consumed with DMD so I really pushed him to be out with his friends. I talked to the parents of the kids he hung out with at school and set up times they would take him. I also take both my boys to do seperate things. I recently asked my other son if we could go do anything without his brother, what would he want to do? He said "rollercoasters". So we are going by ourselves for the day. There are times where I also have to tell him to suck it up. I do. But I also remember that he has a right to feel however he is feeling and I try not to control that, just be supportive. It's been 9 years now since our diagnosis and I have two really happy children. It was really rough for a few years but it gets better- I promise. Hang in there, both your children are lucky to have you! PS I don't see the spelling either, I'm sure I have a ton of typos too.
Jill: could not have said it better ; ) thanks Jill