Anyway, while I was watching him, I decided to search online for resources for the siblings of the disabled. It's something I've thought about a lot recently.
The other day, I talked to my mom about what it was like to raise typically-developing kids along with a kid like James, and what she wished she had known about raising us with James.
Nothing she said had anything to do with us. She wished she had known how to make a giant size crib for James. She wished she had known how to deal with taking him to the hospital on short notice. How to deal with his teachers. Et cetera. I kept on saying, "but that has nothing to do with your other kids, Mom." And she would say, "Oh, I guess you're right. Hmm. I'll have to think about that." The whole conversation kind of validated a lot of things I've suspected over the years.
So anyway, I started googling. I found about 9 separate articles/websites dealing with "sibling" issues, and then the further you go back in Google, those 9 websites just cycle through. So there's really not a lot out there, at least that I have found so far.
But I did find this really useful website, and this site, which seems to be targeted toward younger kids, but which has a great list of stuff about sibs on the home page. I found a Facebook group for siblings. I applied to join.
I learned that I and my younger siblings are called "sibs." It's the slang term for, obviously, typically-developing siblings of the handicapped. There are approximately 7 million of us in the United States (and 1 million in the UK, which seems to have way better sibling resources than the US does, for reasons I don't understand).
Finding this stuff--even though it's just nine websites and a Facebook page--has been eye-opening. Not all of it is helpful to me. I'll admit I was pretty annoyed to find that most of the sib pages I found were targeted toward sibs of those with ASD. But I guess there are way more people out there with ASD than there are with orphan diseases like my brother has.
I have been seeing that sibs of people with less severe handicaps than my brother have similar issues to me. It's, again, eye-opening. So many of us feel that guilt, and that anger, and frustration, and I never would have known. It's like this page explains,
Until siblings meet other siblings at sibling groups they often believe that they are the only ones. It is not enough to point out another sibling and say that "He or she also has a brother with autism". Siblings need to hear other children talking about their experiences of family life in order to really know that other people understand what it is like for them.
I guess in retrospect it would be obvious that most siblings of the disabled share similar stresses--who will take care of the brother today? Tomorrow? What will happen if my parents die or get sick and my sibling still needs care? Etc. But I always felt pretty alone in those concerns until I started reading other people's stories.
I thought it was interesting that every single site I found noted the role of the oldest sister in the care of the disabled sibling. Every site mentioned it at least once, how the oldest sister in normal families is usually the one to care for the aging parents, and how that same sister in "specially blended families" (of typical and disabled siblings) ends up taking care of the parents AND the handicapped kid too.
It was pretty depressing to discover, but also kind of validating. The responsibilities I have faced are unique because of my role as the oldest sister in this family. I appreciated that at this site they emphasized the importance of including both sons and daughters in planning regarding the handicapped sibling.
Anyway. I realized as I was reading these sites that I have several friends who find themselves in the same situation I do, with a dying or chronically ill or just plain disabled sibling. Hopefully the few sites I linked can be helpful to you guys, too.
