The first time I talked to a friend about how I would probably someday be Alyssa’s guardian, I was relieved to find someone who understood! In fact, my friend’s parents had gone a step farther than mine and put it in their will. It’s something that I think a lot of special need siblings experience, but perhaps we don’t realize how it impacts us.
It’s hard for a teenager to be asked “When you’re both adults, will you care for your special needs sibling?” It’s hard for an 18-year old to be named a legal guardian to special needs individuals barely younger—or perhaps even older—than themselves. But for most of us, it’s a no-brainer. We love our special siblings. They’re (often) incapable of living on their own or caring for themselves long-term. So of course we’ll care for them.
Then one day it hit me what exactly that means. It will be different for each of us. For me, it means becoming responsible for a special needs adult who needs constant care and supervision. It means dealing with tantrums from a very strong, very strong-willed adult. It means assuming the financial responsibility, not only for the day-to-day living expenses, but possible medical expenses. It means the possibility of getting married and raising my children with my special sibling present. (Not a completely bad thing, but the thought of adult tantrums plus young children is not pleasant). It could mean finding an alternative living situation for my special sibling. It may mean finishing raising my children and continuing to care for my special sibling.
Because special needs is forever. And ever. And ever.
Good thing love is forever too.