This has been on my mind a lot lately – what does life look like after my son turns 21 and becomes eligible for services. As selfish as this may sound, it’s not just about what he wants – it’s also about what I want. As parents we’re responsible for helping our children find their way in the world, and when these children have disabilities sometimes this means we’re a more “hands-on” than other parents; but it does not (and should not) mean we are not allowed to have our own hopes and dreams for ourselves (although they may be modified to fit circumstances).
Start talking with your child about what life as an adult is going to look like for them. Do they really not want to live “on their own”, or are you too uncomfortable with the idea they are no longer in your house because you’re the only person “who can understand them”? If this were true, what’s going to happen if you die before they do?
I believe it’s easier for us, as parents, to maintain the status quo – justifying it with assertions that we know our children better than anyone else. While this is very likely true, it doesn’t mean someone else can’t get to know our children, and do a great job helping them – as well, or perish the thought, even better than we can; because the new caregiver is more open to pushing our children to stretch and explore their “limits”.
I struggle with this idea myself. I want my son to be independent, but I’m not willing to consider an agency Residential solution. Instead, I’m looking into self-directed, hiring supports as needed to allow my son to remain in our house. However, my long term goal is for me to move out; giving him the space and freedom he deserves as a young man. No, this isn’t going to happen right away; and I’m realistic enough to understand it may never happen – but it’s what we’re going to work towards.
I have seen my son overcome so much since his mom died that I am unwilling to draw a line in the sand and say “this is as far as he can go”. I don’t know what he’s capable of in the future; but seeing how far technology has come since he was born I’m very comfortable with the idea he could be “independent” in my lifetime.
I’ve changed how I’ve thought of independence – no longer does it just mean living by himself. Now I’ve adapted it to mean he has supports, after all who among us doesn’t (have you ever used your cell phone to calculate the tip or get directions). His supports may be fellow human beings, but it doesn’t make him any less independent as long as he is choosing what he wants to do and when (within in reason, I’m optimistic not foolish).
I encourage my fellow parents to push their children, explore what they are capable of and don’t give up when (not if) they fail. Speaking for myself, there have been MANY things I’m fairly competent at now that I couldn’t seem to get the hang of (I failed my driving exam 3 times). Just because it’s “easier” for us to do something doesn’t mean we should; in fact I would argue this is all the more reason to remove ourselves from the equation – it can be too difficult to sit back and watch when you just “know” you can jump in and get it done in 1/4 the time.
So ask yourself – what is one thing I’m currently doing for my child that they can take over? Even if it’s as simple as deciding what to eat for lunch, give them the option. If it’s something they’ve never done before expect it to take a while, so don’t do this if there will be a time crunch. And be ok with with whatever it is, at least for the first few times – it’s more important (in my opinion) to help them start thinking for themselves than worrying about the choices they’ve made (provided it’s not going to endanger them).