One of the common phenomenon amongst parents of kids with special needs is a tendency to make sure we’re getting all the services we can to help our kids.
Totally natural, totally understandable, totally something I do myself.
Recently, I was challenged to think of it the opposite way: how can we do more with “natural” supports and rely less on the system that provides paid supports?
Woah. That kind of blew my mind. What did they mean, take as little from paid supports as we can? And why the heck should I do that when I’ve been paying taxes since I turned 15?
I was getting all hot and bothered in the training session until this idea was fleshed out a bit further. It’s not that we shouldn’t use government funded supports. Indeed, in many cases these are either the only supports available or the only way we can get help for our kids. It’s not about saving money. (And to be clear: I am all for government-funded supports.)
It’s about sustainable supports and reciprocal relationships for our kids versus being seen as “people who just need help.”
So what’s a natural support? It’s a support that exists outside the realm of paid support, and usually it’s found in your community.
A perfect example is a person – let’s say her name is Grace – who wants to be in a knitting group. For a while, Grace has a paid support person bring her to and from the knitting group. As time goes by, she gets to know people in the group and they get to know her. They enjoy each other’s company. It becomes a reciprocal relationship, just like any friendship between any two people, regardless of ability. Eventually, one of the people offers to give Grace a ride to and from the group, just like any two people who are going to the same event and live in the same area.
And there you have it – a natural support. This is someone who is going and from the activity anyway, and someone who enjoys Grace’s company. Grace now has a connection to her community that exists outside her family/guardian. That connection is absolutely priceless. Grace is now a stakeholder in her own community, and someone is a stakeholder in Grace. It’s a friendship, it’s reciprocal.
I was pretty gobsmacked by this concept, I have to be honest. And it definitely opened my eyes to a deep-seated fear of mine – one I didn’t realize was coloring so much of what I feel about my daughter’s future. This concept of natural supports absolutely depends on parents accepting that people with “typical” abilities can be counted on without being paid and it relies on us accepting that people will like our kids for who they are, regardless of ability. I have a huge fear of Rowenna not developing genuine friendships with those outside the disabled community. I worry that people will just condescend to her, pat her on the head, spend time with her to fulfill required volunteer hours.
But it doesn’t have to be that way.
When my daughter was just a few months old, I consulted someone who has an adult daughter with the same diagnosis. She told me that I needed to cast my net wide and that I needed to cast it equally into the Down syndrome world and the “typical” world. She said it would be the only way my daughter could truly be independent.
I don’t think I understood that until someone helped me see natural supports and paid supports. Don’t we all use natural supports? When I have an awful day, I know which friend I can call. When I get a flat and I need help with my daughter while I figure it out, I know who to call. When I want to get together and knit, I know who will do it.
So why wouldn’t I consider the same types of relationships for my daughter?
What do you think of this idea of natural supports?