Personal Networks

ROSEMARY: One of the biggest fears, the overwhelming fear, of parents of children with disabilities, I think, is what happens to my child when I can no longer take care of them? If you scratch the surface, almost every parent will reveal to you that that is a deep seated fear. And out of 25 years of working in this arena, trying to learn about what's going on around the world, in the country and in Texas, the concept that I've discovered that answers that question-- the only concept that I've ever found that I felt really answers that question and helps with that fear-- is the concept of a personal network. And I got this idea out of a organization in Vancouver called PLAN, P-L-A-N. You can go to plan.ca to learn more. But the concept is that a person who is at risk of isolation becomes the center of a small group of people who commit to supporting that person. They're volunteers at the time when they're in the network. They're not paid. And so it increases the number of people in a person's life who care about them and are concerned about their quality of life. So it can be organized in so many different ways, but a first hurdle is for a parent to get over the worry of how do I ask for help? We've all been trained, I can't ask for help. I've got to do all this by myself. And how who would want to be in such a network? I mean, my child's a mess. How do I get help with my child? So what I've learned is that parents need to start broadening their concept and know that it does take a village for a person who has high needs. And so learning that it's OK to ask for help, but also reaching out to people in your life that actually want to help but have never known how. I've seen that networks really fill a void there, where a relative would say, let me know when I can help. But there's never been a conversation about what that looks like and how that becomes concrete. So asking that person to join in a little effort to support the person at risk of isolation, or the person with high needs, over even just a short few years, say at a crucial point of moving from school to life after graduation. And then possibly, that group can take on a life of its own and continue through time. My own son has a network that started 10 years ago, when he was 20. And we're still together. We still meet periodically. And what I've seen is that the people in the network have come to care about each other. So it's formed a group of people that are connected, but meet with the purpose of looking at Will's needs. And we usually just have a party. We have a pot luck. We drink some wine. Will's always there. His brother's always there, and then some family friends, some other parents, some professionals along the way that have become attached all sit down together and say, what's up with Will? What are his needs now? And then ultimately, what can we do to support this person? And we say it in these words, if the parents are on a plane that falls out of the sky. That's our way of talking about it. How could this group kick into gear and really help bridge life for this child, or this adult now, as someone who's lost their supports? So it's a very hard conversation to have, but I encourage families to start thinking along the lines, who are the assets in our lives? How can I start reaching out to other people, learning to ask, learning to talk with others about our vision for the future? And then the key concept here that I learned from this organization in Vancouver, instead of asking people to join our network to help poor us, we're so pathetic, we're so overwhelmed, we're such needy people, what you do is ask people to enjoy Will Alexander, that you invite people to understand his gifts, his talents, his contributions. What will you learn and gain by joining his network? And it's really worked. We've seen people who didn't know Will very well who now really like to take him out for Chinese food. Or people who've said to me, you know, when I'm really depressed, just being around will for a few minutes makes me forget the past and the worries about the future and go, I'm in to present and it's fun, because Will makes me be in this moment. So starting to focus from-- changing that focus from what are the needs to what are the joys, the assets, the pleasures that we all can take in Will's presence and from this small group? And I add one little footnote, is the networks are especially popular with siblings. So for a family to assume forever that the siblings are going to take care of Fred when I'm gone, when are you having that conversation with that person, and then bringing in supports for the sibling so they know that they're not alone in the future, as they help to support the person at the center of this network. So it's the most powerful concept that I've ever discovered as a way to really guarantee, as much as we can guarantee, high quality of life for a person throughout their lives. SPEAKER 2: Parents of kids who are still in school, you might be listening to Rosemary right now and thinking, this is a great idea for later. There are ways you can begin thinking about the concept of a personal network now, while your kid is still young. It's tempting for us, as parents with kids who are currently in school, to really view that ARD committee, that IEP team, those supporters at school as their network, because those professionals are dedicated, each from their different disciplines, to coming together regularly, to making a plan to support our kids, to helping them move down the road, that there is that team feel among ARD and IEP committees. There is that supportive feel for us as parents, when that team is really functioning well. We need to be careful, though, as parents, not to be short sighted and rely on that team to provide that function later. Because once our kids graduate, we're not going to have access to that ARD committee in order to serve those purposes. What we can do now, as parents of younger kids, is to be thinking about who are those natural supports who could become a part of a current network or a future network? We might find those resources in a scout troop or in our religious congregation or in the neighborhood. It might be the parents of a sibling's friend. They're everywhere. And one way that we can ensure a smooth transition from school age, where we have that support of an ARD committee, to after 18 or after 22, where ideally, we would want our adult child's network to already be intact, or at least coming in, is for us as parents of younger kids to really be thinking about where we can start building a network early.