Parents of children with special needs often approach their child's graduation from public school with panic. We wonder if our children are prepared for post-secondary education, a job, living independently, and having friends. We wonder what assistance is available. And, especially, we wonder how to provide all these things for the lifetime of our children.
Personal networks can provide the on-going support needed to build a good life for the long haul. The idea of personal networks comes from a parent organization in Vancouver (British Columbia, Canada) called PLAN (Planned Lifetime Advocacy Network). Their book, A Good Life, describes parental fears for children with disabilities and then presents a tool for supporting a person over time. From A Good Life:
“A Personal Network is a team of people who have come together for one single purpose: to befriend, support, and advocate for the person with the disability. It's their job to worry, to oversee, and to plan in advance, to anticipate, to ‘be on top of.’ A healthy Personal Network is one where all members of the network are in touch with each other. They coordinate their support. They assign responsibility among themselves.”
When my son, Will, was 20, I started worrying about his long-term quality of life, and so we started a network that still meets now, 12 years later. When we meet, we have a potluck, catch up on our lives, and then update the group about Will's activities and well-being. They have all gotten to know each other, and Will is always present and enjoys each person.
But gradually, as the group has matured, the members have become more aware of their responsibility as a personal network for Will and the work of building a web of support for the day when we parents are less active or no longer available. So, they have begun to learn more about Will's needs and assets and to see distinct roles for themselves. One member knows best about Will's daily care, so that area will be her specialty. Another has a financial background and is best suited to watch over Will's resources. The parent of another child with disabilities is part of the group and knows know to manage the CLASS program. Finally, Will's brother, who has been active in the network from the beginning, has stated that with the network’s support, he is willing to be Will's guardian!
Another TxP2P parent, Denise Sonleitner, has started a network for her son, Maverick, and has told me:
“We started a person-centered plan group for Maverick in elementary school. PCP's are a great tool, but I had bigger concerns looming about Maverick's future, when his dad and I could no longer care for him. People wanted to help in some way, but none of us knew how. When I heard about personal networks, I decided to give it a try. The best thing to result from having a network is feeling hopeful about Maverick's future – creating a community of people who come together for one purpose (i.e. Maverick) and are, over time, becoming closer, more cohesive, and more vested in Maverick's future.”
When parents hear about networks, they are intrigued by the concept but always have lots of questions.
“Who to ask?” Look at the people in your life. Think of relatives who've said, “Let me know how I can help.” Being a network member will provide a way to help in a safe environment, where it's okay to ask questions. Think of people you know who are young and uncommitted or older and just retired, people with a bit more time and effort available to spend on a “cause,” and maybe even people who are searching for a network for themselves. Or maybe another parent – I'll be on your network if you'll be on mine! Here's a list to spark ideas:
“How do I ask?” Remember that you are asking for volunteers. Write an invitation explaining the concept of a network, what time commitment is involved, and how each person might contribute.
“How do I motivate people to join?” Describe the network as something that will be positive for all participants, instead of asking people for help because we feel needy and overwhelmed. Taking a page from A Good Life, learn to talk about your child in positive terms: Instead of saying Will needs help in all life areas, I explain what people will learn from being with Will about living in the moment, humor, and unconditional love. And remember: If someone turns you down, don't take it personally. Your friend is still a friend but doesn't have time or isn't the right fit for this kind of endeavor.
“What do networks do?” A network might be 3 people for someone who doesn't like crowds or 50 for someone who loves a party. It might be a group focused on just one issue, such as finding a job or making social connections, or a support for the long haul. A shared online calendar is the perfect tool to schedule outings with network members. A network looks different for every focus person. (A focus person is the person at the center of the network.)
What can you do now, at whatever age your child is, to promote the possibility of creating a network someday?
I have observed that networks expand the energy, resources, and community connections available from one family to a whole range of people. A network can renew hope for parents after years of losing services and hearing about what your child can't do; networks give families the sense that there are people out there who care and who will share their time and effort.
Our lives as parents of children with disabilities are often spent worrying and advocating, yet a time comes when we must say, “Enough.” I found that as my son Will grew up, I began to see him as okay the way he is. Of course I continue to seek ways for him to learn and grow, but I have begun to think of him as a person in his own right, with gifts and a strong personality beyond my control! I am ready to let my child go into the world, to see what others have to offer him, and what he has to offer others. And that's where Will's network comes in – it provides a safe way to make that transition. We can begin to imagine a life for him that is safe and enriched but in which his parents are not the main force in his life, where others are important to him. Starting to think about networks can be the first step toward that new life.
To learn more about networks:
Texas Parent to Parent has created a how-to for helping parents start their own networks. Scroll to the bottom of TxP2P’s Pathways: Life After Graduation page to learn more. We are also creating a program to train network facilitators.
Go to The Arc of Texas website and click on Microboard Collaboration at the bottom of the home page. A microboard is a personal network that has been incorporated as a nonprofit.
There may come a time when a doctor suggests your child be tested for a possible medical condition. Deciding whether or not to do the testing can be a difficult decision for parents. When is it necessary and when is it just too much information that you may never use?