Personal Networks: Building Relationships for the Long Haul

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Parents of children with special needs often panic when their child is ready to graduate from high school. Will they continue their education? Will they get a job? Will they live independently and have friends? We wonder what assistance is available. 

We especially wonder how we’ll help them get these things.

Personal networks can support a good life for the long haul. The idea comes from a parent organization in Vancouver, Canada, called Planned Lifetime Advocacy Network (PLAN). Their book, “A Good Life,” describes how parents fear for their children with disabilities. It then presents a tool for supporting a person over time. 

Here is an excerpt 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. So, we started a network that still meets 12 years later. When we meet, we have a potluck, catch up on our lives, and then update the group about Will. We’ve all gotten to know each other. Will is always present and enjoys having everyone attend.

As the group has matured, we’ve each become more aware of our responsibility as a personal network. We think about what will happen when we’re no longer available or less involved. Over time, we’ve learned more and more about Will and his needs. And we’ve assigned roles for ourselves. 

One of us specializes in Will’s daily care. Another has a financial background and watches over Will's money. The parent of another child with disabilities is part of the group and knows a lot about community-based living. Will's brother, who’s been active in the network from the beginning, is willing to act as his guardian.

Another parent, Denise Sonleitner, has started a network for her son, Maverick. Here’s what she said:

We started a person-centered plan (PCP) group for Maverick in elementary school. PCPs are a great tool. But I had bigger concerns about when his dad and I could no longer care for him. People wanted to help, but none of us knew how. When I heard about personal networks, I decided to give it a try. The best thing about 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.

Getting Started

When parents hear about networks, they always have lots of questions.

Who do I ask?

Look at the people in your life. Think of relatives who've said, “Let me know how I can help.” Network members should feel safe to ask questions. Think of people you know who are young and uncommitted or older and just retired. Consider people who have the time to spend on a “cause,” and maybe even people in search of their own network. Sometimes it’s another parent who needs you to join their own network. 

Here's a list to spark ideas on who could join a network:

• Family, friends and siblings.
• Your child's friends or peers at school.
• Church members and neighbors.
• People in a club or interest group.
• Retirees.
• Other parents.
• People who have at some time worked with your child.

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?

Let them know how fulfilling the work is. “A Good Life” says to talk about your child in positive terms. Don’t focus on what Will needs help with. Focus instead on how being with Will teaches you the value of humor, unconditional love and living in the moment. 

And remember: Don't take it personally if someone turns you down. Even if they’re your friend, being in a network isn’t for everyone.

What makes a network a network?

A network can be three people or 50. It can be a group focused on one challenge or many challenges. Maybe it’s about finding a job or making social connections. Maybe it’s focused on long-term support. 

It can be any size and focus on the challenges you think are most important.

How does a network work?

A shared online calendar is a great place to start. A network looks different for every focus person (the person at the center of the network).

Here are some things you can start doing now to make a network more effective:

• Make time to develop your own relationships.
• Encourage your child's interests and hobbies, which can become a link to a group.
• Encourage your child's social skills.
• Learn to describe your child in terms of their gifts and talents.
• Share your vision of your child's future with people who are important to your child.
• Open up your child's schedule to spend time with other people.
• Have faith in your child and your community.

Shifting Our Perspective

Networks bring energy, resources and new connections. They can renew hope for parents after years of struggle. Networks let families know that there are people who care and are ready to give.

Parents of children with disabilities spend time worrying and advocating. But a time comes when we must choose hope. 

As my son Will grew up, I began to see him as OK with the way he is. I still find ways for him to learn and grow. But he’s his own person with gifts and a strong personality. I’m ready to let him go into the world and see what it has to offer to him — and what he has to offer others. 

That's where Will's network comes in. It provides a safe way to make that transition. We can begin to imagine an independent life for him where we aren’t the only ones behind the wheel. Starting to think about networks can be the first step toward that new life.

To learn more about networks, visit the PLAN website or visit the Personal Network page on this website. 

Texas Parent to Parent has also created a how-to for helping parents start their networks. Scroll to the bottom of the Pathways: Life After Graduation page to learn more.