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Someone told me recently that the health risks associated with prolonged social isolation are equivalent to smoking 15 cigarettes a day. This terrifies me, especially because many young people with disabilities have trouble making and maintaining social connections outside of friends and caregivers.
My dear friend, Kathleen, has researched this topic for a while and is exploring a potential solution for her daughter, Grace. A friendly, high-spirited 23-year-old with Congenital Myotonic Dsystrophy, Grace has lots of interests – but not enough people in her life with whom to pursue or enjoy them. Today’s newsletter features a guest essay by Kathleen about her family’s efforts to change that. I so appreciate her sharing this perspective and experience to help inform readers.
Because social challenges don’t seem to get easier with age, many parents have stories of their own on this topic. Individuals with disabilities are often included up through high school, but parents say that moving into adult life can often feel like “falling off a cliff” socially. Friends leave for college or careers, and young people with disabilities struggle to make new connections. For those who desire it, dating presents other concerns and issues (some of which we’ve addressed in this newsletter).
Although there are no easy answers, parents like Kathleen are working hard to build possible solutions. One special sibling on Long Island also created an app called Making Authentic Friendships to help young adults with disabilities forge new relationships more safely. If you’ve tried it, please share your experience below.
Please also use the link below to share what’s working in your world. Let’s see what friendships can bloom this spring and beyond.
Don’t walk behind me, I may not lead.
Don’t walk in front of me, I may not follow.
Just walk beside me and be my friend.
- Albert Camus
There’s nothing like having friends – people with whom to share and care with, laugh and cry with, and simply to be with. Friendships are important to living an enriching life and keep us from feeling isolated. Research shows that friendships lead to a sense of belonging, feeling happier and living longer lives.
Sadly, individuals with intellectual and developmental disabilities (I/DD) are typically less fortunate when it comes to true friendships they can count on for visiting, sharing, listening and just being there in tough times.
What does this mean for those we love who have I/DD? And what can we do to change this paradigm?
A while ago I was introduced to the concept of “circles.” It occurred to me that I have an organic circle, but my daughter does not. Nor can she easily develop one by herself. I began researching circle-building and quickly discovered that:
· “Friendship Circles” are part of many Jewish communities;
· They are an important way to build community for individuals with I/DD; and
· Teachers in some schools are recognizing marginalized individuals and talking with students about how to be friends with one another.
In addition to circles of friendship, I have also heard about creating a circle of care providers and back-up carers. Some people I know have developed a social circle based on shared interests. I imagine one could create a circle for transportation or even around support for work and appointments.
The head of a service agency once told me that the most successful home she serves is that of a young man who lives on his own, is nonverbal and has many medical issues. His 24/7 staff are the happiest and have the most constancy because this man’s mother has created a circle of friends who are always stopping by. This mom calls it her “covenant of care.” Staff report that they appreciate the company and support of the “covenant” members.
It is not always as easy for individuals with I/DD to form circles on their own, however. If you were to ask my daughter whether she has friends, she will say yes. Then she will list them. In nearly every instance, the people she lists will be people she hasn’t seen or spoken with since leaving school a few years ago. Except for two of them, who now live away, the others aren’t really friends.
But Grace is tired of being with her mom and dad all the time. And while we love our daughter, we want to have a more typical parent/young adult relationship with her. We want her to spend social time with other people—meaningful friends. So we are helping her build the circle she needs.
Although this is something we could do on our own, we sought direction and help from Starfire, an organization that works to build community around individuals with intellectual disabilities. Together, we brainstormed our vision for Grace’s circle and how to get it started. First, Grace and I made a long list of people who know and value her. Then Bridget from Starfire became the neutral party to ask each potential circle member if they’d like to participate. We were thrilled when six of the seven people we came up with agreed to be part of a circle with Grace.
To kick things off, Grace decided to host a pizza party for her circle. Everyone came, and Grace and Bridget facilitated the discussion with lively questions so people could get to know one another. We collected birthdates and contact info so Grace can be sure to reach out on a friend’s birthday.
Importantly, my husband and I stayed out on our porch while Grace entertained her guests (with Bridget’s support). We could hear lots of laughter and chatting. Someone even asked, “what do we do next?”
Since this initial gathering, Grace has enjoyed reading one day a week with a friend, going to dog shows with another, and just getting together to hang out. While she needs a reminder and support to reach out to her circle, our daughter is eager to do so. Importantly, members of her circle are also reaching out to Grace. She and we are delighted.
As we develop Grace’s circle, we hope her life becomes filled with some wonderful friendships and experiences. We also hope that circle friends develop a better relationship with Grace and with each other. And we feel strongly that this be a two-way street, requiring Grace to acknowledge her circle, call on birthdays, check in when someone is sick, and celebrate mutual milestones. After all, this can’t only be about her.
Secrets for Success
There is no prescribed way to form a circle. However, you may want to start with a Circle Map which helps to clarify who is in one’s life and how. Some suggestions for forming a circle:
Include your loved one in the process as much as possible.
Develop a vision for the circle.
Start out small; identify the low hanging fruit in your life or your loved one’s life and invite them.
Be prepared with expectations for the circle and each friend.
Our next steps for Grace’s circle are:
Determine how frequently the whole circle gets together.
Develop a communications tool to share what Grace and her circle friends are doing together.
Figure out how to include family and friends who live far away but want to be “in the know.”
Grow the circle because we know that “life happens.” Someone may have to drop out completely or take a hiatus. With a larger circle, the impact will be felt less.
Encourage circle members to be in touch with each other to do something together with Grace and to arrange for a substitute when they need to cancel plans.
For those who would like more information on this topic, I recommend the work of Jack Pearpoint, Marsha Forest and Judith Snow and these books: From Behind the Piano and Waddy Welcome (also available on Amazon).
Who do you know who might benefit from building a circle?
Who might you offer to become a “circle member” for?
Another Normal is a free e-newsletter for parents, caregivers and others committed to helping young adults with disabilities bloom and grow. The archive of issues includes curated news and information on topics such as employment, independent living, government supports, disability rights, sexuality, travel, recreation and more. If this copy was forwarded to you, sign-up for your own copy below. And welcome to our community.