Don Meyer has been in giving voice to siblings in special needs families since 1982. The director of the Sibling Support Project, Don is probably best known for creating Sibshops, lively peer support groups for school-aged brothers and sisters of kids with special health, developmental, and mental health concerns. Currently, there are over 400 Sibshops worldwide. Don also created SibTeen, Sib20, and SibNet, online communities for young and adult brothers and sisters allowing thousands of siblings from around the world to connect with their peers. Don is the author of several books including Views from Our Shoes: Growing Up with a Brother or Sister with Special Needs and Thicker than Water, which features essays by adult siblings of people with disabilities.
I recently had the privilege of interviewing this pioneer in the area of special-needs sibling support. Please join me in exploring what the Church might learn from the successes of the Sibshop model as we serve siblings of all ages in our faith communities.
How would you describe the primary areas of concern to siblings?
Let me start off by saying that anything you can say about being the parent of someone with special needs, you can pretty much put “ditto” marks around for brothers and sisters. Time and time and again, a sibling’s experience parallels the parents’ experience and siblings have some unique experiences of their own. A significant difference is in the level of support available to siblings. While there are many different resources for parents, there are far fewer opportunities for brothers and sisters. It’s easy to see who is getting the short end of the stick.
Siblings are going to have the longest lasting relationship with the person who has special needs. It’s a relationship that is going to last a lifetime. A very long time. And many unique concerns will evolve over the family’s life span. When the day comes that mom and dad are no longer there to look after the affairs of the person with special needs, it’s likely going to be the brother and sister who will ensure their sibling is living a satisfying life in the community. Nobody logs more hours and minutes with that person who has disabilities than the siblings. And no classmate in an inclusive classroom will have a greater impact on the social development of a child with a disability than brothers or sisters will. Supporting siblings benefits everyone—especially the family member who has the disability.
Help us understand this concern that siblings are getting the “short end of the stick” as it relates to support.
Let me share an example to put this into perspective. Every day we have at least one new member in our online SibNet forum from the “Club Sandwich Generation.” (By that term I mean people who are coordinating care for aging parents, raising their own children and supporting a sibling with special needs.) This new member is almost always a sister. In fact, ninety-eight percent of the members in our online discussion forums are sisters. And research confirms that sisters are most often the point people when parents can no longer provide care. So, in large part, these sibling issues are women’s issues. In any case, this is a mighty full plate!
The new SibNet members often eventually post a note saying something like:“I’ve been reading stories here for a little while and have decided it’s time for me to join in. Before I introduce myself, I just want to say how glad I am to find this place! It’s thefirst timeI’ve ever found people who understand how I’ve been living all these years.” And this new member is in her forties!
Forty years is a very long time to wait for validation. We would never ask special needs parents to wait that long to meet their peers. This simply underscores the desperate need there is for siblings to connect. Siblings are waiting far too long to have a voice and receive support. We need to invite siblings out of the waiting rooms to a place of value they richly deserve.
In your view, what needs or opportunities exist within the church as it relates to siblings?
Siblings need a forum to connect with peers to talk about stuff with others walking down a similar path as well as support for putting their life into a broader perspective. I would hope churches realize that people with disabilities have gifts, but having a sibling with disabilities can be really difficult at times. At Sibshops, we make room for siblings to safely explore both the positives and negatives. So, I would encourage churches to offer support groups in their communities. It’s a rich, multi-faceted opportunity. Perhaps the biggest beneficiary of offering better support to the siblings is the person who has a disability. If you want to assure a positive long-term outcome for people with disabilities, you need to support their brothers and sisters throughout their lives.
Have Sibshops ever been offered with a faith-based focus or adapted to include the scriptures?
Sibshops are not specifically a faith-based effort but there are churches, Jewish community centers and other faith-based organizations utilizing them. I encourage people to partner with other like-minded organizations (e.g., Autism society, another church, children’s hospitals, schools) rather than everyone going off and doing it on their own. You’ll get more kids. You’ll have a more exciting event. When groups are larger, siblings can form many more relationships that will serve them well for decades.
You can adapt the model but really must make sure to offer opportunity for safe, candid conversation along with information and gentle, non-judgmental guidance. We are passionately devoted to providing “peer support and information in a lively, recreational context.” Sibshops should be decidedly fun to attend with opportunities to learn about services their sibs are getting and to talk about the good-and-not-so-good parts of having a sib with a disability with others who “get it.”
Do you have any words of caution for churches being intentional about supporting siblings?
The most important thing is that siblings are allowed to speak freely and candidly. We want to listen, validate and occasionally offer some gentle guidance. We don’t want to lay something on them about how they oughtto feel about the situation they’ve found themselves in. I wouldn’t mind people bringing religious content to that as long as it was allowing siblings to speak freely and candidly.
What resources do you recommend for siblings and parents?
The Sibling Support Projecthas several sibling initiatives: we help local communities start Sibshops; we published seven books on sibling issues; we offer workshops on sibling issues to parents and service providers, and we host very active closed Facebook groups for sibs. We have SibTeen for teens, Sib20 for siblings in their twenties, and SibNet for adults siblings of brothers and sisters with special needs. I would suggest churches check out these links:
How to Let Young Siblings Know That You Care (PDF version). Don Meyer, Cristina Breshears, and Patrick Martin
Adult Sibling Toolkits through the National Down Syndrome Congress