My interview with Kay Sidway of the Children's Place and Parent Education Center brought back memories of my experiences moving to Concord, New Hampshire from Rhode Island as a newly-wed with a 7 year old boy and a baby on the way. My 1^st year here was busy with establishing a new life away from all my professional and personal supports back home.  My husband's job sometimes entailed long- days, and some moments, I felt like a single mother all over again. During my baby's 1^st year, the loneliness was tough.

Playground at The Children's Place

One day as I was packing up some out-grown baby items, I came across a Welcome New Baby packet and inside was my "golden ticket" --A pamphlet from The Children's Place! I read it from cover to cover, and I WAS INTRIGUED.  I called the very next day, and within hours, my toddler and I were at the TCP playing on the playground, and inside--more childhood treasures!  

I met the most wonderful staff and parent volunteers there.  I was talking to ADULTS about topics and issues, fears and joys that I CARED ABOUT.   Children's activities were age-appropriate, and the parent to parent camaraderie was priceless.  Another great benefit was the volunteer program where parents volunteered at the center to support staff and visiting families, and earned coupons towards childcare services.  On those days where I had a dentist appointment, or any other appointment, I would bring my toddler to TCP for childcare, and pay with the coupons I had earned volunteering.  My son enjoyed the center and I went to my appointments

stress-free! 

 Six months later we moved to a town in southern NH, and although I was sad to not be close enough to access TCP, I felt that I was given the skills necessary to connect with parents informally and consistently in playgroups in my new neighborhood.  I am very grateful to TCP for their support, guidance and positive experiences."

For more information about The Children's Place and Parent Education Center visit their website.

Beginning the Journey: the Diagnosis 

At the ages of 4 and 6, our two boys, Ben and Sam, were diagnosed with Duchenne Muscular Dystrophy.  DMD is a progressive muscle wasting disease that would put them in wheelchairs by the age of 10 or 12 and take their lives in their teens or twenties. At the same time, we were told that our 3-year old daughter Lydia was a carrier who would most likely not manifest symptoms but could potentially pass the genetic defect onto her own children.

A Friend and Lifeline for the Journey

With all of the agonizing pain and deep sorrow that accompanies such a devastating diagnosis, my heart cry was that God would send me a friend....another mom who had gone before me on this frightening journey of DMD. God was gracious and only weeks afterwards, He gave me that friend. Joan was a life-line to me in those early months and years, offering advice, words of encouragement and letting me see that the blessings far outweighed the trials for her two boys (then 15 and 17). Almost nine years have passed and Joan and I have established a deep bond. We have taken our boys to summer camp together, passed along clothing and durable medical equipment, and shared many joys and sorrows, especially as her younger son weakened and passed away three years ago.

Walking the Miles with Support: A Joni and Friends Moms Morning Out

Whether you have a child with a disability or are a foster, adoptive or single parent, a journey that is almost unbearable can actually be full of deep meaning and joy when you have the help and support of someone who truly "gets it". As human beings, we all have a deep need to connect with others. Sometimes friends and family who are genuinely loving and caring aren't able to enter into your world because they just haven't walked a mile in your shoes. For this reason, my friend Kim and I started a Joni and Friends Moms Morning Out for moms of children of any age with disabilities of any kind. We were fortunate that there was already a group meeting down in Weston, MA, so we didn't need to re-invent the wheel. (Joni and Friends is a Christian-based organization focused upon "advancing disability ministry and changing the church and communities around the world.") 

Our group meets every other month on a Thursday morning in Bedford, NH. Kim and I provide a home-made brunch (including gluten free options for those with dietary restrictions) and caregivers (most of whom are trained to handle children with disabilities) for those who homeschool or have pre-school children. We typically have 12 - 20 ladies (and 8 - 16 children) at any one meeting.

We always seem to have at least one newcomer so we typically spend the first hour relaxing in Kim's beautiful living room, eating a delicious brunch and going around the room sharing our stories. There are many smiles and laughs and often tears as well, so we are sure to have plenty of tissues on hand! At some meetings we have a special speaker and at other times we watch a Joni and Friends video on a relevant topic like autism or family retreat. Ours is a faith-based group so we typically end with a time of prayer. The idea is always to have ladies make connections with one another so they are interacting and encouraging each other in between our meetings. In the past we have also had summer get-togethers where the children are invited and we even did an over-night retreat just for the moms one winter!

With Experience comes Wisdom

If you are interested in starting a support group of your own, I will leave you with a couple of words of caution. First, be sure that there is always someone facilitating the group. Speaking from experience, we women can get a bit carried away and it is important that everyone not only have an opportunity, but is encouraged to share with the group. I personally think it is VERY important that the person leading the group is someone who "gets it". I have been to parent support groups for children with muscular dystrophy where the facilitator is trained and has lots of letters after her name, but she wasn't even a parent, never mind the parent of a child with MD. It is important to have someone with credibility, not only credentials! Second, it is important that you not allow the meeting to turn into a gripe session or a competition over who has been dealt the worst hand. Everyone in the room is in a difficult situation or they wouldn't need a support group.  Rather than spending precious time griping and complaining, how much better to encourage and help one another bear up under the difficult burdens of life.

Third, if you are going to offer child care, be sure to have some faithful people signed up who are up to the task. And please be sure that the children are far enough away in a separate area with plenty of fun things to occupy them and snacks of their own so that the parents are freely able to share what's on their hearts. I have also been to support group meetings where children are running around screaming and laughing while parents are trying to discuss difficult issues. This time should be an oasis in the middle of the desert of an otherwise stressful week for parents and children alike!

Lastly, if you are attending a support group meeting, go with the intention of giving as well as getting support. Make a point of reaching out to at least one other person and find out how you can support them in an on-going way. God will bless you in return.

For more information about Joni and Friends visit their website or call 617-723-1750.

Lori Safford may also be contacted for more information by calling 603-275-0924.

According to the Children's Bureau Strengthening Families Resource Packet of 2009, "Parents with an emotionally supportive network of friends and family often find that it is easier to care for their children and themselves" (p. 31). A parent support group is a great way to meet people and know that you are not alone. The Child Welfare Information Gateway states that "Parent support groups provide informal mutual support and opportunities to discuss parenting challenges and strategies."

Kay Sidway, Program Director of The Children's Place and Parent Education Center (The Children's Place) says that one of the first questions to ask is, what do you want to have happen in the group? For some groups, it is easier to have an informal setting where a group of people meet once a week and talk about their week, concerns about their children, etc. For others, the goal is to create a more formal support group.

Creating your own parent support group is feasible. Kay gave some pointers for establishing a parent group. The first step of creating a parent support group is to find parents locally within neighborhoods, pediatrician offices and hospitals where parents can connect with other parents who possess the same interests.  Kay also added that colleges, local schools, and libraries are great community resources to meet and recruit potential parent members. 

The next step is to establish what the group's needs are and what resources are available to meet those needs.   Next ask:  What is the plan? Is this going to be an informal or a formal group? Whatever the kind of group it is, the needs of everyone must be talked about. Next, find speakers who specialize on group's areas of need, and who can offer pertinent information and suggestions through trainings or participatory open-discussions with the parents in the group. Kay added that "All activities that have been done [at The Children's Place], were requested and needed".  Some examples of areas of need may include social isolation, family support, validation, and parenting issues.

Informal support group.  These groups often evolve as offshoots of other groups such as a birthing class or a support group your child has aged out of. It is very easy to transition from one to the other. Asking around your neighborhood, at church or making friendships at a neighborhood park can be a way to develop connections for an informal support group.

Coordinate the initial day, time and location. It's likely the group will evolve and change over time as parents schedules change, as new parents join the group, as families grow. Rotating homes, neighborhood parks...

There are an endless number of things to talk about. This can evolve, too, from the informal chat about everyone's week, joys and issues you may be having at home or with your child, to the more formal parenting tips, parenting strategies, and concrete resources in the community. You may want to find a community leader who can come talk with your group about what is available to them.

For example, if you know everyone in your support group is Christian, bring in someone from the church ministry to talk about faith-based activities for families. If you are a support group with no religious affiliation or you would rather have a different speaker, contact local organizations with parenting classes and resources to come in and speak what they offer. One part of the informal support group that could be a nice addition would be a space and time for parents to vent and relax.

Formal support group. This will probably take more time and effort, but it still is feasible for those who want to get involved. Kay gave us some wonderful advice on how to start a formal support group. Contact an agency that supports parents and talk with a leader or representative about how to get started.

Kay stated that one of the first steps in forming a parent support group is to find others who are interested in one as well. Then, find out what the needs are of the people who have come forward. What do you want to have happen? Another aspect of a formal support group is getting the word out. Networking with the community is also a great way to involve people with expertise on the needs of the people in your group. Community leaders from faith groups, the legislature, the school system, pediatricians offices and non-profit agencies have a breadth of knowledge on supporting families and communities.

NHCT Intern Liani with Kay Sidway

Kay pointed out that a parent support group should not take the form of a pyramid hierarchy. Parent support groups should work together and support each other rather than have people higher up and lower based on their title in the group. According to Kay, another important part of a formal support groups is the business side. If you find that your support group is leaning towards the formal kind of support group, find a business-savvy person. Kay ended the interview reminding us that "The Children's Place is a Parent-run organization: all of the families participating in center-based activities have ownership and investment in TCP which has made a difference in both their personal and families' lives."

Regardless of the type of parental support groups, both informal and formal support groups can help parents feel that they are not alone.

Resources available:

Parent Support Groups: Child Welfare Information Gateway   

Models of Parent Action Groups:  National Families in Action 

Starting a Parent Support group for Special Needs Children   

Parent support group tips from family-friendly.com