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| Greetings in Christ!
Many of our newsletter issues have focused on the individual who has a disability. Individuals, however, usually live as part of families. The lives of these families may be very different than the lives of families not impacted by disability. Faith communities can and should excel at providing concrete support to families that include a member with a disability. We are grateful for three United Methodists who provided guest articles for this issue, which aims to give you resources for offering such support.
The Sibling Leadership Network, directed by Katie Arnold of Chicago, contributed an article on reaching out to children and adults who have siblings with a disability. Cathy Smith of York, PA, shared insights on what it is like to grow up with a parent who has a significant disability, and how churches can support children like her. Lorna Bradley, a deacon in the Texas Conference who lives in the Houston area, wrote two helpful articles on how churches can better understand and reach out to parents of children with disabilities. You can put Lorna's book Special Needs Parenting: From Coping to Thriving (reviewed below) to immediate use to launch a faith-based parent support group hosted by your church.
May you be blessed and inspired by the ideas in these articles! Lynn Swedberg, Editor |
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Supporting Siblings of People with Disabilities
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Across the lifespan, siblings of people with disabilities play a key role in the lives of their brothers and sisters. Not only might they be caregivers, but also they can become advocates for the broader disability community. As siblings of people with disabilities go through life's journey, they may find themselves in need of someone to turn to for their own support and guidance. For siblings who want to reach out to others whose experiences are similar, there are a wealth of resources available. Churches can help siblings learn about such resources.
It is important for siblings to know they are never alone. They can join the
Sibling Leadership Network (SLN), an organization that provides siblings of individuals with disabilities the
 information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families. Siblings around the globe can join the SLN for free, enabling them to be effective advocates while having a strong community behind them. The SLN, led by a board of accomplished sibling advocates from around the United States and the world, consists of committees that provide information on policy, advocacy, research, and support for siblings. With chapters in 21 US states, the SLN's network of leaders is continually growing.
Another resource available to siblings of people with disabilities is the
Sibling Support Project
, which connects thousands of brothers and sisters from around the world. Directed by Don Meyer, the Sibling Support Project is home to initiatives including SibTeen, Sib20, and SibNet, as well as Sibshops. SibTeen (for teenagers), Sib20 (for twenty-somethings), and SibNet (for adults) are online communities that provide a safe space for siblings of people with disabilities to communicate and share experiences. Each is a closed Facebook group that siblings can request to join, and anything shared in the group remains private. These groups serve as a front-line resource for sibs, by sibs!
School-age siblings of people with disabilities can connect with siblings in person through
Sibshops events, which provide an atmosphere where siblings come together to have fun, laugh, talk about the good and not-so-good parts of having a sibling with a disability, play some great games, learn something about the services their brothers and sister receive, and have some more fun. There are currently over 400 Sibshops in almost every state and in countries ranging from Argentina to Iceland and Ireland! Sibshops are run by family members and service providers and can be sponsored by a wide range of groups and agencies, from school districts to hospitals to churches.
By connecting with sibling groups and organizations, siblings of individuals with disabilities can become leaders who can help empower and support their brothers and sisters to grow and thrive in their communities. Siblings can have a powerful, positive impact on the experiences of their brothers and sisters, and are uniquely positioned to partner with organizations, community and religious leaders, and government officials to effect positive change for all people with disabilities.
Submitted by the Sibling Leadership Network's Communications Committee.
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Friends Who Can Be Trusted
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Anyone growing up in a family where someone has a long-term illness needs friends who aren't afraid to reach out and pray with them.
My mother was in a wheelchair with Multiple Sclerosis after I was born. Agency caregivers came, but were unreliable. That's when my family's church stepped in and sent over volunteers to help while my father worked. The helpers got Mom to the bathroom and prepared dinner.
After I came home from school, I took over. I loved Mom, but she could be hard to live with. She needed help with the simplest task. I admit that sometimes I ignored
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Author as a child with her parents |
her, or called out that I was busy. She patiently waited while I did homework, practiced piano or sewed. No, sometimes she wasn't patient. She asked again. And then I felt guilty.
Having a friend who prayed for me would have made a difference. I needed patience and I found myself in awkward situations at school and in the community. Although I had friends, I didn't have a friend at church who knew me very well. I needed a friend who I could trust.
Growing up with family members with disabilities or chronic illness creates special needs for the people in good health, too. A daughter needs at least one friend she can confide in and know that embarrassing questions won't be asked in public. Someone she can tell that today is not a good day to come over. A son needs someone to turn to when worrying about his own future. Someone he can trust and pray with.
Although the church prayed for Mom, I don't think they prayed for me or my father. Yes, prayers for healing can lead to tears of disappointment. Why are some people healed and not others? God is always there. Isn't he? I stopped praying for Mom when I was eight years old because she never walked.
Maybe if I had a friend to pray with, I would have continued. Through good times and bad, the friend would be there giving comfort and suggesting, "Let's pray together, OK? Any special prayer requests today?" The friend wouldn't stop asking after hearing "No" once or twice, but would sensitively continue to suggest praying together.
Youth group leaders can say all the right words; a peer knows exactly how feeling different and stressed out can be torture. Peers can be the lifeline that keeps life in perspective. Just sharing how they also experience anxiety, even though circumstances are different, can help the teen caregiver feel better, feel normal. Complaining and crying are allowed! Leaders and peers can pray with her or him, then give a backrub or a hug before she returns home.
Looking back, I had a happy childhood, but it could have been happier if I had a prayer life. As an adult, I regained my trust in God. First in small things, then larger. Lastly, I began to pray for sick people and their families.
Contributed by Cathy Smith of York, PA, who works as a greenhouse assistant for Able-Services where she helps people with intellectual disabilities enjoy gardening.
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Support Groups as Pastoral Care
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Support groups create a valuable resource of pastoral care for parents raising children with special needs. Parenting a child with physical, intellectual or behavioral differences is a unique journey with unique challenges in parenting. Parents often become isolated, even as they need support and understanding. Parent support groups offered within a congregation create a place for parents to feel heard and accepted, as well as providing an opportunity for parents to share ideas and learn from each other. Creating a support group is easy with a few key components in place:
1. The key to a successful group is a leader with good organizational and people skills. While starting some ministries may seem overwhelming due to the number of volunteers needed, a support group simply needs one strong leader. A good group leader creates a welcoming environment, organizes speakers and activities, and maintains contact with group members.
2. Choose a place and time to meet. Groups that meet during the Sunday school hour tend to get couples as well as single parents because there is a place for their children during the Sunday school hour. Weeknight groups can be another good option, but may conflict with
 bedtime. Weekday groups attract stay-at-home parents, but exclude those who have careers. This is still a viable option during the school year in a congregation not equipped to provide child care. Groups that meet weekly or semi-monthly are often more cohesive than those meeting monthly.
3. Talk to parents and get their feedback during the planning phase. Find out what they would like to include in their support group. Options include book studies related to special needs, guest speakers on topics such as estate planning, navigating the school system, and marriage enrichment, to name a few. Include occasional social events like play dates or a night out with friends. The most successful groups create a schedule ahead of time that incorporates a variety of activities for connecting, learning and socializing.
4. Invite, invite, invite! Use the church newsletter and announcements to reach people within the congregation. Social media is a great way to reach those outside of the congregation, as well as leaving flyers in therapist's office or connecting with local non-profits that provide services to families with special needs. Of course the best way to grow a group is by personal invitation. Continue inviting new people after the group is established.
5. Keep connected through social media and email. The nature of raising children with special needs makes for sporadic attendance for some due to health and behavioral issues. Sending regular emails with prayer concerns and creating a closed group on social media facilitate connection among group members.
With the emotional and spiritual support offered through a group setting, parents of children with special needs know that they are not alone.
Contributed by Rev. Lorna Bradley, D. Min. - Fellow in Developmental Disabilities and the Family at Hope and Healing Center & Institute, Houston Texas.
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Five Things Families with Special-Needs Children Wish Congregations Knew
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While the special needs world can feel isolating, many times there are people in our lives who want to reach out in a meaningful way but are unsure how to proceed. At times concerns about causing offense or being intrusive create barriers to understanding. Bridging the communication gap with special needs families can open the door to many avenues of support within a congregation. These can make a big difference in improving family and personal resilience, keeping families functioning well. Here are a few suggestions that may help improve understanding of the world of a special needs parent:
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We can use help from time to time, but may feel uncomfortable asking for it. It doesn't have to be something big. If a family has a child with fragile health or impaired mobility, having a list of folks to call on can be a life saver. Matching a family with a congregational care partner offers a valuable resource.
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We need friends. Special needs parenting can be isolating due to differences. We appreciate it when people make the effort to reach out. It is hard for us to do so because we often receive rejection. We may need extra encouragement to get involved in the life of the congregation. We want connection, but we worry, "Do they want us?"
3.
We like to be included. At times our families have a hard time being part of activities due to physical, intellectual or behavioral differences. We may be hesitant to try new things. It's nice to be invited and then welcomed if we feel brave enough to try something new. We may need extra help navigating our way through activities. Sometimes don't have a clue how to make it work. We don't expect the congregation to have perfect solutions either. Rather, we appreciate it when congregations try right along beside us.
4.
We need to talk. An important part of coping well with stress is being able to share
 with others. It helps process feelings. It is validating to be heard. Pastoral care, whether one on one or through a support group, makes a big difference in the how well our families function.
5.
We don't mind answering questions. A great way to build bridges is simply to understand the differences with which we live. Approach the discussion from a positive perspective
rather than, "What's wrong with...?" Perhaps try, "Since your son is non-verbal, please teach me how to communicate with him. I want to understand what he needs," or "We want to include your daughter in choir and I understand she sometimes has seizures. Can you teach me what to do if that happens while she is with the group?"
Open communication and gracious invitations go a long way toward making families raising children with special needs feel welcome and included in the life of the congregation.
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Special Needs Parenting: From Coping to Thriving
A Resource for Parents and Small Groups
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Parenting a child with special needs can be a lonely journey, so finding support is crucial for self-care and resilience. Rev. Dr. Lorna Bradley, an ordained deacon in the United Methodist Church and parent of an adult son on the autism spectrum, saw a need for emotional and spiritual support of parents raising children with special needs. She wrote Special Needs Parenting: From Coping to Thriving to equip parents with tools to cope with common challenges, helping them build personal and family resilience. This book includes discussion questions in each chapter and is suitable for small groups or individual readers.
"Something special happens in a small group with others who understand the journey. When you're parenting a child with special needs, even if you're in the room with other parents of neuro-typical children, you can feel incredibly isolated. The things they talk about are different. Their struggles and victories are so different from ours. When you're part of a small group with other parents of children with special needs, even if the diagnoses are different, you find mutual understanding," said Bradley, a Fellow at the Hope and Healing Institute in Houston, Texas.
 Special Needs Parenting is a book written specifically for parents like herself who are raising children with special needs. It gives parents the tools to help them cope with the spiritual and emotional challenges that come with parenting a child with special needs. Bradley strongly encourages parents of special needs children to take the time to equip themselves to better handle the stresses that come their way.
"How we fuel ourselves when things go well helps prepare us for when things aren't going well. Take care of yourself the best you can-your emotional, physical and spiritual health, so that when you are parenting kids with special needs you are the most resilient person you can be."
Special Needs Parenting is on Bishop Janice Riggle Huie's list of recommended reading for 2015 and is available through Cokesbury.com and other book sellers in both paperback and ebook versions.
Submitted by Naomi Krueger, Freelance Writer, Minneapolis, MN.
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Upcoming Events
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July 19, 2016 2:00 Eastern Time On-line Webinar
Emergency Response Training Options for Houses of Worship (FEMA)
July 21-14, 2016 St. Paul, MN
United Methodist Congress of the Deaf National Gathering
Joint event with Episcopal and Lutheran national Deaf organizations. Check the
UMCD website for more information and registration forms.
July 24, 2016 9:30-1:00 Centennial UMC, Roseville, MN
Inclusive Worship, Lunch, & Learning
Worship, hear a panel, learn about music programs or how to do a church accessibility audit from members of the DisAbiliity Ministries Committee of the UMC. Lunch is by donation.
RSVP to Debby Newman.
September 13, 2016 9:00-3:00 Calvin College, Grand Rapids, MI
Universal Design for Worship
September 28, 2016 Addison, IL Celebrating Hope: Promoting Mental Wellness and Resiliency
Pathways to Promise conference, with keynoters Craig Rennebohm and Nanette Larson. Event is followed by a 2 day Consultancy Training Institute for those wanting to establish mental health ministries or program development. See
more information
at
Pathways
.
October 28-30 Niagara Falls, Ontario, Canada
Life to the Full: Ability. Belonging. Community
Three day conference with many nationally-known speakers who will motivate, encourage and equip you, sponsored by the CRC and RCA Disability Ministries and other partners. For more information and to register, check the website.
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We hope that you are now motivated and ready to begin planning the next phase of your ministry and outreach. As you work with individuals and families, please remember that the language we use does make a difference. While it is very common for churches to use the term "special needs," and while many families search for services using "special needs" as a search term, not everyone embraces the term. Very few adults with disabilities refer to themselves as having special needs.
If you wish to explore this concept further, a good starting place is Kathie Snow's article
The Case Against Special Needs. Kathie's website,
Disability is Natural, offers helpful tools and perspective in the journey toward use of inclusive language and thinking.
Peace,
DisAbility Ministries Committee of The United Methodist Church
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