Child by Child

Supporting Children with Learning Differences and Their Families

Susan Richardson

• Publisher: Morehouse Publishing
• Year: 2011
• Print ISBN: 9780819227515
• eBook ISBN: 9780819227522
• Topic: Theology & Religion
• Subtopic: Religion

A how-to guide to integrate children and youth with special needs into church programs and activities, including worship. Integrating children and teens with learning differences into church programs is a growing priority for nearly all congregations, large and small, yet many feel ill-equipped to "manage" those with special needs in their classrooms, programs and worship. This guidebook for churches is designed to help integrate children and teens with learning differences and their families into the fabric of everyday church life. A useable on-the-ground resource for church leaders with specific suggestions, samples, and processes for adapting curricula, training volunteers, and supporting parents and caregivers, this guide is grounded in theological principles for the inclusion of people with disabilities in the life of a congregation. Begins by focusing on human relationships instead of programs. Expanding the church's awareness and understanding of inclusion is done with respect and achieved by extending the gospel of welcome to all. An extensive annotated bibliography of support materials included. Includes how to train volunteers and staff for hands-on work with children and youth who have special needs. Provides a theological grounding for the inclusion of people with learning differences and disabilities in the life of a congregation.

1

Begin: With People

In recent decades, there has been an important paradigm change in caring for people with differences and disabilities that, as a church, we need to be part of—and, ideally, leading. Since the 1970s, there has been a shift away from a “rules and regulations” approach to diagnosing and treating someone’s condition to a person-centered approach, which takes the human being as a point of departure and then asks about that person’s abilities as well as disabilities, strengths as well as challenges. This people-centered approach looks at how that person can best fit into a network or community of care, which, though involving professionals, uses people from across that person’s daily life to form a unique web around him or her.

The shift from an institutional to an individual lens also brought to the fore the difference between seeing a disability as inherent in the person himself, and the disability as occurring where he interfaces with his context. A difference may, in itself, be an impairment or an atypical development that only becomes a “disability” when someone’s environment doesn’t match her ability or when we ourselves give it that judgment. (See Chapter 8 on the theology of difference and disability.)

While an institutional approach begins with “You don’t fit,” the relationship approach begins with “We can figure this out.” Increasingly, faith communities that have embodied this shift focus first on relationships with children and the creation of a person-centered network around them and their families, and only then on programs. In these communities, programs, whether large or small, emerge from the cultivation of relationships with real people in real churches.

The “figure-out” approach is especially helpful when leadership is starting from scratch and does not yet have many resources in place. It allows for process, mistakes, change, and simply getting started when we otherwise might feel overwhelmed. Most important, it allows for a working environment in which judgmentalism— about either individuals or our own efforts at learning how to support them—is suspended.

A person-centered, relationship-building approach happens on several levels, all of which take time, patience—and lots of good humor:

Welcome!

• When new parents come in with a child, have teachers ask routinely, in a matter-of-fact way, what the child’s areas of challenge and strength are or if s/he has a learning difference that the parent knows of. Share the information with the appropriate staff and clergy supervisor.
• Ask all parents, regardless of whether their children seem to have a learning difference, to fill out a form that includes a space for special concerns, areas of strength and challenge, and whether they’d like to talk confidentially with staff or clergy. [See Bibliography, CLC Network (G.L.U.E.), p. 96 for sample.]
• In the welcome material for all parents, include a specific paragraph, such as “We believe that every child is uniquely loved by God. We welcome children and teens with different learning styles and abilities, and are committed to integrating them and their families into our church programs. To help us, please include information about your child’s needs in the written registration form and in conversation with his or her teacher and with clergy.”
• Begin with the child’s strengths and areas of comfort. So many systems ask parents to begin with their child or teen’s deficits; faith communities need to view every child first in terms of his gifts.
• When meeting any child, but especially one with a clear difference, use person-centered language. Ask their name first, then ask them or their parents about themselves, such as: “Tell me about what he likes,” or “Tell me about her concerns or sensitivities, or things we should avoid,” being careful to use the child’s name (“Tell me what John finds upsetting/helpful in the classroom,” or “What does Maria like to show she can do?”). Remember that other children will most likely copy the language that you model for them.
• Ask how you can best support their child. Listen carefully—parents know their kids best—for what they say is appropriate or works well, and what are the more volatile, unpredictable areas, such as mood swings; what the child tends to react to; or the child’s usual social style.
• Have images in the classroom that suggest inclusivity, such as photos and drawings that include children with Down syndrome or visual or hearing aids; physical accessibility assists also promote inclusiveness.

Examples of additional questions to ask parents:

• What are ways your child would enjoy being involved in parish life?
• What have her church experiences been like in the past? Did she have fears or hopes in coming to this congregation?
• Describe your child’s faith. How does he think about God? How does his faith grow best?
• What are your own hopes for your child in this faith community? What would help make coming to the church—at any time of the week—something she looks forward to?
• How can we help and support you, as a parent?

For further suggestions, see Newman, Helping Kids Include Kids with Disabilities, p. 20.

Go Deeper with Parents

• Help parents understand that you seek to create a partnership with them; help them experience their relationship with you in that way.
• As parents talk to you about their child, emphasize that you will honor their confidentiality and ask permission to share information. Invite them to say only what they are comfortable sharing. (See sidebar for further suggested questions.)
• If they’d like to share more about their child, ask what they’ve learned through their school experiences, including through professional evaluations, assessments, or Individualized Education Programs (IEPs). For instance, what works well for this child (classroom pacing, environment, etc.)? Offer, but don’t push, for them to share a written assessment for confidential use by the staff.
• Ask whether (and how) the child and parents want the child’s difference talked about by other staff, parents, and children. How does the child or teen understand his own diagnosis? Where is the family in terms of wanting it to be known? Responses can vary widely, from a strong preference that it not be mentioned at all to relief that you would support them in helping share the information and educate others in the faith community.
• When you refer to the child or teen, use “people-first” language, such as: “Jim has an intellectual disability (diagnosis),” not “Jim is mentally retarded.” Or “Sarah has Down syndrome (or a diagnosis of Down syndrome),” not “Sarah is Down’s.” Or “Pablo communicates with his eyes (or device, etc.),” not “Pablo is nonverbal.”
• Invite parents to meet with clergy or staff to share their concerns. Ask for a separate time and space for the meeting (“Sunday mornings are crazy for me, so let’s set up a time when I can really listen to you”), and let that reflect to the parents the importance you place on them and the meeting.
• Emphasize regular attendance to parents. Regular participation in church programs for all children and teens significantly affects their ability to establish trusting, reliable relationships with caregivers, teachers, clergy, and peers. Being there infrequently makes it harder for kids, especially those with learning differences or disabilities, to adjust and form relationships. At the same time, be aware that even people who seem to come infrequently may still consider you to be “their church” as much as those who attend more often. Even if you feel you don’t have a track record with each other, they may still come forward with a need or expectation.
• The younger the age at which kids are introduced into a program, the more thoroughly they get to know the setting, peers, and teachers, and the better others can get to know them. Again, relationship really only happens through face-time.
• Don’t forget that giftedness or acceleration is also a learning difference and can exist alongside another difference in the same child. Sometimes children or teens who are gifted need even more special attention than others, so include that in the range of needs and differences you ask parents about. Inclusion of giftedness as an issue also helps level the playing field to avoid the idea of problems and instead focuses on differences, which we all have.
• Develop a support group for parents. How you do this depends on your context, but be careful not to think of it as just for parents of kids with more extreme needs. Many parents may feel they need support for any number of things they are dealing with at the moment, yet may be reluctant to come forward. Depending on your sense of your families, such a group can begin like a general faith and parenting series. You can begin with a topic that is specific to kids with learning differences, or alternatively, a topic that has broader applicability and can serve as an umbrella under which learning differences can fall. For instance, a series on being your child’s advocate—an experience virtually all parents share—can begin with what parents have in common, developing deeper relationships and community support for particular needs within that topic.
• Be aware that parents of kids with learning differences have most likely already experienced rejection, possibly from churches, as well as suspicion, blame, and pain at seeing their child feel rejected or excluded. Be open to their stories and remain non-defensive. Say something like, “That sounds so painful; I hope it will be very different for you here. How can we work together to make that happen?”
• Allowing for humor about the child or the difference is fine—it’s a normal and healthy way that families deal with challenges. Just be sure to follow the parent’s lead.

Make a Plan

• For parents who have begun to partner with you around their child’s strengths and challenges, work with them to establish a plan for the child and the family in your specific parish—often called a Religious Inclusion Plan or Christian Formation Plan. Have as your goal the inclusion of the child in a way that is meaningful to her and supportive of her parents as their needs change over time.
• Depending on the parents’ willingness, the planning team should ideally include clergy and staff leaders who will be working with the child, and any adult helper who may work with the child.
• Published materials that provide helpful templates for the steps of creating a Christian Formation Plan include the G.L.U.E. manual (CLC Network); Newman, Helping Kids Include Kids with Disabilities, p. 21; Carter, pp. 100–101.
• Whether using a published guide or creating your own, consider these questions:
  • What is the child’s learning style? What ways does he learn best, what ways create barriers for him, what areas are still unclear and in the process of being understood by the family and other professionals? What classroom strategies work best for this child? What strategies are ineffective?
  • Does the child need any physical assists?
  • In what ways is the child most likely to participate in the faith community—either on Sunday mornings or at other church events—at this stage in her life? Be explicit about the fact that those ways will most likely change over time, and the team needs to look for things that may be more satisfying for her in the future.
  • What is most important for the child in terms of experiencing a loving God and inclusion in God’s household? How can those ideas be communicated through activities in the congregation?
  • Who are possible faith partners? Other church members who may not be teachers or supervisors may be helpful in other ways, such as sitting with the child during a service, reading to him during an event, or simply being on hand if the parent needs to tend to another child or go to the restroom.
  • In what ways do the parents need help or support? Referrals in the community, a parent group at the church, or particular parents to talk to who have children with similar issues can be helpful.
  • How can clergy work with parents to write their family’s “history”—the stories around the child or children and what they wish for their next steps?
• Write it up: The final result can be written in a brief document with bullet points or areas for short-term steps and long-term goals in education, worship, justice work, and events. Give copies to the parents and other team members, and keep a copy in a confidential pastoral file. Have staff and clergy stay in dialogue with parents about how the plan seems to be going, and remain open and flexible to adapting it when something doesn’t seem to work. Remember—anything you try is simply a great chance to learn! Reconvene the team to update the plan as parents and teachers see the need.
• Remember that most important is the deepened relationship of trust and collaboration that the planning process encourages among the parents and staff.

But We Don’t Have Anyone with Learning Differences Here!

Statistics suggest that a learning difference or disability, whether in the nuclear or extended family, impacts one in four families. The fact that it may not have been visible in your congregation may mean that church leadership hasn’t yet named the issue in an ongoing way and in an atmosphere of openness, nonjudgmentalism, and flexibility. By cultivating a culture of acceptance, you may find more people coming forward with their stories and need for support. Indeed, some congregations cite inclusive education and worship as a key reason for church growth, both numerical and spiritual.

2

Embody: Atmosphere and Vision

I recently held a Sunday forum for parents, asking them the question, “When have you, or your child, felt excluded or unwelcome somewhere? What made a difference one way or the other?” I fully expected the answers to be about churches, including our own, or schools, or other institutions, and I was hoping to pick their brains for ways to get better at helping parents feel a connection. But as usual, things didn’t go as I expected.

The number one situation in which children have felt excluded? Birthday parties. So instead of trying to steer the discussion back to my own self-interests of how to train Sunday School teachers or put out better PR materials, I just listened. And I think I still found the answers I was looking for, only not in terms of church logistics. The answer lay more in the atmosphere and real intentions of those who do the welcoming, whether it’s a birthday party, a theme park, or a church.

Hospitality—in the deepest sense of a welcome that is challenging to the host, doesn’t edit the guest, but does change the church—is a high priority in the church these days. Writers and speakers challenge us to look within ourselves and our congregations to question how deep welcoming the stranger truly goes, how much it means giving up control instead of commandeering it, and how well we understand welcome as not being about coffee hour. For example, the Reverend Stephanie Spellers, in her book Radical Welcome: Embracing God, the Other, and the Spirit of Transformation (Church Publishing, 2006), brings together the theological and practical questions of who is being excluded within a congregation, even inadvertently—whom don’t you see—and what the reasons for that might be. She offers a process that can guide a congregation through those questions in the real context—not an imagined one—in which they find themselves.

When you ask the question of whom you may be excluding in your own faith community, where in your answer are families with kids with learning differences? Are those families and children present, supported, and feel their differences can be named without setting them apart? Or are you like one priest I spoke to who said, “We have a Down’s kid, but we don’t have anybody with learning differences”? (And he wasn’t being theological.)

To recall the statistics on families with a child with a learning difference—around one in four families affected either in the nuclear or the extended family—it’s most likely that the people are present but do not yet feel comfortable bringing that part of their stories—of their challenges, grief, successes, and joys—explicitly into the congregation’s life. How can we change that?

While the support of Sunday School teachers and clergy is important, it’s not enough. Whether or not members are aware of it, a congregation inevitably embodies and projects a certain orientation or atmosphere. But awareness and intentionality around what atmosphere you want to create makes all the difference in what that atmosphere is like. If you’re not intentional about what you do want to say, you may end up accidentally saying things you don’t intend.

Do parents sense a space of fear, discomfort, lack of information, and even implicit judgmentalism? Or is what they encounter one of flexibility, relationship, openness to learning, and the chance to see all of us as having both abilities and inabilities?

Reflecting on Your Congregation’s Culture

• What’s the real on-the-ground atmosphere right now on inclusion in general? Is it a selective or passive inclusivity, or is it active, self-examining, and intentional? Does it challenge the congregation on a weekly basis in the way they go about all the ministries of the church? What’s the approach in each of the...

Table of contents

• Cover
• Half Title Page
• Advanced Praise
• Title Page
• Copyright
• Dedication
• Contents
• Acknowledgment
• Introduction
• 1. Begin: With People
• 2. Embody: Atmosphere and Vision
• 3. Teach: Curricula
• 4. Understand: A Guide to Learning Differences
• 5. Support: The Staff Who Know the Kids
• 6. Pray: The Community in Worship
• 7. Lead: The Clergy
• 8. Believe: The Theology of Difference and Disability
• Selective Bibliography
• Index