Using Teens as Special Needs Buddies
Some of you may recognize the below post which originally ran in the July 2010 monthly newsletter of The International Network of Children’s Ministry. The article is no longer easily accessible on the INCM website and after seeing how popular last week’s Teen Helper Training outline was I thought I’d re-post the below article here. Briarwood Presbyterian Church’s Special Connections Ministry does a fantastic job of both equipping teen servants and using the special needs ministry as a means for spiritually developing those youth helpers. ~ Amy
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Joel Wallace, Director of Briarwood Presbyterian Church’s (Birmingham, AL) “Special Connections” Special Needs Ministry recently sat down with me to share how his church has created a tremendously successful buddy program. “Two years ago the parents of our participating children with special needs shared their desire to expand our program beyond a single self-contained classroom. Many parents felt their children were capable of taking part in the typical classrooms and they wanted them to experience more inside the general children’s ministry. I began thinking about how we could accomplish this and my mind kept coming back to using our youth.” Wallace and his wife Holly had been active in Briarwood for years. Their connections across the congregation were strong and as a result they had relationships with a handful of teenagers and their families inside the church. One particular teen was Brittany White. Wallace continues, “Holly and I knew that Brittany had a heart for children with special needs as she had worked as a special needs volunteer inside our church’s summer camp. In addition, we saw that Brittany possessed leadership ability and maturity that could make her a strategic part of our special needs program.”
In the meantime, Wallace laid the foundation for hatching his idea of launching a teen staffed special needs buddy system by gaining mindshare of Briarwood’s youth ministry team. Shortly after a conversation with Briarwood’s youth minister, Wallace and his wife approached White with the idea of developing and coordinating the teen buddy program for the special needs children’s ministry. White quickly agreed to serve in such as role and shares “Several years ago I served on a mission trip where I worked alongside a child with autism who also had a cleft pallet. I felt especially drawn to that child, as I sensed his heart was so pure. From that experience I developed the passion to help children with special needs. So when Mr. Wallace asked me to help start a buddy program for Special Connections, it was an easy decision to say ‘yes’.” Brittany is now a senior at Briarwood Christian High School (Birmingham, AL) and headed for Auburn University this fall where she hopes to serve again in a church’s special needs ministry. (Auburn/Opelika, Alabama readers, take note!)
I have observed the Special Connections buddy system in action and indeed it is one of the best programs I have run across. The enthusiasm and appreciation of Brairwood’s parents for the program is phenomenal (I was fortunate enough to see this!). Many of the pointers below are drawn from Briarwood’s Special Connections buddy system framework.
Set up a formal application process
By developing an application process involving references and interviews for each prospective teen servant, the message is conveyed that participating in the teen buddy program is both an honor and a commitment. Requiring applicants to write an essay about their own spiritual journey or the desire to work with children with special needs may deter not-so-serious candidates from applying. In the meantime, by setting up some application parameters, the message is conveyed to the teens that their service is both valued and important. Briarwood buddies know that they can list their service in the Special Connections ministry on future job and college admissions applications.
Identify and invite potential candidates
The culture of the program can be established by conferring with the youth minister and hand selecting some highly respected teens from the church. Similarly minded youth (especially younger ones who may look up to the teens who were already recruited) will likely follow suit with a desire to serve.
Set reasonable expectations and create a rotation
Provide each teen helper a job description and consider providing and requiring a commitment pledge, acknowledging the defined duties and period of service. Briarwood creates a four member team of teens and each team is assigned to a specific child with special needs. One of the four team members serves in a “lead” position, which requires them to coordinate and confirm the weekly service schedule for the teammates. The four teens rotate, helping one Sunday each per month with the same child.
Create program policies with teen service in mind
Policies and procedures for children’s ministry and/or special needs programming should be more detailed and straight forward when teens are involved. For example, policies regarding cell phone use, texting and especially picture taking are needed for this generation of camera using, social networking young adults. And teens may often not realize the serious consequences for “horse play” and how inappropriate and/or dangerous picking up children, putting them on their backs, etc may be. In addition, issues pertaining to privacy should be spelled out so that all buddies are aware of restrictions on what they may disclose to others about what they know about their assigned child (diagnosis, family issues, etc). All servants should be aware that a breach of confidentiality and the disrespect to a family’s privacy is grounds for dismissal from buddy service.
Behavior management issues related to children should be anticipated with clear instruction for what teens are expected to handle and not handle. Briarwood’s Special Connections program has a well-thought out process that removes teens from responsibility for addressing complex behavior challenges. Teens understand that they may need to guide a child in order to prevent problematic behavior and even occasionally redirect. However they are not to function in an authoritative role with their paired child. Teens are instructed to notify a designated and trained adult to handle any growing difficulties. Adults prepared to deal with behavior issues are often in the typical environments, however the special needs focused staff are always available in the Special Connections home base room. It is not uncommon for a child having a rough day to be escorted back by their buddy from a typical environment to the special connections room. Either way, the buddy remains with the child but hands off the responsibility of handling behavior challenges to the designated adults.
Communications between teen buddies and parents of children with special needs should be outlined. Adults should handle all consequential interactions with the parents and never teens. Briarwood’s teen buddies are instructed to avoid any type of difficult discussion with parents whether that relates to enforcing a church policy or addressing a child’s behavior issue. Teens are to always refer program staff (adults) to parents when such conversation needs arise. Briarwood coaches their teens to only offer positive toned comments in those times they do interact with or run into the parents of their buddy or another participating child.
Similarly, teens needing coaching or any conflict issues that arise among the buddies should be handled by adult leaders. While a teen coordinator can help tremendously with the logistics of a buddy program, managerial toned conversations requiring judgment or enforcement should be tasked to adults.
Toileting and bathroom policies should be developed and communicated to both the parents and the teen buddies. Along the same lines, policies and environments should be created so that teens are never alone with their assigned child except when transitioning from one environment to another and in plain view (such as a frequently traveled and public hallway). Briarwood keeps a Special Connections home base room open during all programming. This room is always staffed with at least one adult so that a teen and their buddy are never alone without an adult nearby.
Equip teens through training
Briarwood kicks off their teen buddy program each year with a 90 minute training class. Wallace walks the teens through a well-designed education session teaching the future buddies the general program policies and helping them to understand their role to their paired child with special needs. As a part of the training, Wallace employs creative activities to help participants appreciate the world of a child with a disability. For one exercise, teens are given an adult athletic sock and instructed to place it over their writing hand. Teens are then tasked with drawing a described picture. This assignment illustrates the extra effort sometimes required to complete an otherwise easy task for an individual with special needs. Wallace utilizes other interactive exercises to demonstrate how a limitation may or may not pose an obstacle for a person with a disability. Wallace shares “the teens usually enjoy these fun activities and in the process they leave the training with a better grasp on how they can assist (and sometimes not assist) their assigned child with special needs.” ~ Amy
For more on related topics see the following posts:
Special Needs Training for Church Greeters
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Teen Helper Training
Below is a teen training outline that I wrote for a church where I had served as a Vacation Bible School lead teacher. This training was written for a children’s ministry that has a very high number of participating children and a relatively low number of adult teachers. For this church, the success and safety of the VBS week is largely dependent on the quality of service provided by teen helpers. This training can also be adapted for Sunday morning, Wednesday night, and special needs ministry buddies. .
Teens can be an asset or a liability, depending on the culture promoted and the training provided by leadership. Make the rules and the training fit the needs and approved policies of your church. To make for a shorter training session, provide some of the below pointers in writing and require prospective servants to sign a document acknowledging they agree to the following guidelines. Also, when you can, interject humor and funny role-playing into a teen training event. Teens love attention…recruit a couple of outgoing students to role play some of the scenarios suggested below. While the content is serious, you can lead a training with a light-hearted and fun approach so to generate a few laughs.
Note: Much of this can be adapted for a teen buddy training for special needs service.
Children’s Ministry Service is a Mission and a Calling
- Who is impacted by a church’s children’s ministry? Why is this environment (VBS, Sunday morning small groups, Wednesday night) important to help everyone involved experience Christ? Kids, parents, volunteers, bigger church. A teen helper can positively influence or negatively affect every person they touch in the course of service.
- Serving in kid environments isn’t for everyone (Romans 12: 4-8).
Role Play: Have fun with this, generate a laugh using a couple of silly students to act out these scenarios. Invite training participants to guess which scenario is a good reason to serve and which one is a bad reason to serve.
Example #1: place to hang out with boyfriend or gossip with best friend
Example #2: passionate about discipling children, way to use gifts of organization
Kidmin Service is a job
- The teachers you work with will be references for you as you apply for real jobs, college applications
- You will have a “boss” – your manager is your classroom lead teacher.
- You can be reassigned or as Donald Trumps says “You’re fired.” (have fun with this)
Role Play: Example #1: Classroom teacher makes a request of a teen. Teen actor demonstrates showing respect vs. disrespect. Example #2 flirting with boyfriend/girlfriend and not paying attention to children.
Job Description
Tasks teens can be expected to help with:
- Giving one-on-one help to kids during crafts and other activities
- Keeping track of kids, transitioning children between activities & settings
- Setting up for the next activity
- Keeping the room clean
- Keeping the children’s take home bags prepared
- Leading in the gross motor play and outside coordinated activities
- Giving extra attention to children with special needs
- If you are unclear what to do, ask the teachers
- Alert your class teacher to your scheduling conflicts (arriving late, leaving early, etc)
Safety
- Perception is reality. We do things to be safe and to appear safe.
- Physical handling of children (no grabbing or jerking a child who is misbehaving, touch can be good and bad).
- No horseplay or piggy-back rides
- Only teens over age 15 can pick up children ages 3 and under. For example: 14 year old teen helper can’t pick up any child; no child age 4 or older should be picked up by anyone.
- Teens should never be alone with a child except when transitioning from one environment to another and in plain view (frequently traveled and public hallway).
- Generally speaking, don’t encourage children to sit in your lap – especially male helpers!
Toileting/Diapering
- Diapers should only be changed by approved/trained females age 15 and older
- No child should ever be alone with a single teen or adult, especially in bathroom settings
- Teens/teachers may stand at edge of door in bathroom as child uses restroom. Teens should not wipe a child or help undo/redo pants unless there is 2nd person (adult) adult present and watching.
- Always have at least 2 people (one person must be adult) nearby and in view of toileting situations.
Handling Misbehaving Children
The R’s of Behavior Management:
Request a child to stop disruptive or harmful behavior. Give children the freedom to fidget; pick battles.
Redirect misbehaving children. Ask the child a question on an unrelated subject to break the focus or the conflict. Provide the child an alternate toy, ask the child to help with a task in another part of the room.
Remove obstacles. Recognize the underlying cause. If the child is tired, suggest a chillout time on a bean bag. If the child is hungry, provide him a small snack. If a certain toy is causing constant conflict, tell the toy “bye-bye” and put it out of eyesight for everyone.
Responsibility for instilling consequences or hard conversations should always be with adults. Teens should not be the ones to create “time outs” for the child. Teens are NEVER to talk to parents about behavior challenges.
Role Play: Consider giving one or two examples of common types of misbehavior and having the teens role-play how to handle it.
Snacks from Refreshment Room
- Don’t bring snacks from breakroom inside children’s classrooms
Role Play: Teens bring plates of food and drinks in room, children whine to get the adult snacks; teachers and students trip over & spill snacks on crafts.
- Coordinate your breaktimes with your teacher. Going to the volunteer refreshment room is secondary to serving.
Conflict between Teens
- For significant conflict between teens, report this to the lead adult teacher. Allow the class leader to address issues between teens.
Do’s & Don’ts
- No cell phone use
- No Pictures – No texting pics of kids, no posting pics to Facebook, etc.
- No carrying children, no piggyback rides
- Do protect the privacy of child & family
- Don’t switch your class assignment without clearing it with ministry director, the lead teacher of the class you want to leave and the lead teacher of the class you want to enter. It is not appropriate to request a change on the day of service.
- Wear your assigned shirt and nametag each day so that teachers and parents know you are an approved kidmin worker.
Check-In
- Don’t let parents leave a child with you without going through proper daily check-in.
- Always ask about allergies or special needs with every check-in.
Check-out
- Teens should never release a child to anyone at checkout. Only authorized adult teachers may release participants to parents.
- Be mindful of the importance of the classroom director’s interaction with parents. Do not interfere with conversations between the adult teachers and parents picking up their children.
- Don’t solicit babysitting jobs at check-out
Role Play: Adult director is trying to establish a relationship with an unchurched mom at checkout while a teen is interrupting trying to hand out a babysitter flyer. Show how teens can get in the way of this important connecting conversation versus how they can help.
Allergies & Medical Issues
- Define Anaphylaxis and discuss importance of allergy notifications.
- Briefly discuss recognizing and responding to a seizure.
- Do not ever administer medications to a child.
- Provide onsite contact for a medical emergency.
Transitions and Taking Children outside of Classrooms
- Transitions need to be carefully orchestrated so that ample volunteers are visually tracking each child on the journey between settings.
- Make sure all children are identified with adhesive name tags in case they are lost during transition (esp important for preschoolers)
Classroom visitors
- Don’t allow parent visitors or other visitors in room without lead teacher’s approval and direct supervision.
- Don’t visit other classrooms.
- Don’t invite your friends to visit your classroom.
Confidentiality
The following items should only be discussed with the classroom teacher and on a need-to-know basis.
- Medical issues or special needs diagnoses
- Problems in a child’s home
Abuse Prevention & Reporting
Brief mention may be required as church settings can be considered a
“mandatory reporting” entity in some cases.
- Signs of abuse
- What to do (legal requirements)
- Who to tell, who not to tell (the more people you tell, the more people that could be required to testify in court).
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Beeping Easter Eggs
Seems appropriate on this day, Valentine’s Day, that we are preparing our children’s ministry for the next holiday, Easter. Danielle Christy, former Children’s Pastor for Mount Hope Christian Center (Burlington, MA), provides today’s guest post.
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When I was in High school, one of my friends invited me to volunteer at an Easter egg hunt hosted by the Pennsylvania Association for the Blind. So that children who were visually impaired could participate in the hunt, beeping eggs were used. These sound-emitting eggs would all be turned on and placed near eggs filled with candy. Participants who were blind now had a fun way to follow their senses and experience in the delight of finding Easter eggs.
Recently I served as children’s pastor for my church in Massachusetts. Through our church’s Spectrum Ministry, we serve a number of children with various special needs. In the past one of our ministry participants had autism as an attribute and was also blind. When his family began attending our church and as I prepared for our upcoming Easter egg hunt, I remembered those wonderful beeping eggs. Our church purchased four beeping eggs to have specifically for this participant. We enlisted the help of two volunteers during the hunt to facilitate the hiding and finding of the beeping eggs. The first volunteer-buddy would walk alongside the child as he listened for eggs. The second volunteer would run ahead, find a spot to place the beeping egg (turning the sound “on” at that point), and place candy next to special egg. The eggs were positioned one at a time to make sure other children did not accidentally find what was specially designated for this child.
The egg hunt was a great success for everyone, including a child who may have never before experienced this annual Easter festivity. It was such a joy to know that every child in our church was included on that special day. ~ Danielle Christy 
For more about beeping eggs, see this link.
To order Beep Eggs for your church, send an email to beepball@qwestpioneers.org
Accommodating Kids with Allergies and Dietary Restrictions
Food allergies and special diets are becoming more common among the population of typically developing kids and kids with special needs. An easily overlooked (and easily addressed) strategy for keeping children safe at church involves preventing and responding to an anaphylaxis reaction. A couple of years ago I was serving in a Vacation Bible School class, leading a room a 25 entering kindergarteners. That week we narrowly averted an life-and-death crisis when a child’s nanny dropped him off making no mention of the child’s severe peanut allergy. While the child’s allergy had been noted in the child’s online preregistration, there was no system in place to alert or remind our rotating volunteers of the child’s allergy.
Looking back, I know we had God’s hand of protection at a particular moment when one of our VBS volunteers remembered an earlier comment from the child and happened to notice him standing in the snack line. That volunteer quickly pulled the child out of line, inquired of the ingredients to the kitchen staff, and discovered that the day’s treat was unsafe. Since that experience, I’ve become a huge fan of electronic check-in systems that generate name tags. It is imperative that relevant information from a child’s initial registration, such a dietary restrictions, is communicated to the volunteers. Issuing system-generated name tags with a symbol to indicate a dietary restriction is one of the best ways to make sure rotating volunteers are aware of a child’s allergy. I’ve also seen churches post a visible sign inside the classroom with children’s names, their picture, and information about their individual food intolerances. While there may be some privacy concerns with this approach, most families are thrilled to see a concerted and public effort made to protect their child.
Win a FREE Pass to the 2012 Orange Conference
The Orange Conference recognizes that churches want to do a better job of including kids and students with special needs. That’s why OC12 has an entire special needs ministry track. If you serve in a volunteer or paid capacity at your church and could benefit by attending the OC12 special needs ministry track, we invite you to submit an entry to win a FREE PASS to The Orange Conference. Watch the following video for more information about the special needs ministry track and the contest.
Wanna chance to win a free pass to OC12? Here are the rules:
1) The nominated candidate must serve in a church (paid or unpaid) in some capacity that ultimately helps with the inclusion of kids or students with special needs. You may nominate and write about yourself or another person who you want to win the FREE pass.
2) Send an email to amy@theinclusivechurch.com telling us in 300 words or less why receiving a free pass to OC12 would benefit your church and make a difference in the lives of families impacted by disability or learning differences.
3) Email must be received by 11:59pm on Sunday night 02/12/12. Winner will be announced by the end of day Monday, 02/13/12 via The Inclusive Church Blog’s Facebook Page & Twitter Account: @SpNeedsKidmin.
4) Verify that your church or you personally can cover all transportation, lodging, and meal expenses associated with the trip for OC12. The Orange Conference will only be providing the event pass for Wednesday – Friday 04/25/12 – 04/27/12.
2012 Orange Conference Special Needs Track
Mark your calendars for April 25th- 27th, 2012 to be at the Gwinnett Arena in Duluth, GA (outside Atlanta). Below are the workshops slated to be part of the Special Needs track for OC12. Registration for the below preconference breakouts and workshops are now open.
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HOW TO: Create a Special Needs Ministry Environment - Meaghan Wall
In this session we will walk through the details to consider as you create a safe and sensory-rich ministry environment. Ideas will be offered for every budget and so that you can make your existing environment more conducive to special needs inclusion or plan your future space from the ground up. We’ll show you how to make space accessible and inviting for students with a disability, from check-in area, to classroom, to play area, bathroom, and even outdoor playgrounds.
HOW TO: Recruit, Train and Retain Special Needs Volunteers - Linda Martin
Special needs ministries offer a unique opportunity to create a sense of community and purpose for its lay servants. You’ll leave with new ideas for finding, fulfilling and keeping volunteers called to serve in this ministry. We’ll go through a sample volunteer training outline during this session as well as walk you through the basics of making teens an integral part of your church’s volunteer team.
HOW TO: Use Technology for Special Needs - Meaghan Wall
A growing number of apps are presenting new ways to engage children with disabilities and communication disorders. We’ll give you ideas for ways you can use technology in the church setting for the purpose of including and even advancing the spiritual development of the child with special needs.
Surviving to Thriving: Techniques to Engage Different Learners - Amy Fenton Lee
The success of a child is often closely tied to the success of a volunteer. In this fast-paced session we’ll equip you with tricks and tactics for keeping the most challenging child engaged. You’ll learn easy and effective communication techniques, behavior management strategies, and activity adaptations that can make Sunday mornings, Wednesday nights and VBS environments a meaningful experience for everyone involved. Lay volunteers will be prepared to teach children with various learning differences.
Accommodating & Advancing the Spiritual Development of Kids with Autism - Linda Martin
This workshop will address how the Sunday morning experience can be specially tailored to accommodate the child or student with autism. Inclusion strategies will also be offered for typical ministry environments and self-contained settings where impacted individuals may participate. There will be special emphasis on how to modify curriculum and use music for the purpose of helping a student with autism learn a Bible lesson and concept.
Leading a Special Needs Inclusion Initiative - Amy Fenton Lee
Accommodating a child with special needs can be a game-changer for an entire church staff. With preparation and program parameters everyone can experience success. We’ll walk through the various issues a church’s leadership team may need to consider as they determine their church’s unique calling and capability for disability accommodation. We will talk about developing a job description for a special needs ministry coordinator while offering ways the church can inspire and equip lay leader champions. Best practices will be shared for instilling a sound culture for risk management and program longevity. This workshop is geared toward senior pastors and family ministry leaders.
Family Ministry, Spiritual Formation & Special Needs - Meaghan Wall
This workshop will have particular emphasis on the Orange approach to special needs inclusion. We’ll share ideas to advance the spiritual development of the child with learning differences or disabilities by encouraging and equipping parents. In addition, we’ll offer ways the ministry can facilitate learning by providing service experiences for the individual impacted by disability.
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Workshop Speakers:
Meaghan Wall is the special needs ministry coordinator for Stonebriar Church in Frisco, Texas where she has served for the past five years. Stonebriar currently welcomes 80 students with special needs, many impacted by autism. Since college Meaghan has worked in several roles that shaped her for eventual ministry at Stonebriar, such as serving on staff at a church in Lubbok, Texas and Easter Seals Colorado. Meaghan is a licensed and experienced social worker with a degree from Texas Tech University. Meaghan regularly participates in professional and ministry-related training for those serving individuals with various disabilities.
Linda Martin MME, MT-BC is a board certified music therapist with a Masters degree in music therapy. Monday through Friday Linda writes music curriculum for and provides music therapy consultation to California public schools, aiding in the educational development of students with autism. On the weekends, Linda leads the Miracle 139 Special Needs Ministry at The Rock Church in San Diego, CA. Martin frequently consults California area churches looking to start or grow a special needs ministry.
Amy Fenton Lee is the special needs columnist for Children’s Ministry Magazine and the special needs consultant to Orange. She is also the writer behind The Inclusive Church Blog. Amy is an active children’s ministry volunteer in her home church. While Amy teaches in typical children’s ministry environments, she is always prepared to include a child with special needs.
When the Children’s Pastor is Impacted by Special Needs
Kristy Moser and I became friends last year when we were both slated to teach inclusion workshops at a children’s ministry 
conference. We immediately bonded on both a professional and personal level and have since worked together on a number of projects. For the past six years Kristy has served as the Early Childhood Pastor for Crosstown Children’s Ministry at Montgomery Community Church in Cincinnati, OH. Part of her responsibilities include overseeing the church’s special needs ministry, which serves 26 children and families each week. This past summer, Kristy gave birth to her second son, Wyatt. As you will learn below, along with Wyatt’s birth came a new and unexpected perspective on special needs ministry. It has been a joy and privilege to walk alongside Kristy in these early days, as she seeks to understand what it means to parent a child diagnosed with Loeys-Dietz Syndrome (LDS). And I am grateful that she has been willing to provide such a vulnerable and helpful interview for this blog.
Kristy recently launched her own blog, The Road Less Traveled, which has generated a flood of interest. You’ll understand from Kristy’s interview with me (below) why her new blog has been so well received. ~ Amy
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AFL: Being on the staff at a large church naturally places you in a visible position. Was it hard for you decide to go public with your son’s diagnosis?
KM: When Wyatt was first born we knew something was going on with his health. From the very beginning we were public in asking friends to pray for Wyatt. But because we didn’t have all the facts, we had a more limited circle of people who knew all the details.
I also quickly learned that people weren’t sure how to react when I indicated that Wyatt was being tested for some potential problems. The interaction sometimes felt awkward because I didn’t want people to always feel pity for me or for my child. I soon discovered that it was best for everyone if I shared less while requesting prayer through Wyatt’s first round of tests. I then conveyed our intent to share more information after our family had the opportunity to receive and process the results.
Once we received and understood Wyatt’s diagnosis, we shared the information publicly. Since I serve in a visible staff position, a lot of people approached me with questions and offered prayers. And it has been therapeutic to talk about our experiences. Sharing openly has allowed me the opportunity to educate people about what our son was going through and for how they can specifically pray. I KNOW it is the power of prayer that has helped Wyatt thus far and I KNOW it is through these prayers that our family has been strengthened. Talking publicly has also provided a way for us to show how God has touched Wyatt and our family.
AFL: Why did you ultimately decide to start “The Road Less Traveled” blog?
KM: I have discovered that a lot of people have taken a quiet interest in Wyatt and our family’s journey. I thought the blog could provide a way for interested friends to receive regular updates on Wyatt’s tests, surgeries, doctors’ appointments, etc. and to know how we wanted to be prayed for. I prayed about the idea of the blog and began to feel God’s affirmation in using it as a tool to connect with other families. My vision for the blog is that it will become more of a support group for parents who have kids with rare conditions. I am looking forward to featuring interviews on the blog, highlighting other families with kids with lesser-known diagnoses. I would love to see the blog become a connection place for parents like us and for them to find support through an online community.
AFL: Before you ever gave birth to Wyatt you were overseeing MCC’s special needs ministry and even helping other churches to become more inclusive. Now that you have walked the journey of the last few months, how has this experience changed your perspective on special needs ministry?
KM: The biggest conviction that I have received since Wyatt’s birth is that in the past I did not show enough grace to families impacted by special needs. I thought that I understood what it was like to parent a child with special needs, but really I didn’t understand. In the past when a parent of a child with a difference or disability would come to church and have an immediate expectation for accommodation it would frustrate me. And when families were perpetually late for church (whether their kids had special needs or not) it would drive me nuts! Once you deal with something “extra” like we have with Wyatt you can better appreciate things from the view of these parents.
Wyatt has obstructive sleep apnea and when he was first born he had to be on oxygen even during a car ride. So, it literally took us 20 minutes to get him in the car before we started driving. Hooking Wyatt up to the oxygen and a pulse oximeter was pretty trying. So as we adjusted to the new normal, we started off being 15 minutes late to every appointment in the beginning. This experience gave me a whole new perspective for parents rushing to get to church on a Sunday morning. I realized that for many impacted families, it literally takes all you have emotionally and physically just to get the family in the car. Now I can appreciate how hurtful it would be to be turned away after finally arriving at church. As a person who theoretically could be a gatekeeper, granting or denying access to a children’s ministry, I will not be a hindrance for these parents. They NEED to get to church just like I NEEDED to get to church.
AFL: You’ve shared with me the tremendous interest and support that your blog has generated. Why do you think so many people have connected with your blog?
KM: Part of the reason is because I serve in a visible position at my church. We have a great faith community that has wanted to know what was going on with our newborn and how to support us. I also think that people are drawn to the situation because it involves a baby. So many people have said to me, “I didn’t know how you watched your baby go through that.” In addition, because Wyatt’s condition is rare, the blog has provided an avenue for people to answer their own curious questions about his diagnosis.
AFL: So often I am talking on The Inclusive Church Blog about autism or other more recognized diagnoses. Wyatt has a lesser known diagnosis. Tell us about Wyatt and what makes him unique.
KM: Wyatt was born in August 2011. He is our second son. He loves to smile, giggle, coo and eat –a lot! Wyatt has a rare connective tissue disorder called Loeys-Dietz Syndrome (LDS). LDS was discovered in 2005 and currently there are only 300-500 cases worldwide. Wyatt is the only individual in our area that has LDS (that we know of) and he is the only known case with his particular mutation. Because the exon that is mutated has never been seen before, doctors are not 100% certain how Wyatt will be impacted. LDS and Marfan Syndrome have many of the same characteristics and Wyatt may take on characteristics of either diagnosis. No two cases of LDS or Marfans are the same. So, for Wyatt his manifestations are an aortic root dilation, a cervical spine malformation, obstructive sleep apnea, tortuous arteries and vessels in his brain and heart area, widely spaced eyes (the whites of his eyes have a bluish tint to them), micrognathia (a small jaw) and arachnodactyly (long fingers), hyper-mobility and a mild case of low muscle tone. Wyatt also is very long and thin. He has long arms and legs.
AFL: Speaking as a parent of a child with a less recognizable diagnosis, talk a little about the unique experiences of a family like yours?
KM: I don’t really get tired of explaining the diagnosis because it is kind of therapeutic. It does get old when doctors want to get their hands on Wyatt because they have never seen anyone with LDS. Many times his doctors will ask if their physician friends can take a look at him because he is so unique. And I let them because I know in the end it might help someone else. But it does get tiring and he is my baby, not some test case! Medically we have to work very hard because no one really knows what to expect and it can be frustrating to “just wait and see.” Many times we have to take the initiative when we think there is something going on with Wyatt and we want him evaluated.
Other parents who have kids with special needs understand what we are going through. Regardless of whatever their kid has going on, they have been where we are. They have grieved, they have cried, they have seen sorrow and most, like us, have seen the joy too. There is a HUGE comfort in finding someone whose child has the same condition in a rare case like ours. On the Loeys-Dietz Syndrome Foundation website there is a forum set up for affected individuals and parents. In the beginning of our journey I wrote a post, seeking connection with other moms. Several readers contacted me, one has even friended me on Facebook. It is comforting to see pictures of her little girl, who is about a year and a half older than Wyatt. It gives me hope that one day Wyatt will be able to walk and do things like a typical kid. The biggest thing this mom did was tell me that we had a new family, a family who knew what we were going through and who would be there for us. This was huge!
AFL: Has your children’s ministry team had to make any adjustments to accommodate Wyatt?
KM: We have not taken Wyatt to our nursery yet. I feel like our nursery staff would be totally capable of taking care of him but I simply cannot compromise his immune system. As we consider putting Wyatt in the church care, we only anticipate adjustments related to his gross motor skills. He may need extra support when sitting or learning to stand and walk. Looking further ahead, I’m not really sure what adjustments will be needed for Wyatt.
Everyone on our church’s Next Gen team has been extremely supportive of our family and of Wyatt. They have shown us grace and love when we needed both. They have prayed for us and with us. I could not ask for a better team to work with.
AFL: Has anyone said anything that made you want to cringe? What are some ways people have provided appropriate support?
KM: People will always say things that don’t make sense when they don’t understand what is going on. Because Wyatt wears oxygen at night he has to wear these things on temples called tendergrips. They look like round band-aids. So, people will come over to look at him (like they do with every baby) and say, “What are those things on his face?” It gets somewhat old. So, I try to be nice and just explain it to them. Sometimes I just want to tell people to mind their own business and not worry about it. J Early on (before we had a diagnosis and before I launched the blog) one person emailed me with questions about Wyatt’s issues. After I explained some of the details, they responded that they had a special place in their heart for “kids like Wyatt, kids who were disabled.” While well-intentioned, those were hard words to read. Wyatt is not disabled in any way. I know that the person who reached out to me had the best of intentions – they just didn’t realize how they came off.
The best thing that people have done is to simply pray for us. People have brought us meals and visited with us. We have been so thankful for their acts of kindness. But prayer is honestly the most appreciated demonstration of love.
When a Child Shows Signs of Autism – Part 3
Today is the last in a series of three posts addressing whether or not a children’s ministry team should address a suspected autism diagnosis with parents of a participating child. In Part 1 I shared two variances of a similar question churches often ask related to this question and the background on why churches seek guidance. In Part 2, I talked through the issue of whether or not it is the church’s responsibility to alert parents to a potential learning disability, such as autism.
In this post we’ll dive into the issue of addressing the concerns in light of a child’s challenging behaviors.
Do the concerning behaviors pose a safety risk? If the child in question has demonstrated unsafe behavior(s) then a more serious conversation with parents is both wise and warranted. If the safety of any participant is threatened, then action is required on the part of the church. It is both the legal and the moral responsibility of the children’s ministry team to provide a safe environment for every participant, including caregivers and volunteers. If a child is repeatedly communicating in an unsafe manner (e.g. hitting, biting, kicking, throwing objects towards others, running off), the church is obligated to address the concerns.
It is important for the church representative(s) to initiate the parent-meeting with the following in mind:
(1) Prayer is the single most important ingredient to ensure that the love of Christ exudes from the children’s ministry team in their conversations with the family.
(2) If a behavior is inappropriate or unacceptable for a child without special needs, then it is unacceptable for a child with special needs. This guideline does require judgment. For the child who lacks verbal communication skills and body control, she may spit in excitement. While her actions are technically inappropriate and arguably unhygienic, if no one’s physical safety is threatened there is little harm in overlooking the behavior. On the other hand, if the child is acting in a way that justifiably creates fear or the real potential for harm to anyone, then the conduct cannot be tolerated and must be addressed. Very often behaviors can be avoided and managed after understanding what a child is trying to communicate. For more ideas related to this topic, see the following two previous blog posts:
Addressing Aggressive or Unsafe Behavior
Providing written behavior management policies in the children’s ministry handbook may help to avoid hurt feelings while also setting up-front expectations for all participants and their parents. To prevent the perception or practice of discrimination, it is imperative that identical written behavior management guidelines are adhered to in both the typical children’s ministry and the special needs ministry environments. Enforcement of the behavior management guidelines should be uniform and irrelevant of a child’s ability or disability.
(3) Keep the parent conversation centered on the behaviors and not the potential diagnosis. By avoiding discussion of any potential special needs or disability, the church is protecting itself from accusations of disability discrimination. The conversation will be more productive if the focus remains on the solution. Without a disclosed diagnosis, hypothesizing around any potential disability is likely to create unnecessary tension and offend the family. The dialogue should remain centered around preventing, managing, and extinguishing the problematic behavior.
(4) Go into the parent meeting with possible solutions already in mind. Parents are much less likely to be offended if they don’t feel the church is searching for an excuse to “expel” their child. If the parents hear the team talking about a future that involves an ongoing relationship between the church and the child, the parents are more likely to respond favorably and with a spirit of partnership. Some parents may resist the church’s initial recommendation. But oftentimes a family will warm to the idea of a one-on-one buddy, chill-out time, or an alternative activity when they recognize the lengths the church is going to in order to help their child have a successful and positive church experience.
(5) Seek the guidance of the church’s insurance company and become familiar with behavior management practices in the local public schools. It is unwise if not illegal to respond physically to unsafe behaviors. Understanding how your local schools prevent and respond to undesirable behavior may help a church develop an appropriate policy. In addition, it is imperative that a church consult their insurance carrier and legal adviser when crafting an accommodation plan for high risk situations.
For an excellent resource, see Autism and Your Church: Nurturing the Spiritual Growth of People with Autism, by Barbara J. Newman (Friendship, 2011)
~ Amy Fenton Lee
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When a Child Shows Signs of Autism – Part 2
It is not uncommon to have a child participating in the typical the children’s ministry environment that exhibits behaviors associated with autism. Oftentimes the child’s parents have not alerted the kidmin team of any diagnosed or suspected learning difference. Inevitably, the child’s teachers and ministry leaders deliberate whether or not they should share their observations with the child’s family. Every situation is different and requires earnest prayer for discernment. There is no perfect answer for how to handle any individual child, family or church. However the children’s ministry team may want to consider the following factors and ideas when determining what to say (or not say) to the child’s parents regarding a suspected autism diagnosis.
See yesterday’s post, When a Child Shows Signs of Autism – Part 1, Question #1 for more background on why churches seek guidance on this issue.
Do the parents seem receptive to honest feedback on their child? If a parent openly expresses concern about their child’s mannerisms, inviting dialogue from their child’s teachers, then the door may be open for honest yet delicate dialogue. Nearly always an established and positive relationship is required before a parent can receive feedback from a church representative. In cases where it is sensed that the parents are dismissive of their child’s nuances, it is safe to assume the family is not ready to address the issues. There are a variety of reasons a family may not want to pursue testing or reveal an already diagnosed difference. Regardless, it is rarely if ever productive for the church to ”push” the idea of a potential disability with the parents.
Dr. Cynthia Zierhut, Clinical Psychologist specializing in the area of autism research and Founding Director of Capital Christian Center’s Champions Ministry (Sacramento, CA) explains,
“When I led the Champions Special Needs Ministry it was not uncommon for me to be pulled into a typical children’s ministry environment on a Sunday to discreetly observe a particular student. Indeed I may have seen signs of a problem that warranted a diagnostic evaluation. But even with my credentials, I would never approach a parent to suggest the need for testing or treatment. My purpose for observing the child in the church setting was to provide quiet guidance to the children’s ministry team. Oftentimes I could offer a strategy that would ultimately help the student or the volunteers.”
Zierhut reminds children’s ministry leaders that the role of the church is to aid in the spiritual formation of the family. Anytime a representative of the church expresses an opinion about a child’s educational development (or lack thereof), there is a risk of offending the parents and consequently losing influence. For two previous posts on a related topic see:
Avoid Controversial Topics & Remain Focused on the Mission
Should We be Discussing the Autism Vaccine Controversy?
Occasionally a children’s ministry caregiver or leader may approach the parent with a single observation. Barbara Newman, CLC Network Director of Church Services Division and book author, suggests beginning a brief and light-hearted parent conversation by first noticing some delightful things about the child. After sharing some affirming observations, the children’s ministry leader may inquire about the one biggest issue by asking a parent the question “Have you noticed…?” Newman warns children’s ministry teams not to approach a family with too much information. Parents nearly always need some time to process the feedback. In the meantime, the parents may have useful information to offer the teachers once the question has been asked. Newman points out that if a child has demonstrated a certain behavior more than once in the church setting, it is likely the family is familiar with the behavior. Parents may be able to explain the impetus behind the actions and offer advisement to help teachers respond in the most beneficial manner to the child.
For a church’s weekday preschool, the guidance may differ slightly from the above. Because part of the mission of a weekday preschool is to help a child prepare for kindergarten, the stage is already set to have discussions about the student’s educational and social development. Several years ago I made the decision to pursue a professional evaluation for my child because of what his preschool teacher shared in our parent-teacher conference. It was a logical part of the scheduled conversation to talk about my child’s academic strengths and challenges, and how immediately addressing a potential learning disability could help him in the long run. In the case of a church’s weekday preschool and their parent-teacher conversations, Barbara Newman’s advisement (above) still applies…it is ideal to point to the child’s strengths first, to begin the conversation with the question, “Have you noticed…?” and to allow parents to process one issue or concern at a time.
Stay tuned for Part 3, when we address instances where challenging behavior has emerged in the church setting.
- Amy Fenton Lee
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When a Child Shows Signs of Autism – Part 1
In late 2008 I wrote a short magazine article to help caring friends support parents who have a child with special needs. Not long after I wrote that article (which eventually ran in a 2009 issue of Atlanta Parent Magazine), I wondered how churches were doing at providing support to families impacted by special needs. I soon learned there was a need for a bigger conversation on this topic and I shifted my writing focus to the area of my primary love, ministry. It wasn’t long before I found a new passion and created a full-time hobby of researching and writing on special needs inclusion in the church setting. Now, as I begin my fourth year devoted to the topic of church and inclusion, it is fun to see the buzz surrounding special needs kidmin.
I hear from many of the blog’s readers or people who have participated in conferences I’ve been a part of over the past couple of years. Many of these new friends serve as volunteer caregivers, special needs ministry “champions,” children’s pastors, and executive pastors. (For more on the target audience of this blog, see The Premise of the Inclusive Church Blog.) Nearly all of the church leaders reach out to me with similar passions (to better include kids with special needs) and similar challenges. For today’s post I thought I would expound a bit on the common questions I hear from children’s ministry teams, explain the context for those questions, and set the stage for the next two blog posts. For the rest of this week I’ll offer guidance related to the following two questions.
Example Question #1 from Children’s Ministry Leaders:
“We have a child participating in our typical children’s ministry environment that exhibits behaviors associated with autism spectrum disorder. The parents have never mentioned anything about their child having any learning differences or disabilities. Our ministry volunteers have shared their repeated observations with our kidmin leaders. We are wondering, is it our ministry team’s responsibility to approach the parents and alert them to the potential need for testing or treatment?”
Nearly always the leader who asks this question cares personally for the child and sees opportunity for him/her to potentially benefit from testing and early intervention. At the same time, the ministry leader wisely recognizes the risk in pointing out a potential cognitive disability to a conscientious and sometimes fragile parent. Certainly the last thing the church wants to do is to make a vulnerable mother feel like a failure at her most important job! Or perhaps the church senses the parents are at least marginally aware but not yet ready to discuss their child’s differences or delays publicly. Whatever the case, it takes tremendous discernment and delicacy in deciding whether or not to communicate such observations to a child’s parents.
We’ll address potential responses to this question in Part 2.
Example Question #2 from Children’s Ministry Leaders:
“Johnny is a participant in our typical children’s ministry environment. His parents have not alerted us to any special needs. He consistently exhibits some unexpected behaviors that are proving to be a challenge to our volunteers. We have noticed that he also shows several signs of autism spectrum disorder. Because of some specific concerns we have related to safety, we feel that we need to talk with the parents. How would you advise us to approach the family and handle this situation?”
For the churches that contact me the central dilemma is not that a child with a potential special needs diagnosis is participating in the ministry environment. If a church doesn’t want to make a genuine attempt to accommodate the child, they don’t contact me. From the inquiring leader’s perspective, the challenge revolves around the desire to make the church experience more positive (and safe!) for the child, their peers, and the affected caregivers. And in this scenario, the the church isn’t sure if or how to initiate a candid conversation with the family.
Very often these questions come from a church that either offers a visible special needs ministry or at least has a protocol in place for accommodating a child with a learning difference. Sometimes the church leader talking with me wonders aloud if the parents are aware of the church’s capabilities yet reticent to have their child paired with a buddy or come in under the special needs ministry. Understandably many parents avoid a special needs label for their child. They want their child to be viewed with respect and to receive the same social opportunities as their typical peers. However this desire for privacy can occasionally add a layer of complexity for the children’s ministry team, who could benefit from a more open line of communication with the parents.
In Part 3 we’ll speak directly to Question #2. Stay tuned as we help a church craft a response (or not) for when a child shows signs of autism.
For a related post on this blog, see To Tell or Not to Tell: An Open Letter to Parents.
**Please note: This topic may be one of the more sensitive issues we have addressed on this blog. It is my sincere desire that the information in this series would help the churches who have a specific need for guidance in this area. Ultimately my goal is to help facilitate an inclusion success for every church and every family impacted by special needs. No two children with autism (or any diagnosis) will walk the same path or exhibit the same characteristics. Please read this series with prayerful discernment, recognizing that each child is unique and that the information shared here may not apply to the participants and experiences of every church.**
~ Amy Fenton Lee
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