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.  

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.

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 “Bad” Behavior

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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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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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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Many churches recognize the need to do a better job of welcoming kids with differences.  But oftentimes those same faith communities feel lost, unsure where to find useful information to equip the ministry volunteers and leaders.  While there is an abundance of information available on various topics related to disability inclusion, it can be challenging to figure out what guidance does and does not translate well in the church setting. As a researcher and writer focused on this topic, one of my goals is to sift through the avalanche of special needs-related information and then repackage the relevant ideas and practices for church leaders.

The wonderful thing about the 2011 edition of Autism and Your Church: Nurturing the Spiritual Growth of People with Autism Spectrum Disorder is that is it written precisely for servants and leaders inside a church.  It is a concise yet comprehensive manual that requires no translation for the big-hearted lay person called to help in a church’s special needs ministry.  A volunteer training session could be developed around the content of the book.  I have had the pleasure of hearing the book’s author, Barbara Newman, speak several times.  As I read through the book I could hear her gentle tone as she paints effective word pictures for a lay person, like myself, who has no credentials in the area of special education.  (Personal Note:  Barb is one of the most gifted communicators I have ever heard!)

Below is breakdown and brief description for each section of the book:

Introduction - This overview provides a number of valuable pointers for a church team that wants to more effectively minister to and with individuals impacted by autism.  This section could be especially useful for developing opening words at a volunteer equipping event for the children’s ministry and/or special needs ministry teams.

Section 1:  God’s Handiwork – The framework for the book and for how to view disability inclusion is established.  Again, wonderful ideas and analogies are provided to help every lay leader inside the ministry.

Section 2: Autism Spectrum Disorder (ASD) - The definition, explanation, and examples offered in this eight-page section of the book are worth the purchase price alone.  I have learned (the hard way) that trying to provide a definition of autism can be received offensively without a careful choice of words.  Barb does a beautiful job of respectfully and candidly explaining the ASD diagnosis in laymen’s terms.  Barb also weaves in stories of how differences attributable to ASD may show up in the church setting.

Section 3: Ten Strategies for Including Individuals with ASD - This 50-page section of the book is the meat of the resource.  Every page is packed with information valuable to lay leaders and staff members called to help anyone with autism (or any learning difference!) spiritually advance.

Some pointers in this section are general, such as suggestions for word choices in ministry literature (e.g. use the word “survey” to name the document used to solicit valuable information from parents about their child and their specific needs.)  Other ideas apply directly to the ministry environment and can help both the individual and the leader-volunteer experience success.  In this section Barb tackles issues such as:

• disclosure vs. privacy
• adjusting an environment to match an individual’s sensory needs
• understanding the sometimes unconventional communication of a person with ASD
• the value of preparing an individual for change and establishing routine (schedules)
• using varying types and means for communication
• ideas for how to compose  information stories to prepare an individual for a new social situation

Section 4: Behavior Management:  Including Individuals with Difficult Behaviors – Most likely every church in America could benefit from the ideas offered in this short but power-packed section.  So many of the suggestions can apply to children of all abilities but whom may have a variety of needs and life issues.

Section 5: An Action Plan – A step-by-step list is offered for a church in the early stages of developing or growing a special needs ministry.

Reproducible Resources – 17 forms and documents are provided where a church could copy or modify any of these valuable documents for their own ministry.  Included in this section are participant questionnaires,  informational stories/narratives, permission –  authorization documents, and an sample explanatory letter to typical families.

Recommended Resources - Eight organizations are named and described that offer different products or services from which a church could benefit.

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My concluding thoughts:  This book is a wonderful, practical resource for every church.  This 125-page “manual” is an easy read and provides a great reference tool for special needs and children’s ministry leaders.  The content of the book was developed to support both children and adults with ASD.  Also, it is a great credit to both the author and the publisher that the resource translates well across many denominations, theological persuasions, and  faith leanings.   The book is full of concrete, easy ideas that can be implemented immediately in ministry environments everywhere.  If I were leading a church’s special needs ministry, I would provide key ministry servants a copy of this book.  No, I am not paid for this review or endorsement.

Autism and Your Church:  Nurturing the Spiritual Growth of People with Autism Spectrum Disorder by Barbara J. Newman  (Friendship Ministries, 2011)  may be purchased through Friendship Ministries.

~ Amy Fenton Lee

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Homemade Sensory Jars – Small

1 small plastic canister (e.g. from Target)

1 drop food coloring (avoid using the color red as this is a stimulating color)

1 teaspoon glitter

1 Tablespoon liquid glycerin*

Hot water- fill remainder with hot water all the way to top

Super Glue – seal the top with strong adhesive before locking the canister

* Glycerin may be hard to find.  For small jars, 1 dropper of the baby glycerin liquid suppositories can be used as was done for the jars shown above.

Homemade Sensory Jars – Large

1 Large plastic canister (e.g. from Target)

2 Drops food coloring (avoid using the color red as this is a stimulating color)

1 Tablespoon glitter

4 Tablespoons liquid glycerin*

Hot water- fill remainder with hot water all the way to top

Super Glue – seal top w/strong adhesive before locking canister

Blue, green, and yellow are calming colors and therefore ideal to use when creating sensory jars.

Sensory heaven! These are those floral/ decorative beads you see in fancy showrooms.  The polymer-based beads are non-toxic and provide a fantastic squishy sensation after they have been soaked in water.  Kids may enjoy the tactile experience of running their fingers through a cup of hydrated beads or placing their hands in a bin full of beads.  You can also get creative and hide water resistant objects inside the bin of soaked beads, encouraging kids to go on a sensory treasure hunt.  ”Hiding” objects that relate to the day’s Bible lesson is a great way to reinforce the day’s teaching….small plastic sea creatures for Jonah & the whale; toy soldiers for any Bible stories that involve Roman soldiers; plastic animals for Noah’s Ark, etc.

Homemade Sensory Divinity

Floral/Decorative clear beads (found at Dollar Tree for $1 per jar)

Water to soak the beads

A large bowl or bin that allows kids to reach in their hands

Optional:  water-resistant “treasures” to hide in the divinity

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For more about Kelly Sapp, check out her recently launched blog, Profoundability.  To see many ideas like this one, follow Champions on Facebook.

Tagged: calming tools, Capital Christian Center Champions, Champions Ministry, Kelly Sapp, sensory activities in Bible lessons, sensory toys, teaching tools, toys for children with special needs, Transitions ]]> http://theinclusivechurch.wordpress.com/2011/12/28/homemade-sensory-toys-for-kidmin/feed/ 6 amyfentonlee Champions Sensory Jars Yellow & Green - main picture Champions Ministry Sensory Jar ingredients Champions Ministry Sensory jars - Pedia Lax Champions Ministry Sensory Divinity Champions Ministry swelling beads with hand in them Kelly Sapp CCC Director http://theinclusivechurch.wordpress.com/2011/12/21/merry-christmas/ http://theinclusivechurch.wordpress.com/2011/12/21/merry-christmas/#comments Wed, 21 Dec 2011 22:38:57 +0000 AmyFentonLee http://theinclusivechurch.wordpress.com/?p=2983 ]]>

I’ll make a confession:  I do not enjoy decorating my home for Christmas.  Rearranging furniture, lugging storage boxes up from the basement, and carefully placing breakables throughout the house feels exhausting to me.  I’d rather sit snug on my sofa with a Coke Zero nearby and crank out an article on a topic related to my one of my passions (like special needs inclusion).  I’m not naturally gifted in creating a visually appealing space.  As a result, I tend to avoid tasks that require channeling any remnants of interior design ability.   Only this past week (mid December!), after my husband reminded me that we have a child that deserves a fully decorated Christmas tree, did I finish adorning my tree with ornaments.

So my Christmas tree has now been up a few days and my house does finally look like December.  While sitting on my comfy couch this week (writing a couple of articles and with a Coke Zero nearby), I have found my eyes drawn to the beautiful lights on the tree.  It has been in some of these moments that I have realized that I need Christmas.   I need this time of year to remind me of what life is all about.  Without a Savior I lack purpose.  Without His forgiveness I lack eternal life.  And without His daily presence in my life, I lack peace.

To my fellow readers…many of you have a giant heart for both Jesus and for kids with differences.  Your passion for your faith and for disability inclusion drives you to give of yourselves sacrificially (emotionally and physically).  And occasionally those “offerings” come at a price.  It is in those low times that we have to be reminded why we do what we do…for the purpose of giving “Glory to God.”   My prayer for myself and for many of you is that in this Christmas season we will receive a renewed appreciation for the gift of Jesus Christ.  May we all experience a healthy re-charge this Christmas and find the “peace to men on whom His favor rests.”

Christmas Blessings,

Amy Fenton Lee

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The other day someone asked me what the church my husband pastor’s thinks about our two young daughters with Down syndrome. “Oh, they love the girls. We’re very blessed,” I replied right away without hesitation.

“That’s great,” the person replied. “How?”

“Excuse me?” I asked.

“How do they love the girls? What does your church do to serve you specifically as a family with kids who have special needs?”

It’s easy to assert that people in our church genuinely love our kids. They ask appropriate questions about their therapy regiments and health. If one of our girls is sick, someone shows up at our house with a meal. If I can’t make it to a church event due to a therapy appointment or a doctor visit, everyone understands. Evangeline, our fourth daughter, is adopted fromUkraine. When God called us to adopt, the church rallied around us. They prayed for us, and helped in practical ways, like locating notary publics free of charge, and donated financially to the adoption. When Evangeline finally came home, we had a dedication service at church to welcome her into the fold.

It’s more difficult to answer the second question. “What does your church do to serve you specifically as a family with kids who have special needs?” I have a list of desires and concerns regarding my kids and church that I don’t usually share. I would love for Polly to have a buddy on Sunday mornings to participate in Sunday school, not something she can do without an aid, and not something I can do with her every week and still support my husband and participate in other ministries.

And then there are potlucks. Full disclosure: as a mom to four kids and as a pastor’s wife, I hate potlucks. I struggle to get my daughters with Down syndrome to eat pre-arranged food brought from home while my husband pastoral works the room. I want to talk with people and catch up but I can’t, because I am pulled away by a kid. I worry about what’s next for Polly and Evangeline at church, too. Right now they are both in the nursery on Sundays. When will they move up to Children’s Church? And how will that work?

Our church family is loving and supportive, but I don’t think they serve us specifically as a family with special needs. Here’s why:

1) They don’t know what to do. Polly and Evangeline are the only kids in our congregation with special needs. We are just starting to build a strong children’s ministry in general. The added layer of kids (and adults) who are differently-abled and who may need a little extra assistance isn’t even on peoples’ radars. They aren’t aware of programs and places like this blog that help churches start ministries for individuals with special needs and their families.

2) We don’t ask for help. After ten plus years of ministry, it has been ingrained in me that our job is to serve others. If a couple needs marriage counseling, we give it. If a single mom needs help with her kids, we try to help. If my husband or I know a family in our church is struggling, we meet with them and pray, and seek out tangible ways for our church body to serve them. But when it comes to our family and our kids with special needs, we don’t ask for help. When I think about finding a buddy for Polly I quickly convince myself that our faithful congregants are maxed out with ministry. It’s uncomfortable to suggest a new ministry initiative that primarily benefits my family.

But I can’t expect people to guess that I could use an extra set of hands during potlucks if I haven’t made the need known. I am probably most interested in special needs ministry at church because of my kids but that doesn’t mean others don’t want to participate. I don’t know because I haven’t asked. It is a disservice to the congregation not to bring it up. Even if it seems self-serving, in actuality, it is Christ-serving. It is Jesus’ very heart to care about those around us. Matthew 25:40 “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’

Recently we had our church’s semi-annual business meeting. When it opened up for questions and comments, I timidly raised my hand. “I think we should pray about ways to be more inclusive on Sunday mornings for individuals with special needs.” I wasn’t sure what to expect with my suggestion, but thankfully my comment started a great discussion. Several people even approached me afterward with excitement and ideas about starting a special needs ministry in our church.

If your pastor’s family has a child with special needs, this is my request: Don’t assume they have enough support for their family because they are leaders in the church. I can say from experience that they need help. Be mindful that they may not ask but they still could use it.

If you are a leader (or a congregant) in your church and have a child with special needs: Please, make your needs known. If the church could better minister to your family, share your ideas with your people. Remember, it is not a self-serving request, but rather, a Christ-serving command from scripture. - Gillian Marchenko

Gillian Marchenko is a writer, speaker, and advocate for individuals with special needs.  Her writing has appeared in Mom Sense Magazine, EFCA Today, The Four Cornered Universe, and is forthcoming in Chicago Parent. She is a Chicago Special Needs Parent Examiner for Examiner.com and contributed on-line to Chicago Moms Blog and Grown in My Heart, an adoption network. She is also an administrator on Facebook for the Evangelical Free Church of America Special Needs Network page. Gillian lives in Chicago with her husband Sergei and their daughters Elaina, Zoya, Polly and Evangeline. Connect with Gillian on Facebook or Twitter, check out her website at GillianMarchenko.com, or follow her family blog Pocket Lint. 

This story is why I am so passionate about helping churches successfully include children with special needs.  Join me in celebrating along with Rhema’s mother…that one more child has been welcomed and included, and more importantly, introduced to “the most important book she’ll ever hold.”  

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These Words…

‘These words are spirit and life…’ (John 6:63)

I have long loved a tradition in our church of presenting Bibles to second graders. Each Bible has the child’s name on it, and it’s signed by the pastor. It’s a rite of passage, many of these children receiving their very own Bible for the first time. As the children stand before the congregation I believe they get the message that the entire church is supporting and encouraging them on their journey of faith.

Several weeks ago we received an invitation via e-mail for Rhema to participate in the upcoming Bible presentations. I stared at the e-mail suspiciously for a good ten minutes not knowing what to do. For a moment, I honestly thought I’d received the e-mail in error. I’d forgotten that Rhema would be a second grader now if she had been in a typical school setting. And it never occurred to me that she could or would ever be a part of the church ceremony.

For days I hemmed and hawed, rehearsing the can’ts and won’ts in my mind. She won’t be able to stand still. She can’t even sit in the sanctuary for 10 minutes. She won’t understand what’s going on. She can’t even read. Isn’t the whole point of this to entrust Bibles to children who can read and understand?

Finally, I mentioned it to Brandon. “Do we want Rhema to participate?”

“Of course!”

“Oh.”

Then I knew. Of course. Of course she would go to the front of the church and accept her Bible just like the others. It would be different for her, yes, but meaningful still. Her Maker, limitless, His imagination and purposes so much bigger than mine.

And this is what I’ve been praying for and talking about for years – to see a more inclusive Church, one that ministers to, embraces and celebrates people with special needs. I’m so thankful for the church communities of which my family is a part.

A Bible for Rhema. Who can say if she’s listening or understanding? Nevertheless, we’ll read it to her. While she’s running and spinning around the room. We’ll pray it over her as we tuck her in at night. We’ll write it out and post it on her door. We’ll say it to her in moments of discouragement and moments of triumph. Because no other word has power like this Word, to teach, heal, encourage, save. Because the word “rhema” means God’s Word spoken, revealed. Because words will come and words will go, but the Word of the Lord stands forever.

As it happens, I was out of town the day of the ceremony. But father, sister and grandmother were  there. Brandon walked her to the front and sat with her on the front pew while the others stood and the Pastor said a few words. And then, at just the right time, Rhema received her Bible, the most important book she’ll ever hold. ~ Reposted with permission from Rhema’s Hope Blog