Language Delays, Church Inclusion, & Information You Need

Picture this:

There's a young boy with an Intellectual Disability sitting in a children's church. He only says a few words. The teacher at church wonders how he can participate more while he is in class.

There's a young teen with Down syndrome who is very social and enjoys church. The teen is verbal but struggles to understand and answer questions. The teacher at church wants to make sure the teen is understanding their lessons to encourage spiritual growth but isn't sure what to do differently.

While the other children in Sunday school sing in worship, there's a student with little verbal speech standing quietly. The church volunteer would like to see the student participate in worship, but she doesn't know how to encourage participation.


It is a beautiful thing to see people with disabilities attend church. Much like in a school setting, churches often need to make accommodations to make sure these members can learn, participate, and grow in their faith just like anyone else.

At a couple of different ministry conferences last year, I presented a workshop called "Supporting and Teaching Children who are Language Delayed, Minimally Verbal, or Nonverbal." As a pediatric speech-language pathologist and the mother of a child with minimally verbal speech, I was excited to share some ideas and knowledge I have collected over the years.

After my presentation at the Inclusion Fusion Live conference in Cleveland, Ohio, I wrote a few posts for Key Ministry highlighting portions of my presentation. These include:

Tips for Starting Sign Language in Your Special Needs Ministry

How to Develop Prayer in Children with Little Speech

How to Help Those with ID/DD Understand Baptism


On April 24 & 25, 2020, I'll be back at Inclusion Fusion Live. This conference is perfect for ministry leaders, families, and those caring for individuals with disabilities. My topic this year will be "30 Ways to Include the Person with Severe Language Delays." The title sort of sums up my talk, but I'll be sharing ways we can include people with more severe language delays at church during prayer, worship, lessons, fun & games, etc.

As a bonus for reading this today, I'll share with you two of those ways to include those with severe language delays that will be further discussed in April.

#1. Consider having live music for your students. 
A guitarist or pianist is an excellent addition to your worship time (as opposed to CDs or videos) because the musician can adjust the tempo of the music to better fit your students' needs. People who are minimally verbal or struggle to put sentences together can benefit from music played at a slower pace. Individuals with Intellectual Disabilities may process information slower and therefore benefit from a slower tempo. 

If you think finding a musician may be difficult, think outside the box. In our church's special needs class, my 10 year old son plays his guitar a few Sundays a month. He isn't the perfect guitarist since he's young. However, the kids look past his mistakes and enjoy his music. His acoustic guitar isn't too loud, so even those with sensory processing disorder have enjoyed it. He's adjusted the songs so that we sing them slowly. This has allowed singing to occur for the students who were struggling to sing along to videos.

Live music allows you to sing a song a few times in a row. Repetition is helpful for those who need more time to process or learn the words. A musician can also play choruses of songs and omit verses that have verbiage that may be too hard for our students. In short, you can customize your worship to fit the needs of those in your class.


#2. Compile a list of conversation starters for the volunteers. 

Sometimes, the most seasoned volunteer just doesn't know how to begin a conversation with a child who is nonverbal or minimally verbal. At our church, we have a communication chart for volunteers to reference. It lists some things the child is interested in so that volunteers can start conversations and find common ground. For my daughter, Beauty and the Beast, Disney Princesses, pizza, and her cousin Gabby are all listed. Even though she can't have full conversations, a new volunteer can make comments that can connect with the her interest. ("You're coloring with yellow. Princess Belle wears a pretty yellow dress.") 

You may be wondering how to gather this information. When a new student attends our special needs ministry class for the first time, we have a one page paper of various questions to ask parents in order to know how to best support their child. One of the questions is about the student's interests. This is a great thing to know for reward systems and to understand what topics a child may enjoy talking about. Some children may not be able to respond to general questions ("What video games do you like to play?"). But, by making a comment or asking a simple yes/no question about an interest, we may have better success at connecting with the child ("My son loves Minecraft. I like the chickens on it. Do you like the chickens on Minecraft?"). If I know a child likes animals, I may pull up a picture of my cat to show them and start a conversation. Getting the information from the caregivers takes the guess work out for the volunteers. 

At the conference, I'll be giving about 30 more of these tips for churches to foster inclusion of those who are nonverbal, minimally verbal, or language delayed. I really hope to see you there in April!

To learn more about the conference or register, check out the website. 

How To Include All Families at Church During the Holidays

I recently had another post on Key Ministry's website. In case you missed it, here's the beginning of the post with a link to the full article. The holiday season often brings about special events in churches. From live dramas, choirs, dinners, and parties, there’s a variety of activities that local churches host to celebrate Thanksgiving or Christmas. Will the local church include all members and their families during these celebrations?

As churches plan their special events, there are two things they need to consider.

1. Are families of children with special needs and disabilities attending your special events?
Whether it’s a meal or a special service, the church should strive to see all members attend their seasonal activities. If certain families with children with special needs have not participated in the past, then strive to change that. The easiest way to understand their point of view is to simply ask them why they haven’t attended in the past. There may be a wide range of answers from a time conflict with their daily schedule or issues related with bigger crowds. Take time to listen to the family. Hear their responses. Be willing to help accommodate any needs to help them attend. Some things have easy fixes.

Continue reading here!

Diagnosed: 3 Views from the Church Body

Last month, I had a post on Key Ministry called, Diagnosed: 3 Views from the Church Body. I wanted to talk about the way a child's diagnosis is perceived by Christian people, the remarks they tend to say based upon their perceptions, and questions these views have brought me. I've written a similar post on this blog, Does God Make Down syndrome, which has been viewed every week for the last 3 years making it my popular. If you missed the post on Key Ministry, here's the start of it with the link to the full post below.

When my daughter was born with Down syndrome and a heart defect 12 years ago, my eyes were opened to how people within the church view health, illness, and disability. I was always in good health, so I never knew the attitudes and beliefs held by some and how they were expelled in and outside a church building.

After my daughter was born, I experienced how Christian people view and treat those with a diagnosis. It seems that I have encountered 3 strong views among people. Some of these have resulted in positive experiences and some negative.

1. My child’s diagnoses were from God.There are some who strongly feel like those with various disabilities, especially those with Intellectual Disabilities, are special angels sent directly from God. People who believe this say things like: God must make so many people with Down syndrome, and He chose you. God gives special children to special parents. God chose you to be her parents, because He knew you could handle it. Having a child like yours is a special blessing from God. Special kids are special blessings.

Keep reading. Click this link. 

A Small Change at Church Created a Big Problem

Recently, I had a post on Key Ministry about how an ordinary church outing turned chaotic due to a small change in our routine. Here's the first few paragraphs with the link to the whole post below.

How a Small Change at Church Created a Big Problem

My daughter loves going to church. In fact, Jaycee spends part of her Saturday night picking out the right dress to wear the next morning.

“Get your Bible,” I tell her before we leave. Jaycee races to her bedroom and retrieves it quickly.

“Class. Friends,” she signs.

“Yes, you’ll see your friends in class at church,” I tell her.

On this particular Sunday, my daughter and I were both wearing dresses and captured the moment with a picture. With our outfits documented, my kids and I climbed into the car to head to church while my husband left for work.

The drive to church was ordinary as we joyfully sang along to the Christian radio station. I drove down the road to enter the church from the rear parking lot as I normally do. That’s when our problems began.

The back entrance was roped off, so I had to enter another way. The yells started from my daughter, who was mad that I didn’t make the turn she was expecting.

To keep reading, click the link below!!http://www.keyministry.org/church4everychild/2018/8/30/how-a-small-change-at-church-created-a-big-problem

Devotions For Families with Special Needs or Medically Fragile

As I posted earlier in the summer, I have had some extra writing opportunities that are keeping me busy, and I wanted to share some of them today.

First up.... a devotional book:

Summer Devotions for Special-Needs Families is a book packed full of short devotions for families that have a child with a diagnosis. It was edited by Sandra Peoples and a number of Christian writers contributed to the book. Being on the Key Ministry Writing Team, I was blessed to be able to contribute a few devotions. If you are looking for something new to read, consider this book. Some of the topics are summer related but many are good to read any time. You can find this book on Amazon.


Next....a new piece: 
I recently had another post on the Key Ministry website called Reaching Out to Homebound Families. I, personally, have been homebound with my daughter for weeks or months due to her health issues. Being isolated at home can be very difficult, especially when you want to stay connected to a church. This post was written, so churches can help families in similar situation. Here's a snippet:

In a perfect world, all those in the faith could attend church every week as they desire. Life, however, presents all sorts of challenges making church attendance impossible or difficult for some families. There are some individuals who are homebound long-term due to a health condition and cannot attend church. Some families, like mine, have temporary homebound times which may occur after a child recovers from a surgery or serious illness, for example. Other families do not feel their child has a safe place in their church, because there is no one there equipped to handle their child’s needs or behaviors.

Whatever the reason, there are families who desire to attend church but cannot. Listening to sermons without attending church is relatively easy as many churches share them through podcasts, online videos, CDs, and social media. These outlets are great but hearing a message and feeling connected to a church are two different things. Interacting with people, having an opportunity for face-to-face prayer with someone, and receiving little words of encouragement are all missed by the family that is homebound.

Click here to keep reading...

Intellectual Disability: Preparing for Baptism

Last week, I had a post on Key Ministry's website offering ideas on how to prepare those with Intellectual Disability (ID) and Developmental Disability (DD) for baptism. If you missed it, check out the beginning of the post and then click the link to read. 

Baptism is a sacrament that many in the faith want to pursue. But, what if your loved one has an Intellectual Disability (ID) or Developmental Disability (DD)? Can they be successfully baptized? How do you help them understand and prepare for baptism?

As a Christian mother, I had a God-given desire to see my child with Down syndrome baptized a few years ago. At the time, she was 8 years old, nonverbal, and dealing with a myriad of health conditions.

I was puzzled, at first, on how to prepare and teach her, but then I realized I knew what to do. As a pediatric speech-language pathologist, I help children understand new situations and concepts all the time using multiple visual and auditory methods. I just needed to apply them to a religious act.

Click this link to keep reading!

Dear Pastor, Thanks for Baptizing My Child with Down syndrome

Pastor Chad,

It's hard to believe that almost 3 years ago, I watched you baptize my little girl, Jaycee. You probably have no idea what that moment meant to me and my family.

In my eyes, Jaycee had been part of our faith for a few years. Jaycee has always enjoyed going to church, insisted on using her talker to pray before meals, understood Jesus and his importance in Christmas, and loved to worship God.

Our church, like many others, generally believe that in order to be baptized, someone should first confess Jesus as their savior with their mouth. Having Down syndrome and only speaking a few words, this prerequisite seemed almost impossible for Jaycee.

I often wondered when I watched other children being baptized when Jaycee's day would come. How and when would this happen?

In 2013 as I sat in the intensive care unit, I was afraid Jaycee's moment had passed. Jaycee was on a ventilator and a room full of IV pumps and machines needed for the treatment of septic shock and pulmonary and cardiac failure. That month in the hospital was scary and almost life ending. But, she made it! I left the hospital with a sudden desire to get Jaycee baptized. When Jaycee was discharged on October 19, there was so much to do with her recovery that I pushed the baptism on the back burner.

Finally, I got brave and asked my husband about baptizing Jaycee. He was unsure but after some time to reflect, he decided it was a good idea. Still, I did nothing. I was afraid to ask you to do a baptism on a minimally verbal child. I was afraid you would say no. I know you take the act of baptism seriously and I was afraid you would think I was making Jaycee do this. I was afraid of the rejection I would feel for myself, our family's special situation, and Jaycee if you said no. I didn't want to face that rejection.

For months I trudged along with the thought of baptism coming less frequently. Then, we suddenly found ourselves in the intensive care unit with Jaycee again when a simple dental procedure resulted in aspiration pneumonia. After a scary day in the hospital spent teetering on putting Jaycee back on a ventilator, I told my husband, "If she makes it out of here, she's getting baptized! We can't wait!"

When things settled down, I bravely wrote you an email expressing my desire for Jaycee and trying to make a case for her to get baptized. I waited (impatiently) for a response and became nervous when I saw you responded back. You said you were going to pray about it. I admired you for not telling me no right away. As I waited for your final response, I came up with alternative plans some of which involved baptizing her in a hot tub with a clergy off the street.

With nervousness, I opened your final email in which you agreed to baptize Jaycee if it was our desire. You came up with a plan to baptize her after service so that she could take her time and have her family gathered around her to make her comfortable. You had enough forethought to ask me about her comfort level with water. A date that worked for both of us was set.

I had some time to prepare Jaycee for her baptism. We watched YouTube videos of people getting baptized. I wrote Jaycee a special story about it using words I knew she would understand. Then the week before the special day, I started to practice baptizing her in the bathtub without actually taking her head under the water. She understood what she would do, and I was confident she could do it.

On October 19, 2014, eight-year-old Jaycee entered the water with a smile on her face. Her family and close friends surrounded her to witness this happy occasion. You spoke to our family briefly and then to Jaycee trying to use some of the words I used with her. Then the big moment came and Jaycee wasn't scared at all. She left with the same smile on her face. There were tears that day but none of them were from her. It wasn't until later that I realized what happened on October 19th the year before making it even more special. (Read above if you missed the date connection!)

I wish you could have seen Jaycee watch the video at home later while she smiled and cheered for herself. From that point on, when she referred to her baptism, she signed "swimming." You missed the moment in the church one Sunday when Jaycee pointed to the door leading to the baptismal and signed "I went swimming there." I wish you could have been in my living room the day I was watching one of your sermons online when Jaycee looked at the screen and signed "That guy and me swimming." In her bedroom, Jaycee looks at her baptism pictures and has told many visitors of her "swim" at "church." You missed the conversations with me and other parents of children with special needs when they asked me how Jaycee did the baptism with no fear and wondered if their child could do it too. Since you missed these things, I want you to know how much that day meant to us, people who witnessed it, and other families with children with special needs.

When we found ourselves back in the intensive care unit since then, I was comforted by the fact that Jaycee was baptized. For that, I thank you. I thank you for allowing Jaycee to take part in her faith even if she can't do all the steps everyone else does. Thank you for helping our family have that special memory in the church and not in some one's hot tub.

We'll be sure to remind Jaycee of what she did on this date every year, so she'll never forget.

Evana

Therapy Tip: Taking your Child with Special Needs to Church

It's therapy Thursday! This is the day that I share a tip based upon my experience as a pediatric speech-language pathologist and a mother of a child with special needs. Today's tip is:

Keys for Taking your Child with Special Needs to Church

When your child has special needs, certain places just aren't easy for a variety of reasons. Church is often one place that parents are hesitant about or have had difficulties with in the past.

One hindrance for church attendance and our children is that there is little support. This is not a dig at churches; it is a reality. At school, our kids have educational plans, special support systems in place, therapists, and possibly individual aides. At home, we parents have mastered our children's strengths. We also know their triggers and how to help them regulate themselves when they are upset.

Then there's church. If you are like me and attend a church where your child is "dropped off" in a classroom away from you, it can be very scary at first. But, I can tell you that having a child with special needs attend church is possible.

That being said, every child is different. Every church is also different. It may take make trial runs. It may take many weeks and months, but I am optimistic that there is some church in your area that is willing to work with you to help your child.

Here's some keys to help make church a place where your child can succeed.

First, give some notice.
If you are starting a new church or class, it might be wise to call ahead and speak to someone in the youth ministry. You might feel strange doing this but hopefully the church contact will be courteous and listen to your concerns. If a church has no experience with special needs, I wouldn't let that stop you from trying it out. All you need to find is people who are willing to listen and serve your child.

When we started a new church when Jaycee was 5 years old, we kept her in sanctuary with us for several weeks. She did well in the adult church, so thankfully that was an option for us. When we decided we would be staying at the church, I approached the children's church teacher at the time to let her know Jaycee would be joining their class. We chatted for a few minutes about Jaycee's needs, and she was ready for her the next week.

Jaycee (middle) praying with children at Bible School

Offer help to the leaders.
You know your child well. You can offer great advice and insight into your child to help them succeed. Most of the people working in youth ministry are volunteers. Few have special education training. You can't expect them to understand your child's diagnosis or what to do. But, you can help these people understand your child so that the time in church can be peaceful for them and your child. Give church staff ideas on things that calm your child or things that will trigger problems with your child.

When my daughter moved up to a new class in our established church, I had reservations about her adjustment to it. The first Sunday she was in the new class, I offered to sit with her and a volunteer who would be her helper for the next few weeks. As class proceeded, I told the lady what her mannerisms meant, when she was happy, and when things were bothering her. It was one Sunday that I gave up to give Jaycee the best shot for the next few weeks. It worked.

Another thing we did when she switched classes was to create a "Tips for Jaycee" sheet. Because there were different volunteers on Sundays and Wednesdays, we made a one page paper of basics to help the volunteers know and understand Jaycee. Some things on it were: Jaycee needs to be reminded to use the bathroom, Jaycee loves dancing and music, If Jaycee sits on the floor between the seats that means she's scared, etc. This helped all of the volunteers feel comfortable when interacting with Jaycee, who was nonverbal at the time.

Prepare your child.
If there is something that helps your child do well at school or in other situations, then use it to your advantage at church. If your child responds to social stories, then make one to explain what happens in class. If your child thrives on schedules, create a schedule of what happens in class so that they will know what to do. If they are anxious about when class will be over, come up with a way to help decrease the anxiety.

If someone at the church can't provide and make these things, then find other resources. If you can make them on your own, then offer to do this. If you have no way of making visuals or schedules for your child, then ask a friend, teacher, therapist, etc. Beg them if you need to.

Jaycee in front of the stage dancing to songs at church

Be patient.
Change often takes adjustment. This is true for everyone involved. It may take the church staff a few encounters to learn your child and know how to respond in different situations. If your child only makes it through half of class and needs to leave, don't give up. Brainstorm with the leaders and be willing to help. Be patient with leaders who are trying to work with your child while taking care of other children in the class.

Offer suggestions, not demands.
Many people in the children's ministry are volunteers. They are giving up their time and energy to serve your child and many others. Even though I have discussed things like schedules and visuals, please don't demand the church make these. Offer suggestions and ways to help. Suggestions are most likely better received in any place, even church.

Sometimes, there is a debate on what class a child should be placed in. One person wants the child in the class that is for their age/grade. Another person may want the child in the class that is based more on their developmental abilities. Again, I think you need to discuss your concerns, ask questions, and give your input. Placing a child based on chronological age or developmental age is a case-by-case decision. I think there are many factors to consider with this, and there is no right or wrong placement. Just be willing to try out different classrooms or visit them for yourself in order to help decide what may be best. If you are demanding that your child be in a certain classroom, then you may need to sit and discuss with the church leaders why your opinions are different and get their side of the story. Hopefully, they are willing to do the same with you.



Taking your child with special needs to church doesn't have to be stressful and difficult. There may be some bumps in the road. You may have to do some work to figure out what will help your child, but I pray you will find things that will indeed help. I hope you will find a church full of people willing to work with your family to see your child grow in God.

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.

Meet Jaycee: I Can...

This week for Down syndrome Awareness Month, I will be featuring a person with Down syndrome to celebrate and showcase their abilities. There will be many fantastic guest writers this week as they share about a loved one in their life with Down syndrome!

I'll be kicking this "I Can" series off with my own child, Jaycee.

Meet Jaycee

Jaycee being baptized at our church

This is Jaycee, and she can be part of a church!

From an early age, my husband and I have always tried to include Jaycee in our faith. From attending church, to listening to Christian music, to reading Bible stories to her, and praying over her, my husband and I wanted Jaycee to know and understand our faith as much as she could. Jaycee is now 10 years old and in 4th grade.

As Jaycee has gotten older, our desire has been to see Jaycee be loved by a church family. We do not want people in a church to look at her as someone who needs healing or must be pitied. We want her to be embraced by a church body who is willing to see the perfect spirit inside of her. We found that Jaycee has been accepted and loved by our church at Crossroads.

Jaycee loves attending church with her family and friends. Jaycee will often start signing to me on Saturday, "Church?"

I remind her that church is the next day. Then, she will go to her closet and select a dress for church in anticipation of Sunday. Jaycee happily carries her Bible in to her class (Kidz Lab) and is greeted by peers who speak to her. Some have asked me how to say certain things in sign language, so they can communicate better with her.

We love to see Jaycee enjoy church and have friends there. But, we love to see her growing in the faith as well. Jaycee was baptized 2 years ago with support of our church body, and she now participates in communion. Although, I am sure she wonders why the portions are so small!

Jaycee praying with peers at church

Jaycee's church class leader, Becky, has this to share about Jaycee:
Oh how I wish every kid felt as free to worship the Lord as Jaycee does. I am not exaggerating when I say she captivates us all. What a leader! Jaycee loves to be on stage, and she doesn't miss a beat when it comes time to worship and dance. She has no idea the joy she brings to everyone in the Kidz Lab. We have several kids that argue over who is going to get to sit by her on any given week. It's like she has her own personal paparazzi that follow her around. She is so well behaved and loves to learn about Jesus as much as she loves to praise Him. She is also a great big sister. She loves to hug on Elijah any time he will let her in class.

We feel blessed that Jaycee can be part of a church just like her father, brother, and I.

This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!

The Mistake I Almost Made

Last week, I published To the Pastor Who Baptized My Daughter. It had a good response, but it wasn't my plan for last week.

I originally started writing "Is there a place for Jaycee at church?" The idea for this came from a negative experience I had with a Christian recently. This sweet lady told me about praying for Jaycee, which I was glad to hear given her health problems. But then she went on to clarify that she's praying for Jaycee's Down syndrome to be healed and encouraged me to believe.

That statement hit me like a punch to the stomach. Let me explain the best I can. I believe in healing, but I guess I'm long past thinking Jaycee needs healed of her Down syndrome. When a Christian says that to me, I hear: "Your child needs to be healed in order to be ok in church."

Maybe you think I'm off base, but I have had experiences within the Christian faith that you haven't. I have had people suggest (or accuse) me of sinning to cause my daughter to have problems in her life. I have been encouraged to get the demon out of Jaycee's life so she could be healed of Down syndrome. These experiences leave me feeling like a second-class citizen in church at times.

I left that encounter with that lady with my head down, my mind racing back through previous comments I took offense to, and feeling bad about my family.

"Will Jaycee ever be completely accepted in church?" I asked my husband.

I teeter totter back in forth with this question as a person of faith who believes in prayer but also believes that people with chronic health issues and disabilities need to be accepted in some respects just as they are.

I just want Jaycee to be viewed as someone worthy of being in church even if she has Down syndrome and health issues. I don't want random people to walk up and start praying for her chromosomes making her feel bad about herself, especially as she gets older. I look past her Down syndrome. I love her the way she is. I don't want her to struggle but I don't want her to think she is less than because of 1 extra chromosome.

Getting back to my mistake....I was going to write a blog about all of this and how Jaycee doesn't fit well into the church. I struggled to write this blog. I typed, erased, retyped, cut, deleted, and finally stopped. Then God put on my heart the idea for the letter to Pastor regarding Jaycee's baptism.

It was as if God was answering the very question I was asking. Is there a place for Jaycee at church? The answer is yes. Jaycee was accepted enough by our pastor to get baptized while surrounded my many family and friends in support of her. More importantly, God accepts Jaycee. I believe God is pleased when Jaycee dances in church and wants to sit in the front row. I think God looks way beyond the Down syndrome too into her heart.

Maybe not every Christian will say and do the right things with Jaycee, but their intentions are good. Their heart is in the right place. They want the best for Jaycee, and I should not let their word choice bother me and get me down. I too have said many dumb things over the years that hurt people unintentionally. Therefore, I will extend that same grace to those as I wish to have for myself.

I'm thankful I didn't write that blog full of frustration and hopelessness, and I'm glad to be reminded that Jaycee does have a place with God and in the church.

Jaycee praying with a group of children at church.

To the Pastor Who Baptized My Daughter

Pastor Chad,

It's hard to believe that almost 1 year ago, I watched you baptize my little girl, Jaycee. You probably have no idea what that moment meant to me and my family.

In my eyes, Jaycee has been part of our faith for a few years. Jaycee has always enjoyed going to church, insisted on using her talker to pray before meals, understood Jesus and his importance in Christmas, and loved to worship God. Christians generally believe that in order to be baptized, they should first confess Jesus as their savior. Having Down syndrome and only speaking a few words, this prerequisite seemed almost impossible for Jaycee.

I often wondered when I watched other children being baptized when Jaycee's day would come. How and when would this happen?

In 2013 as I sat in the intensive care unit, I was afraid Jaycee's moment had passed. Jaycee was on a ventilator and a room full of IV pumps and machines from being in septic shock and pulmonary and cardiac failure. I suddenly had a burning desire to get her baptized. When Jaycee was discharged on October 19, there was so much to do with her recovery that I pushed the baptism on the back burner.

Finally, I got brave and asked my husband about baptizing Jaycee. He was unsure but after some time to reflect, he decided it was a good idea. Still, I did nothing. I was afraid to ask you to do a baptism on a minimally verbal child. I was afraid you would say no. I know you take the act of baptism seriously and I was afraid you would think I was making Jaycee do this. I was afraid of the rejection I would feel for myself, our family's special situation, and Jaycee if you said no. I didn't want to face that rejection.

For months I trudged along with the thought of baptism coming less frequently. Then, we suddenly found ourselves in the intensive care unit with Jaycee again when a simple dental procedure resulted in aspiration pneumonia. After a scary day in the hospital, I told my husband, "If she makes it out of here, she's getting baptized! We can't wait!"

When things settled down, I bravely wrote you an email expressing my desire for Jaycee and trying to make a case for her to get baptized. I waited (impatiently) for a response and became nervous when I saw you responded back. You said you were going to pray about it. I admired you for not telling me no right away. As I waited for your final response, I came up with alternative plans some of which involved baptizing her in a hot tub.

With nervousness, I opened your final email in which you agreed to baptize Jaycee if it was our desire. You came up with a plan to baptize her after service so that she could take her time and have her family gathered around her to make her comfortable. You had enough forethought to ask me about her comfort level with water. A date that worked for both of us was set.

I had some time to prepare Jaycee for her baptism. We watched YouTube videos of people getting baptized. I wrote Jaycee a special story about it using words I knew she would understand. Then the week before the special day, I started practice baptizing her in the bathtub without actually taking her head under the water. She understood what she would do, and I was confident she could do it.

On October 19, 2014, Jaycee entered the water with a smile on her face. Her family and close friends surrounded her to witness this happy occasion. You spoke to our family briefly and then to Jaycee trying to use some of the words I used with her. Then the big moment came and Jaycee wasn't scared at all. She left with the same smile on her face. There were tears that day but none of them were from her. It wasn't until later that I realized what happened on October 19th the year before making it even more special.

I wish you could have seen Jaycee watch the video at home later while she smiled and cheered for herself. From that point on, when she referred to her baptism, she signed "swimming." You weren't in the bathroom with us one Sunday when Jaycee pointed to the door of the baptism and signed "I went swimming there." You weren't in the living room the day I was watching one of your sermons online when Jaycee looked at the screen and signed "That guy and me swimming." You haven't been in her room to see the pictures displayed that church gave us of her baptism so she can look at, remember, and tell visitors of her "swim" at church. You weren't there when other parents of children with special needs asked me how Jaycee did the baptism with no fear and wondered if their child could do it. Since you missed these things, I want you to know how much that day meant to us, people who witnessed it, and other families with children with special needs.

When we found ourselves back in the intensive care unit just a few months ago with Jaycee in respiratory failure again, I was comforted by the fact that Jaycee was baptized. For that, I thank you. I thank you for allowing Jaycee to take part in her faith even if she can't do all the steps everyone else does. Thank you for helping our family have that special memory in the church and not in some one's hot tub. We are looking forward to talking to Jaycee about her upcoming baptismal anniversary, and it's all thanks to you!

Evana

31 for 21: Teaching Baptism

Blogging 31 for 21 continues with Teaching Tuesday:

Today, I will teach you how I taught Jaycee- an 8 year old sign language using non-verbal child with Down syndrome- about baptism.


My steps:
1. I guess it goes without saying that the first step was to live out our Christian faith. We go to church every Sunday unless there is an illness or she's in isolation for a medical reason. We listen to Christian music. We pray together. We talk about God. When she's sick, we pray for her. At Christmas and Easter, we really talk about what that means. Basically, I think the first step was to set the foundation for years.

2. When baptizing became an idea, I understood that many Christians believe salvation is the precursor. So, for months off and on, I would say things to Jaycee like, "God loves you. He sent his son Jesus to die for you. Do you love God? Do you believe in Jesus?" Basically, I asked her simple questions and talked about the essential salvation points. Sometimes, she would do her grunt for yes and sometimes she would say nothing. I had these little conversations here and there for months. Jaycee cannot talk. Therefore, she cannot say a traditional prayer of salvation.

3. After some time, I talked to our pastor about baptizing Jaycee. We came up with a plan that we were all comfortable. Instead of getting baptized during a service, we would do Jaycee after the service by herself. This way Jaycee could take her time and have her family close to her. With a tentative date in mind, I worked on these next steps.

4. I wrote out a book for Jaycee that hit the major beliefs Christians have, why someone gets baptized, and what happens in a baptism. There was nothing fancy about it. But, I know Jaycee learns from repetition, and I have used books like this in the past to teach other things. It's a good strategy for her. She liked the book. We read it regularly.

 

5. Next, it was time to bring in youtube. There's several videos there of people getting baptized. We watched some of these. We even watched a video clip of Jesus getting baptized. Jaycee enjoyed the videos, and I explained what was happening as we watched them.

Elijah said, "Jaycee, this looks scary."  He didn't help my cause!

 

6. The final step was to practice in water. I wasn't too worried about this step because Jaycee loves swimming and water. But, I wanted her to practice sitting in the bathtub filled with water and leaning back. I never took her head completely under the water. I did dunk her enough to get her hair wet but I didn't want to scare her by taking her nose and mouth underwater. I didn't feel that part was important since she just had to have that part done officially once. She tolerated the bathtub practice just fine. In fact, she liked doing it. She would gesture for me to baptize her again.

 

So you might be wondering, how did Jaycee do after all that preparation?

 

 

Just fine!  She did it with no problems! She was a pro!

Sunday, October 19th was a day to celebrate!!

 

What Jaycee Brings Out

Over the years, I have found that Jaycee brings out the best and the worst in people. With children, there are immediately some who respond to her with smug looks, rudeness, and intolerance. Maybe they use mean language with her and maybe they just ignore her. These children don't know how to respond to a nonverbal child who looks a little different and does things a little different. Perhaps, these children are stuck up. Maybe they have never been around someone with a disability. Maybe they don't understand why she is like she is and she confuses them. For whatever reason, Jaycee can bring out the worst behavior in some children.

Then there are the children who are drawn to Jaycee out of love and care. They choose to sit by Jaycee, hold her hand, or give her hugs. They ask questions about how she communicates and what her favorite things are. They see her as a person. At church, these children have requested prayer for her so that she will have the ability to speak. Perhaps these children have a family member with a disability. Perhaps, they just have an innate ability to take an interest in people that some would ignore. Maybe, their parents have spent time talking to them about children who are different. Whatever the reason, Jaycee brings out the best in these children.

At Bible school last week, there were a few girls who took an interest in Jaycee. They offered to feed Jaycee her cupcake, even though she was capable of feeding herself. They took Jaycee to the bathroom for me and escorted her around the church. They wanted to be on her team for the games and offered their help to her so that she could participate. These girls asked me where she went to school, what signs she knew, and other questions about her life. It was wonderful to observe children giving Jaycee friendship and love that she desperately craves. She signed "friend" every night when they left church and cried.

I don't know what makes some children react the way they do to Jaycee. I try very hard to not look down upon the children who mistreat Jaycee. After all, I was never the child who tried to befriend a child with special needs. I didn't know how to approach them or interact with them. I wasn't mean but I didn't try to be nice. So instead of focusing on the children who don't make an effort with Jaycee, I try to focus on the ones who do. I am thankful that she has peers who want to engage with her. I admire these children. I see the gentle spirit they have inside of them. It is a gift from God.

Jaycee (girl in glasses in the center) praying at Bible school with her peers.