Monday, January 27, 2020

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!

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Monday, January 6, 2020

2019: The Year I Prayed Differently

Happy 2020!

Like many people, I tend to reflect about where I've been and where I am going when a new year begins. I usually make a mental to do list for the upcoming year that seems attainable. In the past, some of items on my list were: take a vacation, deep clean my house, grow closer to God, make an effort to reach out to others, etc. 

Last year, I felt compelled to do something different. Rather than having a task to complete, I had a "word" to focus on. "Ask" became my focal point in 2019. 

You may feel like 'ask' is a strange selection for a word, but I knew exactly what I was being challenged to do when I got the idea through prayer. First, you have to understand what happened the previous year that preempted everything. 

In 2018, Jaycee, my daughter with Down syndrome and other medical conditions, was in the hospital five times for respiratory issues. The hospital admissions were hard and the recovery at home long. It was a draining year. It wasn't the first year that she was hospitalized so often, which only exacerbated the feelings of stress and anxiousness over her health. 

During 2018, my prayers for Jaycee were mainly, "God, please keep Jaycee from getting sick." Sicknesses like colds or influenza were major threats to Jaycee's lungs. If she could keep the germs at bay, then she would be fine. My prayers reflected that line of thinking. If God could protect her from getting the germs, all would be fine. Once Jaycee became sick, I felt there was little hope that her lungs could fight anything off. Caring for someone with chronic health conditions can lead to that type of thinking, especially when you have consecutive months of health trials. 

My faith was only strong when Jaycee was healthy. I had seen Jaycee in respiratory distress too many times over the span of a decade. It made me fearful and shook any sliver of faith I had when she was ill. We had exhausted all the pulmonary tests and treatments (or so we were told by two hospitals at the time). 

When Jaycee was symptomatic, I spent little time in prayer. You may think that odd, but I was busy. I was managing multiple medications and treatments, calling doctors, and trying to stay on top of her care. I didn't ask God for much help during these trials; I simply lacked the faith or the energy. 

On January 1st, 2019, I prayed something different. I asked God to make Jaycee healthy (as opposed to not getting sick). I must admit, I had trouble even saying the words at first. My thoughts told me it was a crazy thing to even say. It seemed like it would be an absolute miracle for Jaycee to be healthy- without sickness- without hospitals. I prayed her lungs would be healthy. I wrote out a little page and stuck in on my bathroom vanity as a way to keep focused. 

On January 25, 2019, we rushed Jaycee to an emergency room as she suddenly turned blue. Jaycee was discharged after a few days, a relatively short amount of time in the hospital for her. We continued to intensely care for her at home. However, a couple of days later, Jaycee needed to be rushed to the ER again. She had developed pneumonia from RSV, which wasn't caught at the first hospital. (Yes, 12 year olds with crummy lungs can end up with serious repercussions from RSV too!)

Did I want to stop asking for her to be in good health? Yes and no. I knew I would face opposition by praying this way simply by knowing Jaycee's health history. I wish I would have had at least one full month to pray peacefully and develop some faith before the obstacles. However, I knew I needed to go forward. I knew I needed to stretch my faith and speak life over her lungs, now more than ever. I made an effort to pray for her when she was sick instead of going into full "mommy-nurse" mode.

RSV has a long recovery time. By mid-February, Jaycee had more sick days than healthy. Yet, I chose to keep asking on Jaycee's behalf. The more I said it, the easier it became. It also helped me develop faith and look long term for her rather than the current crisis.

The year of asking and having faith for Jaycee started out rocky. She would be hospitalized once again in May. There were a few other illnesses too when Jaycee endured several days of interventions at home. There was no magical end to her health problems. But, a few things happened in 2019 that were game-changers. 

I asked one of Jaycee's specialists about enrolling her in outpatient physical therapy in the spring after she fully recovered from RSV. Low muscle tone is part of Down syndrome and every illness seemed to make Jaycee weaker. I didn't realize just how poor Jaycee's endurance had gotten because it happened slowly over time. I became accustomed to using the wheelchair for most public outings. I accepted the fact that she couldn't lift her legs for more than 30 seconds to shave. After a few weeks of therapy, there were noticeable changes in her. It didn't change her lung status, but it made a huge difference in other aspects of her life.  

In 2019, we made three trips to Mayo Clinic where Jaycee's lungs were extensively tested by them for the first time. As a result, new treatments were added as well as new diagnoses. In some ways, I struggled after our second Mayo Clinic trip in late July. Knowing exactly what was wrong with Jaycee's lungs was frightening. She was prone to pneumonia and we knew why. The best thing for Jaycee's lungs would be for her to have long stretches of health to give them time to heal. It seemed like an impossible task. I was hopeful for the new treatments but also fearful from the information we learned. I continued to pray for her health, but it was harder knowing the condition her lungs. 

In September, I listened during the pre-service prayer to my pastor who challenged us to pray for supernatural miracles. He asked, "Are we praying baby prayers that require no faith or miraculous prayers that only God could answer?" As he spoke, the worship team sang, "Great are You Lord." The lyrics to this song often run through my head during a health crisis: It's your breath in our lungs, so we pour out our praise. The combination of these things happening were a sign to me. Don't fear the future. Continue to ask for Jaycee's health. Step out, be vulnerable, and ask. 

Much can happen in the course of a year. Some things are easy and good, and some are hard. These events can sway our emotions and our prayer life if we allow them. Other events happen that seem small or a shot in the dark. However, they turn out to be exactly what needed to happen. Opposition may come in life but God can also raise people up to provide encouragement if we are willing and available to receive it. Situations in our lives can change. That's why we have to decide how we are going to believe. Our faith shouldn't be changed by events. Our events are meant to be changed by our faith. 

In 2019, I made a choice to ask God for health for Jaycee. I really believe that by changing my prayers I have been able to see a healthier version Jaycee. The 8 weeks of physical therapy helped Jaycee's endurance and activity level tremendously. Deciding to go to Mayo Clinic provided us new insight into Jaycee's pulmonary problems and better ways of treating them. We ended 2019 on a 6 month no hospital admissions streak. Six months! 

Last night, I said a prayer for Jaycee before kissing her good-night. Want to guess what I prayed for her?

Friends, what do you need to start asking God for again?

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