Article about Special Needs

August 28th, 2014

This is an article I wrote after our Joni and Friends Retreat in Murrietta, California this summer.

Who Will Push Me?

“I do wonder about the future. Zach is our only child. What happens to him when we’re old? What happens to us? Who will take care of him if we die?”

I was sitting in a circle of moms at a Joni and Friends Family Retreat. Founded by Joni Eareckson Tada, the retreats serve families who are living with a disability. I had been invited to the one in Murrietta, CA to provide a concert and women’s event during the week, and had brought my family with me. The woman speaking had a 15 year old son with cerebral palsy. He has very little use of his hands and arms and is in a wheelchair. He’s also a charmer who made friends with my 15 year old daughter and called her “Juliet”.

Another mom spoke. “I feel alone so often. It’s such a blessing to sit here and know there are other parents dealing with the things we are experiencing. But we have no community at home. And since our last church didn’t work out either, my husband is discouraged about trying another one.” Her daughter, Sarah, was autistic and they’d been informed by two churches that their presence was “too disruptive” to other church goers.

It’s a hard place to be. When my son was really suffering before his diagnosis, and then afterward with all the fear and therapy and unknowns, I remember being profoundly lonely, thinking no one else had a child like mine. I remember the constant worry about his future and about ours.

But there wasn’t just fear here. There was so much love and strength and fun! These parents had learned a new definition of love and sacrifice and patience, and the families were amazing. The night of my concert, I invited anyone who wanted to dance to come down to the front, and that building was literally rocking! We had wheelchair dancing and practically a mosh pit of jumping and dancing and praising God. It was the most fun I’d had in a long time, and I wished more people could see how much these families had to share.

When I look back on that week and think about all my friends back home who are parenting special needs children, I realized something in a new way. These families have so much to give, but they often aren’t allowed to. And these families are fragile and need the Church, and yet they often feel there is When you realize that you are the only one who understands your child’s medically fragile situation, suddenly there is terror when thinking about an accident or illness. Your situation has upped the ante.

A friend of mine died unexpectedly and tragically a couple of weeks ago. Everyone’s first thought was the shock and sadness of it for us and her family, but everyone’s second thought was, “Oh my goodness, what will happen to her son?” He has profound disabilities, and without his mom, his life is suddenly much less certain.

This is an area where the Church needs to step up. We are usually amazing in a situation of crisis. When someone has an accident or goes to the hospital or gets cancer, we go into Church mode. We bring meals, we run in 5K’s to raise money, we watch kids, we take laundry home. But when the situation is long term or uncomfortable, we don’t do as well. If a family member’s disability is distracting to the church service, the family may not feel welcome. If the needs of the family are going to last for 10, 20, or even 50 years, it seems like a lot of trouble, or we just forget what they are going through every day.

The Sunday after the Family Retreat, I was presenting at a church in Pasadena. That church also happens to be the home church of several of the families who were at retreat, including Zach’s. It has a major ministry to families with disability. They made inclusion a part of their mission. They have dedicated Sunday School classes for children with autism and even a sensory room in their children’s wing. They have a section in their auditorium reserved for families with disability, which means the families connect and have the support of other parents who understand the challenges. It also means that behaviors or differences are understood by the congregation. There’s even a specific spot for Zach’s wheelchair and service dog.

That is a big church, and I know that many smaller churches are struggling to know how to serve this population, but it is possible. The easiest way to know how to help is to ask the family. We have found people to be very open about what their kids need and about what would help them if people would just ask. And I have seen over and over that churches who intentionally step into this space will attract the families who need them. Over five percent of school-aged children in the US are living with a disability. This is not a small population, and they need the Church! Jesus told us to serve the least of these. He would not have turned away when it wasn’t easy or convenient to do so.

Zach’s mom told me that he had recently asked her who would push him in heaven. He’d never known anything but his wheelchair, so it hadn’t occurred to him that he wouldn’t need one. Praise God that Zach won’t need anyone to push him in heaven! But while he is here on earth, his parents are blessed to know that there are others beside themselves who are willing. Other families need to know that too.

Jennifer Shaw is a Telly Award winning speaker, author, singer, songwriter, and five-time Billboard Top 40 artist. Her ministry has been featured by Focus on the Family, Insight for Living, FamilyLife Today, Autism Speaks, Joni and Friends, and many more. Her new book, “Life Not Typical: How Special Needs Parenting Changed My Faith and My Song,” has brought national attention to the issue of Sensory Processing Disorder.

Guest Worship and the ALS Ice Bucket Challenge!!

August 19th, 2014
Back for guest worship at Karl Road Baptist in Columbus

Back for guest worship at Karl Road Baptist in Columbus

Last weekend, I went back to Karl Road Baptist Church here in Columbus to guest lead their worship services while their music director, Karen, was on vacation. She’s a friend of mine, so it’s fun to be able to help her out, but the more time I spend at this church, the more impressed I am. They have such a vision for ministry right to their own neighborhood and to the city!

And, in case you’ve been under a rock and haven’t noticed, the ALS Ice Bucket Challenge is sweeping the nation! My dad, Dave Chilcoat, died from ALS almost exactly 8 years ago, so needless to say our family has been dramatically impacted by this terrible disease. So many people dedicated their challenge to my dad, and it has been so sweet! We really appreciate it more than we can say, and are just so excited to see this disease get some awareness and some funding! They still don’t even know what causes it, let alone how to cure it, and we don’t want another family to go through what we went through. We had so many people challenge us that our whole family just did it all together. If you want to see the video, you’ll find it on my facebook page.

Worship Service and Concert in Michigan

August 4th, 2014
Morning services at Tyrone Covenant Presbyterian in Fenton, MI

Morning services at Tyrone Covenant Presbyterian in Fenton, MI

We’ve been home about a week from our three week trip, so of course, we need to go somewhere again! :) Seriously, my kids spend some time every summer with their grandparents, and this past week was the only one that worked for everyone’s schedule. We sent the kids up a couple of days ago, and then Nathan and I went and visited his brother and sister-in-law and their kids in Fenton, Michigan while his parents brought our kids down to us and his other brother brought his family over too. On Sunday, I did the worship services in the morning at Tyrone Covenant Presbyterian, and then a concert there later that night. I’ve been with them before, and it’s just such a sweet, solid congregation! Loved seeing them all again and getting to be with so much of the Shaw clan!

Our Wild West Tour, Pt. 2

July 27th, 2014
Special needs moms' brunch at First Evangelical Free in Fullerton, CA

Special needs moms’ brunch at First Evangelical Free in Fullerton, CA

First time for our kids to touch the Pacific!

First time for our kids to touch the Pacific!

Presenting on the worship services at PazNaz

Presenting on the worship services at PazNaz

The awesome "sensory" Sunday School room for special needs kids at PazNaz

The awesome “sensory” Sunday School room for special needs kids at PazNaz

The floating chapel in the heart of Joni and Friends International Headquarters

The floating chapel in the heart of Joni and Friends International Headquarters

A mama bear encouraging her baby up on a log in Sequoia National Park

A mama bear encouraging her baby up on a log in Sequoia National Park

One of the amazing sequoias - this wasn't even one of the big ones that got a name!!

One of the amazing sequoias – this wasn’t even one of the big ones that got a name!!

Temperature on the dashboard of our car driving through the Mojave Desert at night

Temperature on the dashboard of our car driving through the Mojave Desert at night

Well, we are home, and what a wild trip that was! So, so happy we went, and so, so glad to sit still for a bit.

After the Joni and Friends Family Retreat in Murrietta, CA, we drove up to Fullerton near Los Angeles and I did a mom’s brunch at First Evangelical Free Church for mom’s of special needs children. Connie Hutchinson, the director of special needs ministry at the church, had read my book about a year ago and contacted me to see if we’d ever be out that way to do a ministry event with her moms. God is so good, and we had just been booked for the Joni and Friends Retreat when Connie called and they are only an hour apart – God is always working things together!

They do an amazing ministry there to the disabled, and we had over 100 moms attend. It was a wonderful time, and included a performance by a group of disabled adults at the church which was so special! I loved getting to spend time with Connie and her husband and daughter, and I sure hope we get to see them next time we’re in California!

After the brunch we went out to the beach. Even though it was too cold to want to swim, our kids had never touched the Pacific Ocean so we needed to check that off! I told them they are the only American kids I know who touched the Indian Ocean before they got to the Pacific! Then we drove up to Pasadena to get ready for the worship services the next day.

On Sunday I got to be at the First Church of the Nazarene of Pasadena, affectionately called PazNaz by the congregation. They’ve also got a spectacular special needs ministry headed by Julie Keith, but what made them really special to us was that a number of the families at the church, Julie’s included, had been at the Joni and Friends Retreat with us the week before. This was wonderful for us because there were several families we’d had a hard time saying goodbye to, and we got to see them again that morning! I sang on all the morning services and Julie gave us a tour of some of their incredible kids wing and special needs programs, and then we got to go out to lunch with several of the families from Retreat. What a blessing! It made it harder to say goodbye, but we were so grateful for the time!

After that we drove south again to Disneyland. Come one, you knew I couldn’t bring my family our for their first visit to Southern California and miss that, didn’t you? We have visited Disney World in Florida a number of times over the years – we love it and we have family down there – but I had to show them the California version. We had a great time, and if you’re ever there, do not miss the new Radiator Springs Racers – what a cute ride!!

After two lovely days there we headed up north. We visited a friend we’d met while in the Dominican Republic for lunch and it was so good to catch up with her and her family! Afterward we had the amazing privilege to visit the national headquarters for Joni and Friends in Augora Hills, CA. They gave us a tour and while we were there I was invited to sing in the famous “floating chapel” that is the heart of the building. The acoustics are absolutely stunning in there, and apparently if you sing in there the whole building hears it. What a privilege! Joni is a childhood hero of mine, and she sings there almost every day – what a fun moment for me.

The last stop of our Western adventure was Sequoia National Park. We got in late that night and collapsed. The next morning we got in and within 15 minutes we saw our first black bear! We were hoping to see one, although I was hoping to be in my car, and this one was right behind us, but we couldn’t believe it! We did a lot of hiking and were just again overwhelmed by God’s creation! By the end of the day we had seen 3 different groups of bears for a total of 6, and if I didn’t have the pictures, I wouldn’t believe it either. We had several park service people tell us that was unheard of, and one couple we met who’d been hiking there for 2 weeks each summer for the past 28 years said 6 bears in a day was their record!

Driving back to Vegas through the Mojave Desert was crazy – 104 degrees at night in the dark. And we drove the kids through the lights when we got there and took a little time to explore the more kid friendly aspects in the morning before our flight. I have to say, though, after all the splendor of God’s creation we’d seen that week, Vegas didn’t have much to offer, and we were all happy that we’d spent our time elsewhere.

It’s good to be home, and I’m also sad it’s over. So many wonderful people, so much fun ministry, so many unbelievable sights from God alone, and such great memories for our family!

Our Wild West Tour, Pt. 1

July 18th, 2014
How you know you're in Vegas - this was in the airport.  The airport has a gun store?!?!

How you know you’re in Vegas – this was in the airport. The airport has a gun store?!?!

View of the Colorado River from the top of the Hoover Dam

View of the Colorado River from the top of the Hoover Dam

Riding in Bryce Canyon

Riding in Bryce Canyon

Beautiful view from the Emerald Loop in Zion National Park

Beautiful view from the Emerald Loop in Zion National Park

Some of the otherworldly rocks at Zion National Park

Some of the otherworldly rocks at Zion National Park

One of the amazing views of the Grand Canyon

One of the amazing views of the Grand Canyon

Outreach event at Prescott Christian Church in AZ

Outreach event at Prescott Christian Church in AZ

With the Burtons and Armstrongs, coordinators of the event at Prescott Christian Church

With the Burtons and Armstrongs, coordinators of the event at Prescott Christian Church

Beautiful Calvary Chapel Bible College where the Joni and Friends Family Retreat was held

Beautiful Calvary Chapel Bible College where the Joni and Friends Family Retreat was held

People dancing during the family concert at the Joni and Friends Family Retreat

People dancing during the family concert at the Joni and Friends Family Retreat

Rinnah (Juliet) with her friend Alex at Joni and Friends Family Retreat

Rinnah (Juliet) with her friend Alex at Joni and Friends Family Retreat

We’ve been planning this tour so long, it’s hard to believe that I’m sitting here over half-way through, trying to put into words all that we’ve already experienced! Our whole family is out in the Western US for about 3 weeks. I was invited for several ministry events and we decided to combine it with family vacation as well so we could show the kids some of the national parks. Who am I kidding?! I haven’t seen most of the national parks either, so I was more excited than they were!

We flew out from Columbus and landed in Las Vegas, NV. It was like landing on another planet for my kids. We’ve been to rainforests and jungles and African plains and snow filled forests with them, but they’d never seen the desert, and it was like landing on Mars. They kept commenting about how there was no color and how hot it was (103 that morning) and I told them that that was just their Ohio eyes which always see green – if they gave it a few hours, they would start to see all the colors in the desert and they did. I never cease to marvel at the absolute wonder of the creativity of God! It’s a constant theme in my head as I’m traveling – what an artist!!

We immediately drove out to tour the Hoover Dam which is a pretty incredible marvel of engineering. It was so unbelievably hot, but we all had a good time, and after getting some lunch, we drove several hours north to Utah. We’d come a few days ahead of my first ministry event in order to have some time hiking. We drove through Zion National Park on our way to our cabin, and it was truly jaw dropping. Couldn’t wait to get back there!

The next morning we rode horses through Bryce Canyon. This was absolutely spectacular and something I’ve always wanted to do! I had heard there may be steep drops, but I had no idea how insane some of that would feel. Add to that the fact that Toby had never been on a horse and that all the horses seemed to really like the edge of the cliffs, and there were really quite a few times I had to use Lamaze breathing to not have a panic attack! Still, (considering we all lived!) I am so, so happy we did it – the experience of a lifetime really. Everyone loved it, and it’s so spectacular in there that you just can’t help praising God! If we needed a reminder that He is bigger than anything we’ve ever thought of, we had it that day.

The next day we went down and hiked in Zion National Park. I so wished we’d had a couple more days here! What an amazing place. It was so varied and every hike was something new. Our biggest disappointment was that the day we were there there were flash flood warnings, so we weren’t allowed to hike The Narrows which is a trail where you actually hike up a river bed as the canyon slowly closes in around you – you can imagine why that would be a bad place to be in a flash flood. We did the bottom part of it and I almost wish we hadn’t because it made me want to do the rest! If we’re ever back anywhere near there, you know what we’ll be doing!

After that we drove down for my first event in Prescott, AZ. It sounds stupid to say that we saw the Grand Canyon on our way there, but we did. :) We stopped and hiked just a bit – only had about 3 hours there – but I am glad we saw it at least. It’s so huge, you really can’t even get your mind around it.

I wasn’t sure what I was expecting from Prescott, but it wasn’t at all what I was picturing. It’s beautiful out there with mountains and green right next to desert and rock formations that look like Mars again. We stayed with friends of friends, the Armstrongs, who, by the end of our trip were just friends. I did an outreach event on Saturday that was so much fun, and the best part for me was working with Melva, the coordinator, and the people at the church! They made us feel so at home, and even had us out for a barbecue afterward. I tell my kids all the time that doing ministry the way we do really gives us a little glimpse of what heaven will be like, because we really meet the most amazing people! And, in a fun this-doesn’t-happen-everyday moment, at the end of the concert, a woman who lives at a Christian camp up the hill invited us all up to do some ziplining, and so we did. Thanks, Sandra!!

The next day we went to church with the Armstrongs and then did some sightseeing in Prescott, especially enjoying the Native American art exhibition going on. Then, Monday we headed out to California and stopped on our way to see Joshua Tree National Forest. The Joshua trees were beautiful, but that is a seriously inhospitable land! Wow, it’s harsh.

We made it to Murrietta, CA late that night and checked in at Calvary Chapel Bible College where the Joni and Friends Family Retreat was being held. Founded by Joni Eareckson Tada who was paralyzed in her teens in a diving accident, Joni and Friends is an international ministry serving people with disabilities. I’d been asked to do some ministry at the camp that week and our whole family was able to experience it.

What a blessing we’ve had this week! This family camp experience is almost impossible to describe in just a few paragraphs. We’ve been so blessed to work with the Joni and Friends organizers here – Cheryl and Dave and Pam have been absolutely wonderful! We were assigned an STM (short term missionary) named KT who was such an impressive and amazing young woman. Every family gets an STM to help with any disabled person or child under the age of 9. KT was still in high school, but she’d had such a challenging life already and still approached us with such a sweet servant’s heart – we felt like we’d gained another daughter.

We have met so many incredible families who are dealing with very difficult situations, but this is a time for them to relax and have fun as families, and it was so great to see. Our daughter, Rinnah, made one really good friend named Alex who has cerebral palsy and they were so cute together. He kept calling her “his Juliet”, and we loved getting to know his parents. It was amazing to hear all the stories here.

On the opening night, I presented some music as an opening, and while we were here I also did an event just for the moms which was lovely and then a whole camp concert. That night was just rocking! Everyone was singing along and we had wheelchair dancing and nearly a mosh-pit up front! How fun! Truly an amazing night. And then tonight there was a talent show, and to see all these beautiful people get up to share what God has given them was so touching. Two of them even used my songs from the week – it made me teary!

And now we’re looking at leaving early in the morning. We can’t stay for the final breakfast because I have another event up near Los Angeles, but I know we will be talking to many of these people again. We came to serve, but we gained so much more than I feel we gave, and that is often the case in the family of God!

Guest Worship

June 30th, 2014
Guest leading worship at Karl Rd. Baptist Church

Guest leading worship at Karl Rd. Baptist Church

Yesterday I got to guest lead worship at Karl Rd. Baptist Church here in Columbus. This was especially fun for me because I’ve attended Bible Study Fellowship here for eons, and it was great to have a chance to help them out for a change. This church has a tremendous ministry right in their neighborhood and to the 600+ women and hundreds of children that come with them every week. It was great to be with them, and I’m happy to be heading back in August too!

Adventure Week

June 22nd, 2014
My daughter in the VBS play.

My daughter in the VBS play.

This past week was “Adventure Week” or VBS at our old church. I worked there for over 12 years, and in that time I wrote several plays and music for the week. Even though I’ve left the position there as music director, it’s been so fun that they’ve invited me back to help with the play, and my older daughter, Rinnah, has had a part in it last year and this. Seriously, what a joy to see your child do a play you wrote in order that younger kids might meet the Lord!

This year we were at a school training us all to be God’s sidekicks – He is our superhero! Here’s a picture of my daughter as “Zelda” with her on-stage brother “Dexter” played by Kody. They had so much fun. And over 40 kids started a new relationship with God that week. What could better?

“Why Has My Congregation Stopped Singing?” published

May 23rd, 2014

The American Church Magazine just published an article I wrote called “Why Has My Congregation Stopped Singing?” It’s a practical article about things churches can do to increase participation in worship. I visit so many churches every year, and I see the same things over and over again – I just felt compelled to write it. Now that I have, the response has been tremendous! It was a real struggle for me to keep it to the length the magazine asked for. Maybe I should make it a book?

You can find it here – let me know what you think and what your church does well or could improve in the comments!

Maranatha Spring Tea

May 18th, 2014
At Maranatha Baptist's Spring Tea

At Maranatha Baptist’s Spring Tea

Last night I got to do the speaking and music for Maranatha Baptist’s annual Spring Tea. This was just a beautiful event. It’s held in a very standard gym, but it was amazing how the women transformed it, and they had worked so hard to make it lovely for all the women coming! This is an outreach event they do every year for their family, friends, and co-workers, and we heard afterward that several women started a relationship with the Lord that night. There is nothing better you could ever tell me! They treated me so kindly, it was just a pleasure to be with them. Thanks for having me!

Just bragging a little…

May 12th, 2014
Rachel finishing a round.  She's in the center with the bun.

Rachel finishing a round. She’s in the center with the bun.

Allow me a mom moment here. All of my kids do interesting and sometimes unusual things, and this week I got to take our younger daughter, Rachel, to compete in the nationals for archery. She qualified last year too and got eighth in the country! Since my only experience with archery was at summer camp as a kid with arrows shaped more like boomerangs, I am lucky to still be alive. We have no idea where she got this talent.

Nationals were held in Louisville, KY and we took my mom along too – three generations together for girl time. It’s a really interesting thing to do, actually. There are thousands of archers from all over the country and they are competing hundreds at a time. Rachel has moved up an age division, so this year she was competing against her grade and also the two above it. She had an arrow go bad in the second to the last round, but she still tied her personal best competition score and took 22nd. We were so proud of her! I don’t know how she does it, but she stays cool as a cucumber.

Thanks for letting me brag a bit. Hopefully I’ll get to do it again next year. :)