As I mentioned in the previous post in this series, God has been nudging me about beginning a special needs ministry at my local church. After all, the new building is completely handicapped accessible, so we will soon have the facilities for such a ministry. Our town is full of families who could benefit from it. All that’s missing is someone to spearhead the efforts, kinda get things going.

I’m Too Busy

That would be me.

The problem is I’m not very comfortable with the idea. In fact, I don’t like it at all. See, I’m a busy woman. I have a new book contract, with lots of research to complete and interviews to do, and a deadline. I have a full schedule of speaking engagements. All this advocating around the country on behalf of parents whose children have special needs takes so much time.

I’m No Expert

But, how can I call myself an advocate for families around the country if I refuse to advocate on behalf of families in my town? The more I think about it, the more hypocritical I feel. It’s painful, the kind of nudge I can’t ignore.

So here’s the deal. Even though, I’m reading up on the subject and have interviewed the coordinator of a stellar special needs ministry at Valley Evangelical Free Church in West Des Moines, Iowa, I’m not sure how to begin. Maybe some of you can help.

Calling All Experts and Wannabees

If you’re a lurker with experience starting a special needs ministry from scratch, your expertise is needed. Please leave a comment or send an email about books, programs, resources, or people who assisted you. Tell us your ministry’s story so we can follow your example.

If you’re a wannabe like me, leave a comment or question about what you want to know about starting a ministry. Maybe someone out there will have an answer.

I’ll Keep You Posted About the Pain

Since I’m asking you to get involved on this subject, I promise to keep you posted about my progress, too. We probably won’t move into our new facility until September, so until then it’s research and waiting expectantly for your ideas. Please, please, please start sharing them. I want to stop feeling like a hypocrite real soon!

Painfully yours,
Jolene

After almost 10 years of meeting in a high school for Sunday morning worship my church family, Grace Community Church, will soon move into a new building. We’re excited about how God will use us and the new building to reach out to people in our small town.

Uneasy and Uncomfortable

Lately, God has been nudging me about starting a special needs ministry at our church. So I wrote a column about the idea for our June newsletter. You can read it below.

And He answered and said to them,
“Go and report to John what you have seen and heard:
the blind receive sight, the lame walk, the lepers are cleansed,
the deaf hear, the dead are raised up,
the poor have the gospel preached to them.”
Luke 7: 22

Lately, God has been pushing me in a direction that is neither comfortable or easy. The closer our building comes to completion, the harder He pushes. When I ask Him to stop, He keeps pushing. When I ignore Him, He gets in my face.

The shoving match began when Hiram and I, curious about the construction progress, walked through our church building awhile back. The building’s handicapped accessibility – no steps, wide halls and doorways, handicapped bathroom stalls – pleased me since I remember how hard Mom worked to get Dad and his wheelchair into my childhood church. That’s when God started pushing. Could our church reach out to disabled people in Boone?

About the same time, I spoke at a church with a bang-up ministry for families of kids with special needs. I interviewed the program director, thinking her expertise would be a valuable addition to a chapter of my new book. The more she shared about their ministry, the more God pushed. I asked Him to stop, but He pushed harder. Families in Boone could benefit from such an outreach at Grace.

Next, I interviewed Dr. Jeff McNair, a professor of special education who also teaches a Sunday school class for disabled adults. I began reading his book, The Church and Disability, which says things like this. “Rarely are children with disabilities included in Sunday school to the degree such children are present in the community. In interactions with Christian kids at church, I have asked them where they have had experience with children with disabilities, and most often they will say in their class at public school.”

When I tried to ignore what God was saying, He got in my face, using McNair’s words again. “All levels of Christian education are wrong…because they overlook some of the most needy, the poorest, the most disenfranchised people in the world. How could any group that claims to be Christian be so blind as to miss this group? To miss such a group in the light of the gospels and the example of Christ is so wrong.” Could Grace Community Church help right that wrong?

Our church could, but do we want to? Right now, I want  Him to let us rest. After 9 years of unloading a trailer every Sunday and doing Sunday school in hallways, don’t we deserve some time to rest instead of reaching out to people who require a great investment of time, energy and discomfort?

But I suspect He didn’t provide the building of this church so we could rest. And I suspect He’ll keep pushing us until the most compromised of Boone’s citizens have the gospel preached to them. After all, our new church building is equipped to welcome the blind, the deaf, the lame, and intellectually disabled. But are we?

Oh God who provided a building, would You please equip our hearts?

Come Back Next Time

If you’re interested in starting a special needs ministry at your church or have already done so, please come back for the next post in this series. Maybe we can put our heads together and figure out how to begin.

Uneasy and uncomfortable,
Jolene

The first post in this series introduced you to Deborah Arrona, her husband Salvador, and their daughter Aria. If you haven’t read Part 1 of the series, the background information it provides will help this post make more sense.

Salvador and Deborah were only 20 when their premature baby arrived, and they’re only 26 now. But they have valuable wisdom to share. While everything can’t be shared here, (though I hope to include more of their story in Different Dream Parenting, my new book which is in the works) these comments give you a flavor of how the Arronas are choosing to live and grow through the life of their child with special needs.

What Are Your Greatest Sources of Support?

Deborah answered that question immediately. “My husband is the number one best. He’s a positive guy. If he sees the negative, be doesn’t mention it. If he grieves, it’s private. He does well with Aria and always encourages me. He thinks of another way to deal with problems. he helped me with grieving, and showed me it’s okay to feel how I do. He doesn’t judge me. I don’t have to ask for help. He just does it because he’s her dad. He helps me because I’m Aria’s mom.”

He’s as amazing as his wife, don’t you think?

Describe How You Started a Special Needs Ministry at Your Church

Elim Church, the Arrona’s home church even before Aria was born, has also been a source of support. They were always eager for updates about her progress. When Aria was well enough to attend church, she stayed in the nursery while her parents went to worship and Sunday school.

More parents of kids with special needs started attending the church, more than the nursery could handle. Suddenly, there was a need for a ministry for kids like Aria. Church leaders approached Deborah and asked if she would help get things going. Well, it just so happened that a few years earlier, a church in the area held a conference about how to start special needs ministries. Deborah attended, just in case the information would be needed some day. She shared the information with her church leaders. But still she said, “I thought the program would be for me, not by me.”

God had other plans. Deborah was asked to lead the program, and she said she would pray and consider it. No one else volunteered. More families of kids with special needs started coming. More issues related to their needs arose. Suddenly, Deborah knew she could do the job by asking, “What would I want for my child?”

She realized she knew how to answer that question and volunteered to lead it. Her husband said he would help. Each week, they make sure they aren’t just babysitting the kids from 11 families who attend. “We have a time for the kids to praise and worship, either with the other children or in a quieter setting.”

What Would I Want for My Child?

Deborah Arrona is an amazing woman. Because she asked a good question – What would I want for my child? - God showed her what to do and is using her to help many other kids with a wide variety of special needs. Their church is growing because she and her husband saw a need and stepped forward to meet it.

What question is God waiting for me to ask? What question is he waiting to hear from your lips?

Jolene

I’ve said it before, and I’ll say it again. Meeting parents of kids with special needs and hearing their stories is the best part of what I do. Recently, I met Deborah Arrona via the Coffee Klatch, a Twitter community for parents of kids with a wide variety of special needs. Later, she agreed to be interviewed, and her testimony of life with a child who has significant special needs impressed me deeply.

Baby Aria Comes Early

The Arrona’s adventure began in December of 2003 when Deborah was 23 weeks pregnant. Her blood pressure was slightly elevated, and she was spilling protein in her urine. After a hospital stay and a week on medication, her blood pressure improved. But she was still spilling protein, so she went back to the hospital. Deborah’s preeclampsia worsened, and the baby had to be delivered early by C section, at 25 weeks. Aria was born on December 31, 2003 and weighed in at only 1 pound, 4 ounces. She was 11 inches long.

110 Days in NICU

Deborah and her husband Salvador didn’t see their daughter for 5 long days. When they finally did, she was covered with plastic sheets as the medical staff tried to mimic a mother’s womb. Special coverings hid her eyes and ears. Much of what happened during Aria’s early days is still foggy for Deborah. Complications were numerous, procedures constant, and surgeries were required. Deborah does remember that her daughter nearly died of pneumonia once. And they didn’t get to hold her until she was three months old. When Aria’s weight went over 5 pounds and she could to bottle-feed without oxygen, they were able to take her home. She’e been in NICU or 110 days, from December 31, 2003 until April 27, 2004.

Life with Aria

The NICU staff did all they could for Aria, but humans just can’t recreate the sheltering, nurturing environment of a womb. Leaving that environment so early left the little girl with some major special needs. Her vision is impaired, though she can see light and shadow. In 2005, at age 2, a feeding tube was surgically implanted because eating was so much work, she couldn’t get enough nutrition. Aria is confined to a wheelchair, though in physical therapy, she’s been learning to stand. At age 6, she communicates mostly through facial expression, though she babbles a great deal. Aria still wears a diaper, but her parents are working on toilet training. She attends a preschool program for children with disabilities. When she’s home, caring for her is a full time job.

So Young and So Wise

When asked what she’d learned from Aria’s condition, Deborah said, “I’ve learned to slow down and think about what I do and say…I try to get to know medical professionals as people so they will take better care of Aria. I present myself as a mom who’s serious about her care and who can help her. I plan carefully, think of variables first, and then do. I try to be over-prepared.”

Wow! What an example of a wise advocate for a child with special needs. Here’s the kicker, folks. Deborah is only 26 years old. She’s been advocating like this since Aria was born, when Deborah was 20!

How Did It Happen?

If you want to know how Deborah develop such wisdom, come back Wednesday for the second part of this series. In it, Deborah will tell about where they received support and what they are doing to give back. You won’t want to miss it.

Jolene

A little less than a month ago, Steve Siler’s first monthly song, Dignity, was posted at this website accompanied by a short devotional by Shelly Beach.

We Forgive You

This month, Steve’s new song, We Forgive You, reaches out to those struggling with remorse over irrevocable decisions from the past. He is looking for vocalists to help make the final recording. If you’re interested or know someone who is, leave a comment below, and I’ll send you the contact information.

Shelly Beach’s Devotional

Here’s what Shelly wrote to accompany Steve’s song.

The gift of memory is one of our greatest blessings, but it also carries a dark side. We’ve all experienced regret, when guilt and remorse sweep over us for decisions from the past. Voices of blame accuse us, and we can become paralyzed with guilt because we know our actions hurt those we love, and sometimes the consequences seem insurmountable.

Satan loves to chain us to our past. But God’s Word promises us we’re not trapped by our choices. Jesus extends His hands to us in compassion, and His voice calls us with the hope of freedom, forgiveness, and a future. “Therefore, there is now no condemnation for those who are in Christ Jesus . . .” (Romans 8:1) Jesus conquered even death for us. He sets all things right. His forgiveness frees us to live confidently in the here and now—embraced as children of hope in the arms of our loving Father.

To learn more about Steve’s ministry, go to www.musicforthesoul.org. For more information about Shelly’s books, go to www.shellybeachonline.com.

Jolene

The February 26th blog post at www.DifferentDream.com introduced you to Steve Siler’s ministry, Music for the Soul, and his website where you can learn about his efforts to reach people who are suffering for many different reasons.

What’s New with Steve Siler

Today, it gives me great pleasure to tell you about a new way Steve is using his musical gifts to comfort the brokenhearted. Each month, he plans to distribute an original song which addresses some facet of healing and recovery. You can listen to this month’s title by clicking on this link: Dignity

What’s New with Shelly Beach

Each month Shelly Beach, my good friend and the author of Precious Lord, Take My Hand and Hallie’s Heart, will write a short devotional to accompany the song. The first one is available below.

Dignity

This morning I glanced in the mirror before I headed out the door, only to discover I was wearing one brown and one black shoe. Not surprising, since I’d gotten dressed half asleep and I sometimes can’t tell you what day of the week it is before noon.

Mirrors reflect what we often don’t see. When it comes to our spiritual and emotional state of dress, God often gifts us with dignity reflected through the kindness, compassion, and love of others. Even their simple acts of grace illuminate the dignity God created in each of us.

Jesus mirrored God’s love and gave people a vision of their true image of themselves. We see these “mirror moments” in Jesus’ interactions with the woman caught in adultery (John 8:2-11) and with the dishonest tax-collector Zaccheus (Luke 19:1-10). The dignity Jesus reflected allowed others to see the beauty, purpose, and significance God created in them.

Our goal should be to serve as mirror-bearers in a dark world—reflecting hope and life in Jesus as we pour out God’s love.

If Steve’s song and Shelly’s devotion speak to your heart, you can leave a comment below and I will forward it to them. Or you can go to Steve’s website, Music for the Soul, or Shelly’s, Shelly Beach Online and email them directly.

Thanks, Steve and Shelly, for nourishing our souls,
Jolene

If you’re the parent of a child with special needs, you’ve come face to face with inexplicable suffering. Though my child, husband and I have come to a place of peace and acceptance in the midst of pain and suffering, it’s hard for me to put my belief in words.

Enter Tim Keller

However, this sermon by Tim Keller articulates the theology that helped me accept the suffering in our family. Keller is the pastor of Redeemer Presbyterian Church in New York City. Mark Driscoll, the hip and funky pastor of Mars Hill Church in Seattle, says Keller is “Yoda smart,” but don’t let his intelligence keep you from listening. He’s also thoughtful, logical and very conversational in tone.

Have a Listen

If you’re a note taker, grab a pencil and paper, then listen to Keller’s sermon, Your Plans, God’s Plans. Whether or not you agree totally with what he says, the sermon will get you thinking. Take a moment to leave a comment about what you thought of what Keller had to say. I’d love to hear from you.

Jolene

The previous posts in this series (Part 1, Part 2, Part 3) focused on how to pray for your child with special needs. In this final post in the series, we’ll explore ways parents can pray for themselves.

Pray for the Fruits of the Spirit

Remember the list of fruits of the Spirit and character traits listed in Part 1 of this series? You know, the ones to pray for your kids? Well, you can pray for God to multiply those same fruits and character traits in your own life. Your prayer could go something like this:

God, I don’t know how to find joy in my child’s illness. Please show me how to be joyful in the midst of trials. Put joy in my days and teach me to recognize it. Grant me a joyful spirit that will encourage and comfort my child.

You can also pray about your marriage, job, financial needs, health, and anything else. God loves it when you acknowledge your dependence upon him and come to him with your petitions.

Enlist a Prayer Team

One of the best things you can do is start a prayer team. Ask friends and family members if they would commit to praying for you and your child on a regular basis. Once a month, send an email of specific prayer requests for them to pray over. If creating the monthly prayer letter is too much for you, ask someone on the team to write it for you. You call once a month to share the requests, and your scribe can take it from there. The scribe can also print out the email and snail mail it to members of the prayer team who don’t have email.

After the first month, you can send praise reports about answered prayers along with the new prayer requests. You and your prayer team members will be encouraged as you see God answer your petitions.

Keep a Prayer Journal

Along the same lines, you might want to keep a prayer journal. You can list the things your praying about by the day or week and check them off as God gives his answers. Once again, answered prayers are a mighty encouragement and source of hope.

If you have other ideas about how to pray for yourself, please leave a comment. I’d love to hear from you.

Blessings and prayers,
Jolene Philo

In the previous posts in this series, I briefly described how I prayed scripture for Allen, my son, during his struggle with post-traumatic stress disorder (PTSD).

WebTV4Women Radio Interview with Linda Goldfarb

Instead of writing the whole story here, which would make this a ten part series, I encourage you to listen to Linda Goldfarb’s recent radio interview with me at WebTVforWomen.tv. (The idea of a radio interview at a TV website sounds a little weird, doesn’t it?) During the interview, Linda and I discussed Allen’s special needs in more detail. We also talked about how to pray scripture for our children. The two verses from II Timothy are quoted and their relationship to Allen’s situation is explained. So give it a listen, if you’re curious, and leave a comment if you like.

Life Dreams Channel

While you’re at WebTV4Women.tv, click on the “channels” button and then on the “Life Dreams” link. Once you’re there, you can view videos dealing with a variety of issues important to parents of kids with special needs. Again leave a comment about what you see as well as suggestions about future topics you’d like to see covered.

Thanks,
Jolene Philo

The first post in this series discussed general ways to pray for kids with special needs. As promised the second post provides specific ideas of how and what to pray.

How to Pray

Finding time to pray while caring for a child with special can be almost impossible. Nevertheless, God commands us to pray, and whatever he commands us to do, he also enables us to accomplish. With that provision in mind, here are a few suggestions about how to honor God’s command:

• Pray daily. If you can set aside even a few minutes to sit down and pray, great. But if your child’s care doesn’t allow for that, be creative. Maybe you can pray while doing a mindless, daily task like making the bed or washing dishes. One mom interviewed in  A Different Dream for My Child got a large print Bible so she could read and pray while pounding her daughter’s back, which was part of the little girl’s respiratory therapy regime.
• Start small. If you haven’t prayed on a daily basis for your child before now, set a small, achievable goal. Commit to praying five minutes a day for your child. Once you’re comfortable with that, increase the amount of time. In addition to praying for your child’s health, pray for caregivers and teachers, too.
• Start slow. Research shows it takes six weeks to form a new habit. So don’t add anything to your first small, daily goal until the six weeks are up.

What to Pray

You can pray for your child in many ways. Here are a few of my favorites:

• Each day of the week or month, ask God to develop a different character trait or fruit of the Spirit within your child. Ones that apply to children, no matter their ability level include love,  joy, peace, gentleness, faithfulness, self-control and kindness.
• Pray scripture for your child each day. When my son, Allen, was at the height of his struggle with post-traumatic stress disorder caused by early medical trauma, I realized II Timothy 2: 21-22 spoke directly to his situation. So I began praying it for him every day. When God began fulfilling those scripture promises, I added II Timothy 3:14 – 15. As you find scriptures that speak to your child’s situation, begin praying them back to God.

Thirty Day Prayer Guide

One of my goals this year is to create a thirty day prayer guide for parents of kids with special needs. Each day would include a character trait or a fruit of the spirit to pray for your child, along with a pertinent scripture. If you have suggestions about what should be included, leave a comment. The more ideas the better.

Prayerfully yours,
Jolene Philo