I am so thankful for friends like Amy Fenton Lee who blogs at www.theinclusivechurch.com. She often visits churches with special needs ministries and then posts what she learns (including pictures and paperwork and policies) so the rest of us don’t have to reinvent the special needs ministry wheel. But once in a while, she blogs about something different, like this guest post from Gillian Marchenko.

Meet Gillian Marchenko

Gillian Marchenko is the wife of a pastor and the mother of four daughters. The two youngest live with Down syndrome. She’s also writes, speaks, and blogs about special needs. (To learn more about her ministry, visit her website at www.gillianmarchenko.com.)

Two Questions

In her guest post at Amy’s blog, Gillian shares her answers to two questions she was asked:

1. How do church members love your girls?
2. What does your church do to serve you specifically as a family with kids who have special needs?

Two Answers

Gillian’s answer to the first question was what you might expect: Of course, they love our girls.
But the answer to the second didn’t come easy. In answering it, Gillian realized two things:

1. Their church members don’t know how to serve their daughters.
2. Her family does not ask for help.

To read the entire guest blog, go to Amy’s website. While you’re there, take some time to look around. You will find plenty to get you thinking about special needs ministries.

How Would You Answer the Two Questions?

Do your church members love your kids with special needs? Does your church body know how to serve your kids? Leave a comment about your experiences. What don’t church members know? What have you neglected to tell them?

Thanks Amy and Gillian,
Jolene

Not too long ago, my friend Shannon Dingle (she blogs at www.theworksofgoddisplayed.com) sent an email. “Have you seen the new resource from Access Ministries at McLean Bible Church?” she asked. I hadn’t seen the new goodie, but thanks to the link she included, I was able to take a look.

Special Families – A Casserole Is Not Enough

The new resource is a FREE downloadable booklet, Special Families – A Casserole Is Not Enough. It was co-written by Jackie Mills-Fernald, the director of Access Ministries and Jim Pierson, the granddaddy of special needs ministries. (FYI – McLean Bible Church in Washington, DC has an outstanding special needs ministry and hosts a national special needs conference each year.)

What’s Inside A Casserole Is Not Enough?

Here are some of the issues the booklet addresses:

• Finding Respite Care
• Common Concerns
• Working with Schools
• Personal Coping
• Keeping the Family Functioning
• The Importance of Community Involvement
• Strengthening the Life of the Family

Throughout the booklet, stories of families assisted by special needs ministries are featured.

Download the Booklet

To download the FREE booklet, click here. To look at the other downloadable materials available for parents, click here. After you’ve downloaded and digested your free goodies, come back and leave a comment. Tell us what you liked, what encouraged you, what you wished had been included but wasn’t. Your thoughts are welcome here!

Jolene

Kuddos to St. Peter’s Roman Catholic Church in Warwick, Rhode Island. In 2008 they added a class called Autism and the Sacraments. Since then, the program has grown every year.

St. Peter’s Autism Program

This non-denominational church attender checked out a post about St. Peter’s  program at the Autsable website and fell in love with what I read. An article by the Associated Press explains how the classes have been adapted and structured to meet the needs of kids with autism. On St. Peter’s website, the page devoted to the program provides a history about it has grown each year.

Two Impressive Things

But I was most impressed by two things. First, the church leadership. They understood the call of Jesus to shape their services to meet the needs of kids rather than expect the kids to fit the shape of the services. With that understanding they developed some innovative and easy ways to instruct students about the truth of God’s unchanging love and the sacrifice of His Son. Second, the pictures of the families in church are priceless. To see them, scroll down on St. Peter’s Autism Program page. If you’re not smiling after a look at the faces of the kids and their parents, there is something wrong with you!

What Programs Do You Know About/

St. Peter’s is only one of many churches developing special needs ministries around the country. Are you familiar with a good program in your area? If so, please leave a comment about what’s happening in a church (Catholic, Protestant, or non-denominational) where you live.

Still smiling,
Jolene

Christmas, the holiday of joy and peace and hope, is almost here. But for parents of kids with special needs, it can be a time of sorrow and restlessness and despair. We wonder how a perfect and all powerful God can identify with the struggles our children live with every day.

The more I learn of God, the more convinced I am of his complete understanding and empathy for our children. When his Son came to earth in human form, he laid down perfect power, knowledge, and communion. Encased in human flesh, he was encumbered, dependent, and limited. The Son, both as a child and as an adult, lived with his own version of special needs.

May that thought provide a new perspective as you read the Christmas story (Luke 2:1-40, The Message Version) below.

The Birth

About that time Caesar Augustus ordered a census to be taken throughout the Empire. This was the first census when Quirinius was governor of Syria. Everyone had to travel to his own ancestral hometown to be accounted for. So Joseph went from the Galilean town of Nazareth up to Bethlehem in Judah, David’s town, for the census. As a descendant of David, he had to go there. He went with Mary, his fiance, who was pregnant. While they were there, the time came for her to give birth. She gave birth to a son, her firstborn. She wrapped him in a blanket and laid him in a manger, because there was no room in the hostel.

The Announcement

There were sheepherders camping in the neighborhood. They had set night watches over their sheep. Suddenly, God’s angel stood among them and God’s glory blazed around them. They were terrified. The angel said, “Don’t be afraid. I’m here to announce a great and joyful event that is meant for everybody, worldwide: A Savior has just been born in David’s town, a Savior who is Messiah and Master. This is what you’re to look for: a baby wrapped in a blanket and lying in a manger.” At once the angel was joined by a huge angelic choir singing God’s praises: Glory to God in the heavenly heights, Peace to all men and women on earth who please him. As the angel choir withdrew into heaven, the sheepherders talked it over. “Let’s get over to Bethlehem as fast as we can and see for ourselves what God has revealed to us.”

The Joy

They left, running, and found Mary and Joseph, and the baby lying in the manger. Seeing was believing. They told everyone they met what the angels had said about this child. All who heard the sheepherders were impressed. Mary kept all these things to herself, holding them dear, deep within herself. The sheepherders returned and let loose, glorifying and praising God for everything they had heard and seen. It turned out exactly the way they’d been told!

The Dedication

When the eighth day arrived, the day of circumcision, the child was named Jesus, the name given by the angel before he was conceived. Then when the days stipulated by Moses for purification were complete, they took him up to Jerusalem to offer him to God as commanded in God’s Law: “Every male who opens the womb shall be a holy offering to God,” and also to sacrifice the “pair of doves or two young pigeons” prescribed in God’s Law.

The Promise

In Jerusalem at the time, there was a man, Simeon by name, a good man, a man who lived in the prayerful expectancy of help for Israel. And the Holy Spirit was on him. The Holy Spirit had shown him that he would see the Messiah of God before he died. Led by the Spirit, he entered the Temple. As the parents of the child Jesus brought him in to carry out the rituals of the Law, Simeon took him into his arms and blessed God: God, you can now release your servant; release me in peace as you promised. With my own eyes I’ve seen your salvation; it’s now out in the open for everyone to see: A God-revealing light to the non-Jewish nations, and of glory for your people Israel. Jesus’ father and mother were speechless with surprise at these words. Simeon went on to bless them, and said to Mary his mother, This child marks both the failure and the recovery of many in Israel, A figure misunderstood and contradicted – the pain of a sword-thrust through you – But the rejection will force honesty, as God reveals who they really are.

The Hope

Anna the prophetess was also there, a daughter of Phanuel from the tribe of Asher. She was by now a very old woman. She had been married seven years and a widow for eighty-four. She never left the Temple area, worshiping night and day with her fastings and prayers. At the very time Simeon was praying, she showed up, broke into an anthem of praise to God, and talked about the child to all who were waiting expectantly for the freeing of Jerusalem. When they finished everything required by God in the Law, they returned to Galilee and their own town, Nazareth.  There the child grew strong in body and wise in spirit. And the grace of God was on him.

God had a great purpose in mind for the Christ child encumbered by special needs. He has a great purpose for your child, too.

Blessed and Hopeful Christmas to you,
Jolene

Brian Rizzo is one cool dude. In 2008 when he was 14 years old, he was working on his Eagle Scout badge. Because his younger sister lives with autism, he developed a special needs library for his church parish. Like I said, one cool dude.

But Wait, There’s More!

Turns out, that project was only his first contribution to the special needs community. He then worked with his parents to develop learning tools to help children with special needs prepare for their First Eucharist. Those materials can now be purchased through Loyola Press.

Marla Murasko and Special Moms Entrepreneur Club

This product came to my attention via a blog post by Marla Murasko at Special Moms Entrepreneur Club. One Sunday, her family’s parish announced upcoming confirmation classes. She searched for materials that would allow her son (only 5 1/2 at the time, but as parents of kids with special needs know, it’s best to start looking early) to further his religious education when he was older.

Take a Look at What’s in this Kit!

Though I am not Roman Catholic, I was impressed with the contents of the Adaptive First Eucharist Preparation Kit. Each kit includes:

The Adaptive First Eucharist Kit for children with autism or other special needs includes eight pieces:

• My Picture Missal Picture Book and Mass Picture Cards are for use at Mass. They help the child maintain focus and actively participate in the Mass.
• Bless Yourself Matching Puzzle helps the child learn how to make the Sign of the Cross. This activity can be paired with parent or catechist modeling so it becomes a gross motor imitation task.
• Who Is Jesus? Instructional Story introduces the child to Jesus as the Son of God and relates God’s family to the child’s family.
• Communion Is Not the Same as Food Matching Puzzle helps the child distinguish between the Eucharist and ordinary food.
• How to Receive Communion Matching Puzzle shows all the steps of receiving Communion reverently, providing a guide for the child to practice. This learning tool may be taught with sequencing or modeling.
• I Receive Communion Social Story is a book that reinforces the reverence and proper steps of receiving Communion.
• Helper Guide includes tips on how to use the kit.
• A backpack so the child can transport the items from home, faith formation sessions, and Mass.

Every Denomination Needs Someone with Brian Rizzo’s Vision

If every Christian denomination had someone with Brian Rizzo’s vision, the church could share the hope of Christ with many more children who have special needs. We need to work together as Christians to spread the word about resources for special needs ministry across denominational lines. So if you know of products for special needs ministry or people who make them, leave a comment. Let’s help Brian reap a mighty harvest for the Kingdom of God.

Your sister in Christ,
Jolene

When our son was little and life was a black hole of special needs, I could become one pity party momma. Sometimes, it was hard to break free of the self-pity. Sometimes, I wanted to break wallow in it. But as Steve Siler’s song of the month shows, parents of kids with special needs aren’t the only people who struggle. Take a listen to Everybody’s Having a Hard Life to see what he means.

Check Out Steve Siler’s Devo

If that got you thinking, take a few minutes to read through Steve’s devo. Maybe it will help you escape the black hole of self-pit today.

A Sign of the The TImes

There is one of those letter signs outside of a Christian bookstore on 12th Ave South in Nashville just a few blocks from my house. Ordinarily they use the sign to advertise the latest new book release by a popular author. One time though they changed it up and posted something that had nothing to do with promoting anything in their store. On this occasion the sign simply said, “Be kind. Everybody is having a hard life.”

As director of Music for the Soul I find myself a magnet for people’s stories. And what I’ve learned over the last several years is that the sign is right. All of us have pain in our lives. And even when everything is good an ordinary day can often leave most of us feeling overwhelmed, our hands full trying just to keep up with our normal responsibilities.

In any case, as followers of Christ I think the message is a word for all of us. We are to encourage one another, loving our neighbors as ourselves. Let us love with the love we have received from the Lord.

After all, everybody is having a hard life,
Steve

Check Out the Music for the Soul Website

When Steve sent this song in early October, he also included the following note:

Our new full length album Dignity: Songs & Stories for Caregivers will be ready sometime in the next six weeks or so.  We encourage you to visit our website and Facebook page to keep up with our news and to share our ministry with your friends.

The album sounds like a great gift for the caregivers in your life, doesn’t it? Or if you’re the caregiver, you may want to add it your own Christmas list. Sounds like a good idea to me.

Leave a Comment

If Steve’s song touched you, please leave a comment. Your thoughts are always welcome.

Jolene

]]> http://www.differentdream.com/2011/11/everybodys-having-a-hard-life-by-steve-siler/feed/ 0 http://www.differentdream.com/2011/09/steve-siler-says-its-the-little-things/ http://www.differentdream.com/2011/09/steve-siler-says-its-the-little-things/#comments Tue, 27 Sep 2011 15:00:46 +0000 Jolene http://www.differentdream.com/?p=4403

Steve Siler of Music for the Soul is back with another song of the month. This month, he reflects upon the acts of worship we perform through little acts of kindness done for those in need. Most months, Shelly Beach writes a devotion to accompany the song of the month, but she was tied up with a writing deadline. So Steve wrote the devotion himself.

The Little Things

American loves spectacle.

Not just a football game.  Not even just the national championship football game. But the SUPER Bowl, complete with a mega-sized American flag, an F-15 flyover, fireworks, and a halftime show by Bruce Springsteen.

Stores don’t fit on street corners anymore.  They are now the size of small towns.  At my market your milk is in danger of spoiling before you can even get to vegetable aisle.  A marketing campaign for a major store chain proudly proclaims they have “MORE OF EVERYTHING!”

The message is definitely “bigger is better.”  And yet most of us, know that really isn’t true.

One morning recently I noticed a little purple flower no bigger than a nickel.  I stopped and really looked at it.  This tiny living thing was offering it’s blessing quietly.  No fanfare, no hyperbole.   All that was required for it to share its gift of beauty was for me to take notice of it.

As I thought about it I realized that this little flower was a miracle.  There are so many miracles in our everyday miracles that we sometimes fail to take note of them; in my own case often rushing right past in search of a BIGGER miracle.

Unfortunately that tendency can quickly turn to rushing right past human beings as well.  I wrote this song Little Things, as a reminder to myself to take the time to see the miracles and the opportunities to love that are all around me each and everyday.

Listen to Steve’s New Song

To hear the song, click on The Little Things. If it touches you, leave a comment about how it changed your view of the little things, the little acts of worship that please God more than the big, showy things do.

Jolene

In yesterday’s post, guest blogger Rebekah Benimoff shared her reaction and spiritual struggle after her son was diagnosed with juvenile diabetes. In today’s post, you’ll read about her son’s struggle to reconcile his disease and his understanding of God. See what you think.

He Could Have Stopped It

“Mommy, why did God give me diabetes?”

We were snuggled together on the couch; one of the fleeting treasures a mother of a pre-teen knows but only rarely. My son’s words tore my heart in two, but I remembered to keep quiet and let Tyler share. When he finished sharing how sad and angry he feels about his life-altering diagnosis, I was quiet for another moment, gathering my thoughts.

“Oh, honey,” I said, “I don’t think that God gave you diabetes…”I trailed off, uncertain how to express my own learning process in words.

“He could have stopped it.”

I was struck at how my son understands so much more than I give him credit for.  Isn’t this thought how we respond to every difficulty, every loss?

Why Didn’t He Stop It?

“Why didn’t he stop it Mommy?” Tyler asked.

I took a deep breath and whispered a prayer for wisdom. “Tyler, I believe that some things happen because we live in a sin sick world. Life is not perfect– not at all the way we want it to be.” I struggled for words. “Some people think God causes bad things so we can learn a lesson, but I don’t. I think God takes what the enemy intends for bad and He changes it around and uses it for good.”

“So the devil gave me diabetes?”

“Well…”, I trailed off.  All I was left with was the truth. “I don’t think so. I think our enemy does cause some of the bad stuff that happens.” But a medical diagnosis? “No, sweetie… I don’t really know why it happened.”

God Wants to Make Us Whole

I’ve experienced many faith groups that believe all illness is due to sin, passed down from one generation to another.  But I’ve been through a number of healing based studies, and each time I prayed and broke the curse of generational sin, God spoke to my heart the need to pray for my son to be healed, not just physically, but emotionally. We long for physical healing, for removal of all difficulties, but I am finding that most often it is our hearts, our souls that He longs to heal. He wants so much more for us than we want for ourselves. We want the trial to come to a sudden halt, yet God’s desire is to make us whole. He loves us that much!

God Wants to Heal Your Heart

I sighed.”Tyler, I don’t really know the answer. I don’t know why God allowed you to get diabetes.  What I do know is that God has told me to pray for your heart to be healed.” Tyler nodded, so I went on. “You see, I think that getting diabetes was very hard for you. It was so scary, especially in the hospital and that first year with so many shots and seizures.  I think your heart is hurt. I think you need to work through all the hard things you went through—all the hard things you still go through. I pray you will work through the grief and that God will heal your heart.” I touched my hand to his chest, covering his heart, and gave him a big bear hug.

“Yeah,” Tyler said. “It is really hard. I feel sad and angry sometimes.”

Isn’t that the truth? When bad things happen, that’s the natural response. I sought to encourage my son, to let him know that these feelings are normal and okay, and that I was there for him if he needed to talk more.

A Mother’s Goal

For Tyler, that was enough. Enough to know that his mom would listen, and not contradict. Not tell him he was wrong, or judge him for how he feels. We still don’t know the answer to our questions, but by being quiet, resisting the urge to talk and tell him what to do, and how to feel, we actually moved closer in relationship to each other. And to God, too.

As a mom, that’s my goal. To let my children know I am human, I am fallible, but I love Jesus.  I hope and pray that they will walk in God’s plans and purposes every day of their lives, accepting His grace and healing along the way.

What Hard Questions Are Your Kids Asking?

Whew, Tyler put Rebekah on the spot with his hard question. And God gave her grace to answer with wisdom, faith, and honesty. So, what hard questions are your kids asking? And how did you answer? Leave a comment to share your wisdom or to ask other parents at DifferentDream.com for advice.

Jolene

Once again, it’s my pleasure to introduce a new guest blogger, Rebekah Benimoff. In today’s post, she shares the story of how her family’s special needs adventure began. Though your child’s diagnosis may be different than her son’s, I think you’ll identify with how she and her family responded.

A Life Altering Diagnosis

It began with rapid weight loss. Tyler dropped from a 4T, to a 2. A boy who was already small for his age began to look anorexic. When he started going to the bathroom every few minutes, I called my mom since my husband was deployed.  “Do you think it could be a bladder infection?” She suggested that it might be diabetes, and I simply could not take that in. I took Tyler to our doctor and shared what was happening. Within minutes I had the shock of my life. There were massive amounts of sugar in his urine.

We were sent to the hospital and the next days were a blur of shock, fear, and information overload. The Red Cross flew my husband home, and we struggled to cope. Tyler would dissolve into screams each time he had to have a shot. Desperately he would cry out for me to stop the doctors and nurses who were trying to keep him alive. I could only watch, feeling helpless and overwhelmed.  The first week was a nightmare, and the next year was not much better. My husband returned to complete the military mission, and I was left to care for a little boy who hated needles and was having diabetic seizures due largely to a doctor who over-medicated—an attempt force Tyler to gain weight. Tyler figured out that when he ate, he got a shot. So he decided he’d simply stop eating.

Moving Forward

A year later we found a better endocrinologist, and Tyler began to stabilize- just in time for Roger to deploy again, this time to Iraq. I had little time to do much other than survive. During Roger’s second deployment to Iraq, Tyler started kindergarten, and I began to work through an inner healing study. I discovered that I needed to work through quite a few issues related to the trauma of Tyler’s diagnosis, and the year that followed.

Fear

I lived in fear that Tyler would die. He was still having seizures and low blood glucose episodes, even after we had a doctor that listened to my concerns. Tyler’s body was still producing some insulin, so stabilizing blood glucose levels was a shot in the dark. Even after the “honeymoon phase” ended, and all of the cells that create insulin had finally been killed off (by his own body), Tyler was super sensitive to insulin. We were referred to the nationally renowned Barbara Davis Center for Pediatric Diabetes and Research, and had a wonderful support system, but I lived in terror that I would lose my son- if not now, then surely later. After much prayer, I came to the place of surrender. I pictured myself placing Tyler on the altar, much like Abraham did with Isaac, and I released my little boy to God.  I still go back to the altar now, every time fear creeps back in.

Forgiveness

I had a lot of work to do in the area of forgiveness. Many hours were spent praying over specific offenses related to the saga of diabetes—especially that first traumatic year. I had to forgive the doctor whose tactics caused Tyler’s seizures and low blood glucose episodes. I had to forgive myself for listening to the medical personnel, and not knowing better sooner. And I had to forgive God for allowing this disease to alter our reality.

Grief

When Tyler was diagnosed, I did not grieve the loss of my dream for him to have a normal childhood. Later I realized I needed to work though that loss. About the time I freed myself to face the issues, my husband returned from Iraq with PTSD. So the process of working through all the issues has had some stops and starts as other, more pressing matters have had to be dealt with. In the last year or so, I’ve been able to work through much of my grief regarding parenting children with special issues, as we continue to adjust to life with a husband/dad who has a brain injury. It is a process.

I am realizing that Tyler, too, needs to grieve, in his own natural way, and that listening is really the best way to help him work through his feelings.

Sound Familiar?

Does Rebekah’s story sound familiar to you? Leave a comment about the emotions you experienced when your child was diagnosed. And come back tomorrow for Part 2 of this series, and hear about Tyler’s reaction to his diagnosis.

Welcome, Rebekah!
Jolene

For those of us who dislike change, “transformation” is a four letter word. But this month’s song from Steve Siler at Music for the Soul assures us that transformation can be a good thing – for ourselves and for our children.

Meet Amelie Howe

This month’s song, Transformed, was written by Amelie Howe, a new member of the Music for the Soul family. To listen to the song, click on this link: Transformed

Read Shelly Beach’s Devotion

As always, Shelly Beach has written a devotion to accompany Music for the Soul’s Song of the Month. In it, she tells the story of a painful, but transforming time in her life.

Transformed

When I was seven years old, I once hid in the crawlspace below our house to try to avoid a visit to the doctor where I believed I’d be given a shot. In my opinion, pain was an enemy to be feared, even if it meant I had to sit in the dark with daddy-long-legs.

I lived with that same childish attitude well into my adult years. Although I never said the words out loud, I believed I deserved to live in a world of blue skies and butterflies, where real suffering didn’t touch my life. I measured God’s blessing by comparing my circumstances to others’. Amazingly, the grass was always greener in every one else’s yards.

Then in 1999 God gave me the gift of suffering in the form of a life-threatening brain lesion. Over the next years, I learned that God’s greatest gift to us is transformation, and that He loves us enough not to leave us where we are.

Joni Eareckson Tada, who has lived the last three decades of her life as a quadriplegic, has said, “Once you see your affliction as a preparation to meet God, you won’t be quick to call it suffering again … for the most part I consider my paralysis a gift… If a cross can become a blessing, so can a wheelchair.”

I thank God that I’ve come out of the darkness of the crawlspace – that I can trust my future to a God who is transforming me through the power – and, yes, the pain – of a crown of thorns.

How Have You Experienced Transformation?

Parents of kids with special needs live with transformation. Their dreams for their children, their expectations for parenting, and their understandings of healing, growth, and suffering are constantly transforming. If you like, leave a comment about how transformations you’ve experienced since the birth of your child.

Counting the letters in “transformation,”
Jolene

]]> http://www.differentdream.com/2011/08/steve-siler-shelly-beach-we-can-be-transformed/feed/ 2