Tag Archives: Special needs

Rhymes with Orange

Special Needs Parenting, , , , , , , , , , , , , ,

I recently traveled to the Orange Conference in Duluth, Georgia.  This was my first experience with Orange, a publisher of church curriculum and books on leadership, etc. Picture 6,000 of your closest friends in church leadership who are excited about the future of the church and passionate about doing their best in extending God’s table to all. Reggie Joiner, the head of Orange, talked about his goal being to serve in the church, leaving it in better condition than how it was given to our generation, and raise up the next generation with the same passion for God so that they leave the church in even better condition than how it is received from our generation. It was a high-octane three days of powerful worship, thought-provoking speakers, great entertainment, and informative break-out sessions with practical tools to equip leaders.

I was invited to the Orange Conference by Amy Fenton Lee of The Inclusive Church, and the leader/organizer/author/tornado of terrific responsible for the development of their special needs track. As a parent of a child with special needs and pastor in the United Methodist Church, I can’t begin to describe how exciting it was to see so many church leaders who were passionate about embracing families with special needs.  Picture a break-out session with space for 460 people and folks having to be turned away at the door because the session was full. Fire Marshall’s rules.  There was no other option.

The church has come so far from when my son was young.  Not only are there great resources available now, but there is increased awareness of the needs of families and church leaders are eager for the tools to be in ministry with these families.  Katie Garvert of Woodmen Valley Chapel in Colorado Springs shared her church’s family approach to special needs, pairing with Ted Lowe who offered tools for how churches can help strengthen marriages.  Meaghan Wall, Pastoral Leader for Special Needs at Stonebriar Community Church in Frisco, Texas shared practical ideas for leading teen volunteers, as well as how volunteers can work with children and students with challenging behaviors. This was a great companion piece to Dr. Stephen Hunsley’s session about training volunteers in how to include students with autism. Connie Hutchinson from First Evangelical Free Church in Fullerton shared her 23 year journey on staff leading special needs ministry.

Of course, connecting with other participants was just as energizing and inspiring.  I traveled with Dena and Linda from a church in my area, Sugar Land First United Methodist, who are actively training and recruiting to start a special needs ministry.  At one session I met Amanda from Texas and J.D. from Colorado who both lead parent support groups.  Having led a support group for four years myself, I am excited about exchanging ideas and experiences. I shared several meals with Jennifer Ross, Special Needs Director from Church of the Resurrection. She shared the story of how they created a ministry to include adults with special needs in a day program that provides outreach to the community through student backpacks and a baking ministry.

I mention all of these great leaders because they may have tools that your church needs to help welcome families with special needs.  They are an easy google search away and I know every one of them has a heart for adding another leaf to God’s table so that there is room for everyone.

I know the church doesn’t always get it right.  After all, it’s made up of people! We all make mistakes. At times, pretty big ones.  I wish every parent always had positive experiences when attending church as a special needs family. Sadly, I know that is not the case. Folks have stories to tell about real ways they have been hurt when the church doesn’t get it right. I have those experiences within my own family of three. It hits close to home.  It’s good to process those experiences and learn from them, releasing our woundedness, and helping those in ministry understand the needs of our families.

What is exciting to me is seeing this tide of rising support and understanding, new leadership that is, per Reggie, taking the church as passed on to them, making it better,and passing it on to the next generation, a generation that is so much more inclusive of all families.  The broad giftedness of the speakers reminded me of Paul’s words to the church in Ephesus:

“The gifts he gave were that some would be apostles, some prophets, some evangelists, some pastors and teachers, to equip the saints for the work of ministry, for building up the body of Christ.” (Ephesians 4:11-12 NRSV).

Some in special needs are gifted in creativity for inclusion, others are gifted in understanding and working with challenging behaviors, others are good at strengthening marriages and family unity, others are good at providing emotional and spiritual support, others are good at being advocates in the church for those who have not been seen or heard at times.  It takes all of these gifts of all of these leaders, and many more besides, to equip the church to be what God calls us to be as the body of the church and followers of Christ.

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The Greatest of These is Love

Special Needs Parenting, , , , , , ,

When my son was an infant we did not live near extended family.  They were all in California, with two outliers in Oregon.  We lived in Alaska, having been whisked there five years prior by my husband’s company the day after we said, “I do!” With Craig being the only grandchild on one side of the family, and only one of two on the other side, we received requests to provide many videos of our whopping five-pound guy.  We then received complaints that they were a bit dull and the baby didn’t do anything.  It kind of made me wonder how they had never noticed when my husband and I were babies that we didn’t do anything either.  Perhaps the memory had faded with time.  Nevertheless, we kept up the videos.  We left off the long crying spells, the colic, and the inability to be comforted.  We left off the anxiety as milestones came along just a bit later than expected. Not enough to cause complete alarm, but just enough to make you go, “Hmmmm.”

This past Thanksgiving I visited my mother and she surprised me with a DVD that condensed all of those videos sent over the early years of Craig’s life. Our family of three settled in around the fireplace to share those memories recorded decades earlier and long forgotten. First baths, first smiles, cuddles in the rocking chair gave way eventually to tottering steps holding his daddy’s index fingers like handlebars. Watching his first haircut, I am amazed that Craig still has both of his ears after seeing him whip his head around trying to see what I was doing with those scissors.  I especially enjoyed the clips of me chasing him through the house, complete with Mark’s camera commentary and Craig’s shrieks of laughter encouraging me to ever higher levels of ridiculousness.  Parents will make complete fools of themselves for their children!  I collapsed on the couch, telling Mark, “I think it’s time to stop.  He seems tired.”  To which he replied, “I think mommy is the one who seems tired!”  He was right, and has video evidence to prove it!

I think that is what I recall most from those days, being tired, being a busy working mom, being a bit anxious about Craig’s development.  As a first time parent I had no point of reference.  Every child cries and cannot be comforted, every child can be picky about food, every child can be hard to put to bed, but … As years went on diagnoses came. First, ADHD. Then OCD. Then dysgraphia. Then anxiety. Then Tourette’s. Then Asperger’s. My focus became therapy and medication and behavior plans. Well, my focus was Craig, but also a whole lot of new things that became part of the world of helping Craig to be the best Craig he could be.

Somehow, in the midst of the intervening years those are the memories that crowd to the front. Toss in some vivid memories of “proud moments in parenting” when I was not as patient as I should have been and I realize I forgot something very important at the heart of it all.  I forgot about how truly, deeply, madly I love that baby boy who has grown into a young man of whom I am so proud.

Of course, I know I love my child.  He is part of who I am, even as he is separate and autonomous.  Yet, those videos brought home for me the underlying purpose of parenting. Deep love. It is so much a part of my everyday life that somehow deep love faded into the background of daily recognition.  In the shrieks and giggles and racing legs clad in fleece-footed jammies, I glimpsed it.  I even glimpsed it in those “boring” videos of us sleeping on the couch and rocking in the chair.  I think that is why we recorded so much of those times.  It wasn’t that they were exciting to watch, but that they were steeped in a new found deep love and wonder for the tiny person who was, and is, the biggest part of our lives.

The apostle Paul wrote to the church in Corinth at a time when they had forgotten a bit about who they were and why they were a church, a gathering of people representing Christ to the world.  He wrote for many chapters offering guidance, suggestions, and the occasion admonishment.  Finally, in chapter thirteen he spelled it out plainly. The Christian walk is all about love.  He reminded them that love is patient, love is kind, love is not envious or boastful or arrogant or rude.  He concluded that chapter, “And now faith, hope, and love abide, these three; and the greatest of these is love.” (1 Cor 13:13 NRS).

Faith, hope and love. Those are the definitive guides to parenting. Faith in God for guidance and direction as we shepherd our children through life, raising them up to their potential, whatever that may be.  Hope for a future that we cannot see, one that can be wrapped with anxiety and worry if we allow ourselves to be isolated from hope. Love, the greatest of these, prompts us to sleep on the floor next to a crib, go one more round with the insurance provider to advocate for our child’s needs, or simply make funny sounds to see a little face light up with joy. Of course we do those things and many more! We are made in the image of God and God’s character is defined by love for all people and all of creation. That deep love we feel for our child is but a dim reflection of the love that God feels for us, for our children, and for our families, whatever size and shape they may be.  God’s love is always there, even when we forget to notice. I wonder.  When we get to heaven will God show us a shaky home video of our lives, reminding us of all the times and all of the ways that we were loved by God as we grew as Christians and reached up to our potential as followers of Christ?

Faith, hope and love.  We need all three as parents; and the greatest of these is love.

Easter: It’s All in the Seeking

Special Needs Parenting, , , , , ,

For me, Easter is steeped in memories of my childhood. We’d pile in our two-toned Oldsmobile, nicknamed Gladys, driving two hours from my home in the Bay Area of California to my grandparent’s house in Sacramento. The eternal question was offered up regularly by me or my brother in the backseat, “Are we there yet?” Saturday was a blur of preparations, including boiling and dying eggs.  Finally, the big day arrived. Easter Sunday! I was eager to get up and see what the Easter bunny brought. “No candy until after church.” But then grandma would wink at me and, when my parents were out of sight, sneak me a small foil-covered chocolate egg.  She also regularly let me have ice cream for breakfast.  I loved visiting grandma! Then it was off to church, my tightly combed ponytail facilitating a smiling expression that belied my discomfort in the inevitably itchy Easter dress.  My reward for sitting quietly all through worship?  The Easter egg hunt afterwards in grandma’s backyard with all of the cousins! There were six of us so I learned to move fast and hunt low, being one of the younger and, therefore, shorter children.  In addition to tons of boiled eggs, plus plastic ones filled with chocolates, there was also one special egg that had a dollar in it, a big find for a preschooler in the mid-60’s!  Ready, set, GO!!!!  Mayhem ensued in a free-for-all, mad dash for those precious eggs. Afterwards, grandma gathered up the boiled eggs and made egg salad and deviled eggs out of them. We kept the candy. The one lucky recipient of the money egg was typically just a bit smug, snapping that crisp dollar bill under the disappointed noses of those less fortunate.

The Easter egg hunts for my son were much more sedate.  Being an only child with ASD and having no extended family living within 2,000 miles, our egg hunts were for a party of one. The community egg hunt was over-stimulating and that competitive scramble of hundreds of children guaranteed a meltdown.  At times I have felt guilty that his Easter memories were so different from mine. I suppose my concern was that I offered him something less. That guilt caused me to compensate with more eggs than one child needs, and inflation greatly blessed the contents of the money egg. What Craig taught me as he grew up is that what I offered wasn’t less, rather it was different. More important, it was just right for him. Looking back now, he says he loved knowing he didn’t have to rush. He could really enjoy the moment, knowing that the hunt was all for him and the one extra special egg was his reward if he just kept looking long enough.  We hid that one very well! He never wanted us to show him. He needed to find it for himself. For him, the joy of the hunt came in looking for something, even when what he was looking for wasn’t where expected it to be.

What Craig experienced, on a rather profound level, has much to do with what Easter is all about. After Jesus was crucified and laid in the tomb, on the third day the women came to attend his body. Except Jesus’ body wasn’t where they expected it to be. Thus began a Easter hunt of a much more important nature.

Then the angel spoke to the women. “Don’t be afraid!” he said. “I know you are looking for Jesus, who was crucified. He isn’t here! He is risen from the dead, just as he said would happen. Come, see where his body was lying. (Mat 28:5-6 NLT)

What Christ offers to us through the resurrection is a gift for everyone, but it is a gift claimed through the individual effort of seeking. It is not a gift another person can bestow upon me or you or anyone else. Rather, this gift only comes through seeking for ourselves, encountering Christ, and proclaiming him as Lord in a  one on one encounter. The joy of discovery in finding Christ magnifies that innocent joy of the childhood experience of Easter. It celebrates finding what we are seeking.

Sometimes as parents of children with special needs, what we are seeking is simply a practical answer to how we can be part of the Easter celebration. With Easter Sunday coming tomorrow, I understand how it is hard for some to be part of those large celebrations. Crowded sanctuaries, physical accessibility limitations, sensory and anxiety, issues all make high holy days especially challenging.  If you are looking for a way to be part of a worshiping community on Easter Sunday, here is a wonderful option available online. Front Door Online church specifically seeks to offer a worship experience geared to families with special needs.

http://drgrcevich.wordpress.com/2014/04/17/the-front-door-online-church-for-families-impacted-by-disabilities/

Happy Easter to all and may you find that which you seek.

What I Learned on World Autism Awareness Day

Autism, Special Needs Parenting, , , ,

On Wednesday, April 2 2014, I joined in with celebrating World Autism Awareness Day. The tagline of the day was “Light it up blue!” and so I did.  I updated Facebook with a blue cover photo and profile pic, all promoting autism awareness. I also dressed in blue, celebrating the many people in my life impacted by autism, including my son.

Figuring out what to wear was a bit of a challenge.  I discovered at the last minute that I do not have much blue in my professional wardrobe, but one royal blue cardigan peeked out among a rack of long sleeves. Putting it on, I recalled something else I own that went perfectly with that royal blue sweater, a magnificent fascinator filled with feathers, tulle and a bow, all framed in a malleable brim. I bought it for a trip to the Kentucky Derby that never happened. Just the perfect thing to add a bit of whimsy to a day of celebration for friends whose lives could use to be celebrated publicly much more often. Upon arrival at the office, I clipped on the fascinator at the oh-so-perfect, jaunty angle (no small task that!), snapped a selfie, posted it and tagged my many friends whose lives are touched by ASD.

Originally, I meant to remove my hat after the selfie. I felt a bit self-conscious in the office.  I thought, “If I wear this hat, I’m going to get funny looks and have to explain it all day long.” Then again, isn’t that what an AWARENESS day is for? Creating awareness?  If I just wore blue, I reasoned no one would think that was out of the ordinary. But sporting a headful of feathers and tulle? That’s a whole other matter!

What started as my grand social experiment in creating awareness became something else entirely by the end of the day. At first, it was kind of novel. I encountered the anticipated funny looks and immediately explained to each person why I was wearing a hat. By the time I had done it, five times, ten times, the novelty faded.  It got to the point that I skipped over a few opportunities for explanation and just walked on by, accepting the funny looks and occasional humorous comment.  By noon I found myself almost hiding in my office, knowing that another trip down the hall would be another encounter.  It grew old getting odd stares.  I debated removing my hat. It would have been so easy to just take it off and be “normal.”

I wonder how often people with autism wish they could simply take it off. Wouldn’t it be nice not to get the quizzical looks for behavior that isn’t what others expect? Even just for a while? As a parent of a son with Asperger’s, I’ve felt those stares weighing on me and on my son, especially when he was younger. That repeated question from those who don’t understand, “Why can’t he just (fill in the blank – behave, be quiet, eat what everyone else is eating, etc.)? Well, the answer is he can’t, at least not on that day.  It’s not a choice.  Asperger’s, like other special needs, is not something that can be taken off. My hiding in the office and avoiding the break room reminded me of times when my son was young and I longed to take him to the playground, but knew that was not a place where he met with much success. I would gaze out my dining room window toward the playground. If there were other children and parents there, and it had been a challenging day, I knew we just couldn’t go that day.

In the parent support group that I lead, we’ve all experienced times when we get tired of receiving “the look” and choose to withdraw. It’s easier to be alone, or so we tell ourselves.  It is really isn’t. We are made for community. It reminds me of the story in the Gospel of John.  Jesus was walking through Samaritan territory and he stopped at a well in the middle of the day while it was hot and no one else was around.  Soon a woman came, one who chose to isolate herself from stares and whispers, coming to the well in the hot afternoon sun when others were at home. It was easier for her to be alone, too. But it really wasn’t. And Jesus knew it. By the end of her conversation with Jesus, she was restored to community. So eager was she to get back to her people, that she left her water jug by the well and ran all the way back to her village, inviting others to come and see Jesus for themselves. That is what Christ does for us. He restores us and calls us out of isolation and into community.  Yes, even us with lives touched by special needs.

This reminds me of the amazing story of a church that embraced Max and Emily Colson. Emily posted a blog that went viral sharing her experience of a cruel movie audience that heckled, jeered and mocked, driving Emily and her son Max out of the theater due to Max’s autism. Their church stood beside them and rented out an entire theater so that 500 people could attend Movie with Max.  Their church celebrated autism awareness, not with a splash of blue, but by embracing and including.

Our need for inclusion and understanding is part of the fabric of our beings of which we are wonderfully woven by God. Living into inclusion involves creating awareness in whatever way we can, whether at a movie theater with 500 of our closest friends, or wearing a silly hat to the office. When we stay engaged, even when it is hard, it is one more chance to shine the light of Christ for the ones in our lives who put the “awesome” in autism.

Autism Awareness Day