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Twelve Tips for Special Needs and the Long, Long Summer

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

“Blank Calendar Shows Plan Appointment Schedule Or Event” by Stuart Miles from FreeDigitalPhotos.net

 

You have fixed all the bounds of the earth; you made summer and winter. (Psalms 74:17 NRS)

I told a lie. I didn’t mean to, but it just happened. I suppose I wanted to fit in with the other moms. Peer pressure is a powerful force, even for parents.

I was picking my son up from school toward the end of the year in second grade.  He walked home with me each day.  The school bus was too frustrating. The carpool line was long and caused anxiety as he waited to see my car.  So day after day I sweated in the late afternoon Texas heat with a handful of other moms outside the second grade hallway.

One mom gushed about her upcoming summer. “I can’t wait for school to get out. We’ve got swim team coming up. Then a trip to see grandparents. Then the kids are heading to my sister’s with their cousins so my husband and I can get away. After that we have vacation Bible school and then I’m sending them off to a week of camp for the first time.  We are going to try to fit in a trip to Disney if we can, but our summer is so packed it may have to wait until next year.”

Another piped up, “Same here.  I think we signed up for every single activity at the YMCA. Family is coming for a visit. It’s just crazy-busy all summer long.”

That’s when I lied. “Us too!” The second part wasn’t a lie, “It will be a relief when summer is over.”

All I could think of was the painfully blank calendar of non-existent summer activities.  Play dates? Kind of hard when your child has no friends.  Swim team? Ha! The noise, the chaos, that blaring horn and shrill whistle – not for my son on the autism spectrum. Vacation Bible school? I tried that once and, honestly, there were parents in that program who stopped speaking to me because I dared to enroll my son after the lead pastor encouraged me to do so. No way was I trying that again! The team activities at the YMCA? Those were a real challenge and more frustrating than fun to my son. He could have a full-blown meltdown playing BINGO. Siblings extending invitations to give us respite? Nope. We did have a couple of weeks planned to go visit grandparents, but two weeks out of twelve is a drop in the bucket.

This magical and marvelous summer the other moms described was not my world, though I desperately wished that it could be. So I lied and said, “Us too!” and set about erasing that lie by finding things to fill the days.

Here are a few strategies that worked for me:

  • Support groups. Other parents are likely to have kids in need of friends too. Ours was not the only family staring down the barrel of a long and boring summer.
  • “Special needs friendly” events. These were non-existent back when my son was young, but are becoming more and more popular. Check with local children museums, movie theaters, sports stadiums and performing arts venues.  For example, the Houston Ballet Company recently offered their first autism friendly performance, complete with interaction between performers and children afterwards.
  • Congregations with special needs ministries. Faith communities are much more aware and inclusive in summer camp and vacation Bible school. Find a program that fits your family and talk to the staff ahead of time so that they are prepared with volunteers who match the needs of your child. If budget is tight, volunteer your own time to help defray cost.
  • Summer camp for special needs children. There are more and more opportunities for children with special needs to experience summer camp. Some are child specific and some accommodate the whole family.  These often fill early so research registration dates and mark them on your calendar.
  • Check the calendar at local disability friendly non-profits. For example, in the Houston area, Family to Family Network and Easter Seals offer or have information about a variety activities and respite care. There is also Mikey’s Guide, a local publication to a broad variety of local disability friendly services and events.
  • Keep a routine. For many of our kids, structure is key. Set a routine for meals, errands, play time, family chores. Routine helps remove boredom.
  • Focus on therapy and acquiring new skills. Fitting in therapies during the school year can be a real challenge. Take advantage of available time to focus on areas for growth. Consider finding a tutor for challenging subjects to help keep your child from losing hard-won skills in math and reading.
  • Enjoy a less hectic pace for a while. While we live in a culture that glorifies “busy,” it is okay to step off the merry-go-round and enjoy a pace that is slower than the world around you.
  • Explore the outdoors. Children are inside for hours each day at school. Take advantage of summer as a time to get outside and explore parks, beaches, and walking trails. State and local parks in your area may have summer programs, such as guided trail tours, that suit a child’s interest and focus. If mobility is a challenge consider a tag along trailer for a bike. Check your own yard for bird nests and enjoy watching the new family grow.
  • Check out programs at the local library. Libraries are a treasure trove of child friendly activities and resources. The best part? They are free!
  • Water is wonderful in the summer heat. If the community pool is overwhelming, go at off times. No pool in your area? Create your own backyard water fun with sprinklers or an inexpensive wading pool.
  • Remember self-care. Parenting becomes 24/7 when children are home from school. With high needs children this can be especially tiring to the caregiver. Tag team with your spouse or other adult when you need a break. Schedule a night out as often as you can in order to nurture your most important relationships. Take time to do things you enjoy.

I learned that filling the summer isn’t about keeping up with what everyone else is doing.  Rather, it is about finding the pace and activities that best suits my family and flourishing there.

God of all seasons, Let there be renewal of spirit and foundations for friendships that last for all. May the bounty growing in the fields of summer also grow within the hearts and minds of nurturing communities of acceptance. Amen

Rev Doc Lorna

“Blank Calendar Shows Plan Appointment Schedule Or Event” by Stuart Miles from FreeDigitalPhotos.net

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Great, New Resource for Churches!

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Philo Weatherbee

Jolene Philo and Katie Wetherbee have created a fabulous resource for churches that are interested in starting or improving their ministry to families with special needs.  Written with as a metaphor of preparing for guests comign to a dinner party, Every Child Welcome guides the reader through the process of planing, preparing and implementing a ministry that is flexible and intentionally welcoming.

I had the opportunity to ask Jolene Philo for insights about the creative process and advice for churches seeking to offer a more inclusive welcome to families.

What inspired you to write “Every Child Welcome? How did you come to partner with Katie Wetherbee in the creative process?

Katie and I met at a special needs ministry conference in Des Moines, Iowa the fall of 2010. My first book, A Different Dream for My Child, had been out for about a year, and I was selling it at a book table. Katie was presenting several special needs ministry workshops for Key Ministry. She came up to my book table and said, “I’m Katie Wetherbee. I love your book!” I realized her workshops were the sessions I’d highlighted to attend. I went to them and realized our styles of teaching were very similar. Plus we had so much in common. We were both former public school teachers who’d worked a lot with kids in special education. We were both moms of kids with special needs. And we both blogged about special needs issues.

After the conference, we began to follow one another’s blog and corresponded by email. In one email, she asked if she could call with questions about a book she had in mind. After she explained her idea, I said, “I assumed you wanted to write a book that compiled the great teaching ideas and strategies you’ve posted on your blog.”

“Oh,” she said, “I don’t have a clue about how to write that book.”

I said, “Then let’s write it together.” And so we did.

We had a wonderful time working together. By the time the book was written, revised, and the publisher sent the final proofs, we couldn’t remember who had written what because our writing styles meshed so well.

What changes have you seen over the years in welcoming children with special needs?

When I first started writing about special needs parenting, the topic wasn’t on the radar screen of most Christian publishers, churches and program leaders. That has changed. Special needs ministry is now one of the hot topics in church and ministry circles. The number of formal special needs ministry programs has mushroomed in the past decade, especially in larger churches. Those churches attract a lot of families of kids with special needs, and that is wonderful.

But smaller churches still struggle to raise awareness and to become equipped to welcome kids with special needs. Katie and I wrote Every Child Welcome with those churches and their children’s ministry workers in mind. We hope the book can equip Sunday school teachers and mid-week children’s ministry volunteers to welcome kids even if their church doesn’t have a formal special needs ministry.

What strategies do you suggest for maintaining an inclusive ministry as children become teens?

Basically, when a church begins thinking about special needs ministry, they need to think of it as a whole church ministry, not as just a children’s ministry. They need to create a

welcoming climate for people with disabilities and special needs across church ministries and age groups. Church leaders need to consider special needs ministry a high priority by  making regular worship services inclusive. Greeters, ushers, and parking lot attendants need to be trained to welcome those with special needs. Children’s ministry leaders, youth leaders, and adult program leaders need to seek training to learn how to become more inclusive. Churches that create an inclusive culture throughout the church will find that moving kids from children’s programs to youth programs is easier because the culture is already in place.

What key advice can you offer to a church looking to begin an inclusive ministry for children with special needs?

First, start small by meeting the needs of families already attending your church. If a family has a child with Down syndrome, ask what the child needs to be able to fully participate and work together to make that happen.

Second, educate your church leadership and ministry about the importance of special needs ministry. Read books, attend special needs ministry conferences, or host a special needs ministry training at your church. Create a special needs ministry plan based on what you’ve learned and what your child needs.

Third, educate everyone at your church about the importance of welcoming people with special needs and disabilities. Start creating a church culture, using ideas you’ll find in Every Child Welcome, so your church becomes a place where people with special needs are welcome rather than a church with programs for people who have special needs.

Jolene-and-Katie-300x275

About the Authors:

Jolene taught elementary school for 25 years. She’s author of the Different Dream Parenting series and blogs at her special needs website, DifferentDream.com. She speaks at special needs conferences around the country. Jolene and her husband enjoy their empty nest in Boone, Iowa.

Katie is a former special education teacher. Her educational consulting firm serves families by providing solution-oriented advocacy. She pens the special needs column for Children’s Ministry magazine and blogs at katiewetherbee.wordpress.com. Katie & her husband live in Chagrin Falls, Ohio with their 2 children and their dog, Mitzie.

Jolene and Katie are both parents of kids with special needs.

Gracious God, Thank you for the vision and passion and that Jolene and Katie share for helping congregations welcome all of God’s children. Bless their efforts to help connect families into churches so that all may be nurtured and grow in their love of and knowledge of you. Amen

The Unforgettable Gift

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“Knowledge Concept” by Supertrooper from FreeDigitalPhotos.net

O God, you are my God, I seek you, my soul thirsts for you; my flesh faints for you, as in a dry and weary land where there is no water. So I have looked upon you in the sanctuary, beholding your power and glory. Because your steadfast love is better than life, my lips will praise you. (Psalms 63:1-3 NRS)

I was not raised in the church, yet I found God drew me toward the church throughout my life.  It remained for me a place of holy mystery and peace, a place with answers, and a place with people who had something that I needed in my life too. The church was a beacon, drawing me to find what I was missing.

That can pose a challenge when you show up on Sunday with a child with differences.

When we moved to Texas twenty years ago the church we attended was growing quickly.  There were tons of children, but no special needs ministry. Frankly, I was not even aware that a special needs ministry was something  my family needed.  I just knew that we had a child with way too much energy, a child with behavioral challenges, a child who frustrated easily and needed order and structure. I felt overwhelmed at times, looking for answers that remained elusive.

I needed sanctuary in the true sense of the word. I needed a holy dwelling place and a place of refuge. I needed respite and spiritual nurture.

I received all of those week after week, attending the worship service that corresponded with children’s Sunday school. Our son had activities and lessons suited to his age, attention and energy. My husband and I received the spiritual nurture that we craved. The service we attended was the smallest one.  Most other adults went to Sunday school at the same time as their children and then attended worship as a family. There was no way our energetic wiggle worm could hold it together for two hours. Maybe someday, but not then.

No one ever complained about our son and his challenges. At the end of the school year I found out why as the Sunday school teachers prepared the students for “promotion Sunday” to the next grade level.

I was in conversation with one of his teachers, Kathy. “I’ve so enjoyed being with your son this year.  He is such a charming boy and so curious about everything. I’m going to miss him when he moves up a grade, but it will be nice getting back to my own Sunday school class.”

A few more questions revealed the whole story.  Kathy normally volunteered one Sunday a month with the preschool children, maybe a bit extra if a substitute was needed. She gave up her own time with her Sunday school class of ten years to be with our son. She never said a word about it, she just did it because she sensed that was what our family needed.

“He’s a child that does better working one on one with the same person each week. He likes consistency. Sometimes we take a break and go out in the hall where it is quiet. He likes that better than the busy classroom.”

Kathy was the one who offered the gift of sanctuary to me and my family. She gave me the opportunity to be formed spiritually while in worship. She also gave me a true example of Christian caring.

The discernment process within churches creating and equipping special needs ministries often include many steps: prayer, task force formation, focus groups and surveys, recruiting and training volunteers, and more. All doable. All necessary in the long run.  However, we find the true heart of special needs ministry in people like Kathy who are welcoming, who focus on what a child can do rather than what they can’t do, and who use their gifts and graces in a way that brings glory to God and creates disciples by example. In this season of teacher appreciation, I am especially grateful to Kathy and her unforgettable gift.

Nurturing God, Thank you for Kathy and all the teachers who nurture and welcome and make a place for all of your children. Amen

Rev Doc Lorna

Image: “Knowledge Concept” by Supertrooper from FreeDigitalPhotos.net

Confusion About Inclusion

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Help And Care For Disabled Person by Teerapun

People were bringing little children to him in order that he might touch them; and the disciples spoke sternly to them. But when Jesus saw this, he was indignant and said to them, “Let the little children come to me; do not stop them; for it is to such as these that the kingdom of God belongs. (Mark 10:13-14 NRSV)

I wish Jesus had been more specific in his command, “Let the little children come to me.” For some reason it seems to cause a lot of confusion.

That’s right. There is confusion about inclusion.

For some, inclusion means there is a space and activity offered that is appropriate to a particular person’s needs.  For others, inclusion means being in the same room with everyone else doing what they are doing alongside them. The way that individual participates may be different from everyone else, but they are still part of the bigger group.  To my way of thinking, those are both examples of inclusion.  It all depends on the perspective of the individual.

Inclusion is whatever feels welcoming and comfortable to the person who wishes to be included. For some, that means having  a separate space and activities geared to their unique needs.  For others it means jumping in with everyone else and feeling welcomed to do so. If they don’t feel welcome and wanted, then it isn’t inclusive.

Surprisingly, folks can be rather divided on this topic, which I find puzzling. Thinking of my own experiences raising a child with special needs there were times when what others decided was inclusive didn’t feel at all inclusive to us. My son is greatly bothered by loud noise due to life on the autism spectrum. His time in student ministry when they gathered and listened to loud praise music for fifteen minutes prior to breaking into small groups was stimulatory torture.  In his case, being inclusive by saying “just come be part of the group, you are welcome to join us,” didn’t work.  From his perspective, it was like a weekly invitation to listen to fingernails on a chalkboard.  It also triggered obsessive thoughts about hearing damage that were only relieved by taking him for hearing screening. Following the example of Jesus each Sunday morning he went away to a quiet place alone, though in his case it had more to do with sanity than piety. He was welcome as part of the group, but he couldn’t tolerate being there. It really didn’t feel very welcoming despite good intentions. This was a great group of folks. I know they meant well, but…

Wouldn’t it have been nice for him to have company when he left the gathering? Wouldn’t it have been nice to have an alternate activity planned for him and others who share the same spectrum? Wouldn’t it have been nice to have a “non-loud” Sunday every once in a while so that everyone could be welcome as part of the larger group?  Any of those things would have felt much more inclusive and welcoming.

The best way to know what feels inclusive to those we wish to include in the church is to have a conversation and ask them. Then actually takes steps to make the needed modifications so that everyone feels welcomed and included.

This week Key Ministry is hosting Inclusion Fusion. It’s a chance to learn more from leaders in special needs ministry about how to offer inclusive ministries.  Check out this link to get the schedule of free webinars and to register:  www.inclusionfusion.tv. I’m looking forward to this opportunity to get fresh ideas and connect with others who love kids like ours.

Holy God, help us to hear those who ask for change and truly make a place for everyone. Amen.

“Help and Care for Diasbled Person”  Image courtesy of Teerapun at FreeDigitalPhotos.net

Welcoming the Whole Family

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Green Door Mat Image courtesy of Stoonn at FreeDigitalPhotos.net

Welcome one another, therefore, just as Christ has welcomed you, for the glory of God.(Romans 15:7 NRSV)

“There is this family that attends my church and they have a little boy with autism.  I can tell that mom and dad feel really frustrated during worship because he has a hard time sitting still.  We are a really small church, only fifty members. There are no other children there and it’s so nice to see this family in worship. How can we be welcoming to them and make them feel more comfortable?”

As a pastor who has done welcoming ministries for fifteen years, focusing in caring for special needs families in particular over the last five, this question was music to my ears.  I explained to the woman that children with autism are going to have a really hard time understanding social boundaries about sitting quietly.  I suggested that they could work with the parents to have an activity bag for the child at church with things of interest to him. It would be something special that he would enjoy having when he is at worship.  When it got to the “boring part” (i.e. The Message) that is not going to be of interest, the boy could leave the sanctuary with a two buddies who would could lead an alternate Bible activity geared toward his age and abilities. The buddies would be nurturing adults or teens in the child’s life and the parents could enjoy that rare gift called “sanctuary.” They could have the parent’s cell number and send mom or dad a text if there is a problem and they need help.

The congregation member was nodding all along and agreeing these were great ideas. But then she asked, “Well, who is going to do all that?”

“I believe you mentioned that you have 50 members at your church.”

Blank stare.

I let it hang there. Still just a blank stare.

“Well, I’ll just show the mom where the cry room is located. She’d probably prefer to leave.”

I think we have the answer about why this is a small church and there are no children.  Sorry. I don’t mean to be harsh, but welcoming families means you are excited they are there. Excited enough to make an effort to include them as part of your church family. Rather than deciding for them what they would prefer, ask them. Rather than leaving them floundering in worship and frustrated, help them.

How do we create a church environment that is welcoming?  It’s simple really.  How do we welcome guests in our homes?  When we know someone is coming for a visit we get ready ahead of time.  We prepare the house, find out what folks like to eat and drink, plan things our guests will enjoy doing. We greet them with eager anticipation, “I’m so glad you are here! I’ve been looking forward to seeing you.” Then we show love and hospitality for our guests by trying to make sure they have a good time.

Church isn’t any different. Welcoming takes an intentional effort to be ready for the ones who are coming.

  • Prepare the house. Back to basics time. Is the church building accessible?  Is there a wheelchair ramp? Elevator? Accessible restrooms? Can people get into the building and navigate the hallways easily? If your congregation wants families with young children to be part of the body of Christ, anticipate their needs and prepare for them.  Children of all ages get bored in worship. Activity bags with scripture lessons, crayons, magnetic erase sheets, pipe-cleaners, and other quiet activities are great ways to keep kids engaged in worship at their own level.  Children with special needs are no different.  They want something to do. Modify as appropriate for their particular developmental capabilities.
  • Prepare the congregation. Often children with special needs do not understand boundaries and they make noise. Church leadership needs to model that is okay. I recall one sermon in which a young man was becoming agitated. Though non-verbal, he was loud at times.  Heads were turning. The pastor saw the parents were distressed and said, “That’s okay Cameron. This passage gets me upset too. I feel you buddy. You aren’t bothering me.”  The whole room was put at ease. Years later I cannot recall the sermon at all (nor any other sermon preached years ago!), but I can recall the radical hospitality of offering grace for a bit of disruption.  The Holy Spirit on Pentecost was pretty disruptive too, with the tongues of fire and all that.  I think church services can use more disruption.  A fine prayer, “Please God, let something happen today that isn’t printed in the bulletin.”
  • Learn from your guests. Have conversations with the parents and ask them what their children like to do and what is appropriate for them. For some parents, inclusion means finding a way for their child to be in worship with them. Perhaps they would like to be partnered with a buddy in worship who will keep their child engaged so parents can be more fully present to the sermon, etc. For some families, what feels inclusive is having a place that is geared to their child’s particular needs and is apart from the sanctuary. Either way, intentional conversation and a volunteer to work with the family says to them, “We are glad you are here and want you to be comfortable.”
  • It takes heart. There are plenty of resources for developing comprehensive special need ministries. Books by Erik Carter and Amy Fenton Lee are great starting points for practical ideas to get a ministry up and running.  The main ingredient is heart. It takes people who love families and want to be offer a welcoming place for them.  That’s it.  If you care, they will come. The biggest stumbling block to starting special needs ministries is fear. Congregations can “what if” themselves into a corner, frozen by concern of not being ready for every single possibility that may come their way. Having a heart for welcoming wins out over fear every time. Families that come don’t expect everything to be perfect.  We understand plenty about “not perfect.” We live it every day. What we want is a congregation that cares that we have come to church and wants us to be there even though we don’t fit the mold of the typical family.

I’d love to hear from parents about what works for you and makes you feel welcome at church.  Please post in the comments about your favorite experiences.

Welcoming God, we thank you that you call each of us to be in relationship with you.  A times it is hard to find a place that understands and prepares for the unique needs of our families.  Yet we know that what you call us to do you also equip us to do.  Open the hearts and minds of yet more congregations about ways they can welcome everyone who comes to worship you.  Amen.

“Green Door Mat” Image courtesy of Stoonn at FreeDigitalPhotos.net

Easter: It’s All in the Seeking

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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.