Review: Not Worth Saving

Special Needs Parenting, , , ,

Not Worth Saving Cover

From the first page of her memoir, Ann Joyner invites the reader into an intimate story of love, triumph and loss as she shares the story of her son, Matthew.  When Ann’s second pregnancy was very different from her first, her mommy instincts told her something was wrong. Her medical journey took her from doctors dismissing her concerns, to a diagnosis in her third trimester that Matthew’s was “not a life worth saving.” Told that Matthew was not likely to survive more than a few days at most after he was born, their post-natal plans included planning a funeral.

Learning that doctors are not God, Ann held on to scripture, Matthew 19:26 “With God, all things are possible.” Matthew proved God had plans for him. While Matthew struggled with fragile health due to a rare genetic abnormality, Ann and Jerry were faced time and again with a haunting question:

“How do you watch your child die? The answer we discovered is, you don’t. You watch your child live, however long that may be.”

Joyner 1This poignant story shares the faith journey of the family discovering God’s grace and everyday angels in the midst of their lives. Page after page shares stories of help just when it was needed, answered prayers, and improbable heroes. Key among them was her battle for medical coverage:

“Your son’s condition was diagnosed in utero, while you were pregnant with him. Therefore, all of his claims have been placed in the category of pre-existing. He had all of these problems before he was born. Your son has no medical coverage.”

Joyner 2Ann has a gift of story-telling, coupled with a strong faith that welcomes the reader into her life as if you are a long-lost friend and she is catching you up on the details. Especially poignant to me is the story of Matthew’s relationship with his older brother Drew. Parents of children with special needs often feel guilt or worry about neglected siblings who are short-changed in the midst of life with special needs. Understanding and appreciating Drew’s unique relationship and fierce loyalty to his brother is a welcome message of hope and love.

 

For any parent looking for a story of inspiration, faith and hope in the midst of the journey with special needs I recommend Ann Joyner’s, Not Worth Saving.

Saving God, Thank you for the Joyner family and their openness in sharing their lives. May otyhers be inspired by their story of unconditional love.  Encourage Ann in her minsitry that makes space for all of God’s children. Amen

annjoynerphoto

Bio: Ann Joyner, author of Not Worth Saving, proved with a two-year secretarial degree that a passionate, determined, and stubborn mother, who asks for God’s help needn’t have an MA, PhD or MD to turn a life “not worth saving” into one that touches and saves thousands of others.  Filled with the desire to show that each life has unlimited value, Ann has delivered the message in several worship services, shared with Book Groups, Sunday School Classes, UMW Gatherings, workshops, and was Keynote Speaker at a luncheon benefiting those with special needs.  Last Spring, Not Worth Saving was named to the 2016 United Methodist Women’s Reading List.

Rev Doc Lorna

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Interview: Author Ann Joyner

Special Needs Parenting, , , , , , ,

Not Worth Saving Cover

While presenting workshops at the 2015 Leadership Institute at Church of the Resurrection in Leawood Kansas I had the opportunity to get to know one of my fellow presenters and special needs ministry advocate Ann Joyner, also known as Matthew’s Mom. I had the opportunity to visit with Ann  and learn more about the life of her son and the importance of her faith in the midst of the journey with special needs.

What inspired you to share the story of your son Matthew?

When I was 7 months pregnant, told the baby I was carrying was a life ‘Not Worth Saving’ and would likely be stillborn or die shortly after birth, I was totally devastated.  I searched for an answer to the obvious question: How in the world can I do this?  There was not a guidebook, another parent’s story, a medical paper offering encouraging words – nothing.  There was absolutely nothing which offered insight to how I could deal with what I was facing.  Every step in Matthew’s twenty-one year miraculous journey provided me with a wealth of knowledge and experience which I ultimately felt called to share.  Our story is for people facing overwhelming adversity, people who are in search of hope and joy.

In the midst of raising a child with extreme challenges you also were part of creating special needs ministries at two churches. How did you find the energy to follow through with that vision?

My energy to follow through on visions for ministry was fueled from my belief that I could be a victim or victor, a choice everyone has.  When faced with the option to either leave a church because our family no longer fit, or create an appropriate program for Matthew, God gave me the direction, encouragement and energy I needed to press on.  God showed me that it was not just about my son, it was about all those like him.  When faced years later with helping to begin another ministry for people with special needs at a young start-up church, I was again reminded that it was not just about our son.  Pastor Adam Hamilton felt like Matthew’s arrival and presence was God calling his small, new congregation to minister to all those like him.  Almost twenty-two years later, Church of the Resurrection has one of the largest ministries for people with special needs and I am proud it is called Matthew’s Ministry.

What has your faith community meant to you throughout Matthew’s lifetime and beyond?

My faith community encouraged my family to give to others – to teach, to lead, to minister, to share our gifts.  They encouraged us to look outward.  If we did not, we were destined to drown in a sea of self-pity.  Because my family was engaging and approachable while putting ourselves ‘out there’, we were attractive, even though our family was far from typical.  Our faith community empowered us to live lives filled with meaning while making a difference in other people’s lives.  We were not focused on simply existing.

Joyner 3Matthew continues to touch and change lives today in many ways. Thinking back to when you were the young mom in the midst of the shock of diagnosis, what guidance do you offer families?

When initially faced with the unfathomable diagnosis Matthew had, I turned to the church.  Without God in my life, it would have been impossible to live a life filled with joy.  With Him in my life I found joy abounding, everywhere I turned.  I gave thanks for what I did have with Matthew; not dwelling on what was lost. The most important lesson I learned is that every single day is a gift. I encourage people to try not to worry about too many tomorrows. If you do, you will rob yourself and your family of the joy God has in store for you today.

annjoynerphotoBio

Ann Joyner, author of Not Worth Saving, proved with a two-year secretarial degree that a passionate, determined, and stubborn mother, who asks for God’s help, needn’t have an MA, PhD or MD to turn a life “not worth saving” into one that touches and saves thousands of others.  Filled with the desire to show that each life has unlimited value, Ann has delivered the message in several worship services, shared with book groups, Sunday School classes, UMW gatherings, workshops, and was Keynote Speaker at a luncheon benefiting those with special needs.  Last spring, Not Worth Saving was named to the 2016 United Methodist Women’s Reading List.

Rev Doc Lorna

Is it Funny Yet?

Special Needs Parenting, , , , , , ,

Laugh or Cry Signpost by Stuart Miles

“Blessed are you who weep now, for you will laugh” (Luke 6:21 NRS)

I opened my door to welcome guests coming for dinner on Christmas Day and was greeted by the saddest face.Naughty Russell

“I know this will be funny someday, but I’m not there yet.  You know the dessert I offered to bring? The one that your husband will love and that I spent hours making?”

I looked about and noticed she wasn’t carrying anything…

“Well, the dog jumped on the counter and ate the whole thing while I was drying my hair.”

I found the latest episode of misbehavior by Russell, the large overly-enthusiastic mixed breed puppy, to be quite amusing. She and her husband got there eventually.

A mother of a medically fragile child shared with me that in her home humor has become the gold standard of how well they are coping. “Is it funny yet? If it’s not funny yet, then you know it’s bad.”

Truthfully, humor does surprise us at odd times, times that are so out of sync with whatever is going on at the moment we feel a little, dare I say, nutty. A little twinge of guilt reaches up and tugs your sleeve, “You shouldn’t be laughing,” it whispers, “What’s wrong with you?”

Well, nothing.  Laughter is part of coping. A proverb wisely notes, “Even in laughter the heart is sad, (Proverbs 14:13 NRS). I recall watching Saturday Night Live when it went back on the air after September 11, 2001. The iconic New York City show at the heart of the greatest grief of the nation opened with first responders standing near Paul Simon as he sang The Boxer.  SNL producer Lorne Michaels asked of New York City Mayor Rudolf Guliani, “Can we be funny?” To which the mayor relied, “Why start now?” There is a line between grief and humor. When is it okay to cross it?

Laughter is a healing balm, even when it pops up at odd times. Jesus promises, “Blessed are you who weep now, for you will laugh.” (Luke 6:21 NRS) It is okay to be surprised by humor in the hard places.

One of the dearest memories I have of my grandmother’s final days were of her organizing her own funeral. A detail person to the end, she had everything prepared exactly how she wanted it. She laid back in her hospital bed, a look of contentment spread across her face. “Oh! It will be lovely! When is it going to be?”

Awkward sideways glances passed between my mom and her sister. My mom apparently drew the short straw, “Well, Mom, that is sort of up to you. You know. Whenever you, um, get around to it.”

Everyone burst out laughing.

There are some things in life that will never, ever, ever be funny. But the gift of a little humor in the hard places helps us get through.

Healing God, Thank you for the gift of laughter that surprises us in unexpected ways. Thank you for tears of joy and laughing until our stomachs hurt and we can’t breathe. Thank you for healing us when our hearts hurt and we need relief. Amen.

Rev Doc Lorna

Photo “Laugh or Cry Signpost” by Stuart Miles Courtesy of FreeDigitalPhotos.net

I Can and I Will!

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Let us run with perseverance the race that is set before us… (Hebrews 12:1 NRS)

Family hikingA few months ago I introduced my readers to Elizabeth Elder and how her journey of self-discovery and acceptance in the midst of raising kids with special needs inspired her to run a marathon.  You can read that original post by clicking here to learn more about Elizabeth’s story.

After just a few months of training in the heat and humidity of a record-breaking Houston summer, this Sunday, November 1 Elizabeth will tackle the NYC Marathon in honor of her children Blaire and Annabelle. She is also raising awareness and funds for Achilles International, an organization that enables people of all ages with disabilities to participate in athletic events.   Here is the latest from Elizabeth:

Hard to believe, but the countdown is officially on…. 4 days until I cross the finish line in NYC! First of all, I just want to thank all of you for your support and words of encouragement. I can’t tell you how much that has fueled me throughout my training! I recently ran my peak run of 23 miles and felt great! I am feeling confident and able to now focus on the last minute (fabulous) details!


As you may recall, I originally pledged $3,000, but because of YOU, we blew right past that and now have $16,000 on the horizon!!! OMGGM (Oh my goodness grateful me)! Now for the fun part, you know I can’t resist adding a little extra flair! During my training, I relied so much on what became my mantra “I CAN and I WILL” that I decided it would be neat to have the words “I CAN” on the top of my left hand and the words “I WILL” on the top of my right hand so I could have my own little inspirational words right there when I needed them. Only problem is even a brand new black sharpie wouldn’t outlive 5 hours of blood (hope not), sweat, and tears of joy. So I needed tattoos (take a breath, Mom. They’re temporary). Long story short, I now have 500 sets of “I CAN” and “I WILL.” 

I Can and I WillWhat to do with 500 sets of tattoos? I’m giving them to other Achilles athletes and supporters to wear with me on November 1st. Arms crossed over the chest is an international symbol of love. It’s also how Annabelle and Blair first learned to say “I Love You.” With tattoos in place, and arms crossed, we can share the lesson I have learned…. Say “I CAN” and you inspire yourself. Say “I WILL” and you inspire others.

Once again, thank you for being in my corner. My family is truly blessed to have such an amazing, strong, beautiful group of people cheering us on!

I and a group of courageous moms from Elizabeth’s Tuesday morning parent connection will be sporting our “I can” and “I will” tattoos on Sunday while we use technology to track Elizabeth on her 26.2 mile journey. If you want to track her progress along with us, here is a link explaining how you can download the NYC Marathon runner tracking app.

I hope my readers will join me in wishing her well and prayers for a successful journey, both physically and emotionally. You can learn more about Achilles International, a charity for children with disabilities and war veterans, here: Achilles International

Enduring God, Bless Elizabeth and the whole Elder family on their journey. For Elizabeth, and all parents running their own personal marathon with special needs, offer your strength when there is fatigue, guidance when the way is unclear, and hope in all things. We can and we will, because through you all things are possible. Amen

Rhythms of Grace

Autism, Special Needs Parenting, , , , ,

Rhythms of Grace

When a mom came up to me after worship with tears in her eyes, my first reaction was, “Oh no! What happened?” Far too often I hear stories of worship failures for kids with special needs, but this was different.  We were at Rhythms of Grace, a worship service for families with special needs.  I expected that day to be a big success for everyone and I was not disappointed.

“My son just took Communion for the first time! I never felt I could take him before, but he did it. I’m so proud of him!”

Wow! The tangible presence of God’s grace in the elements of bread and wine with no barriers or road blocks. What a gift!

Celebrating First Communion

Mabel 2 (1)

Rhythms of Grace is an inclusive service that is the shared vision of Lisa Puccio, Coordinator for Special Needs Worship and Rector Jimmy Grace. The two launched the service in November of 2010 at Christ Cathedral Episcopal Church with the vision that it would move among four churches on alternating Sundays. As partner churches left over time, the service was simply held monthly. With a vision for a weekly service in one location, when Rector Jimmy Grace was appointed to St. Andrew’s Episcopal Church in The Heights in Houston, that vision became a reality. With a strategic mission grant from the archdiocese and enthusiastic support by the local congregation, Lisa made the move to St. Andrew’s as well and the Rhythms of Grace launched weekly on February 1, 2015.

I enjoyed attending on a Sunday afternoon with parents and children from a support group that I lead. Numbers vary from ten up into the forties, with a strong volunteer base to help direct the energy of participants. As worship began with music and story time, one boy got up and pounded on the stair rail. Another felt overwhelmed and moved to the back of the room wearing his ear defenders to reduce sensory input, another got the giggles and scooted in spiraling circles in the middle of the floor among the other worshipers.  No one was bothered by behavior. No one was shushed.  We’d all been there. There was space for all of that energy without sideways glances. How refreshing!

The service flowed from our time gathered in a circle on the floor to a variety of activity stations set up around the room. Painting, coloring, sorting were among several activities that children could choose, selecting activities that matched their strengths and interests.  Each activity tied to the scripture lesson of the day. At the end of the time of exploration we gathered again for music and Communion. Watching Rev. Jimmy Grace go around to each family one by one and offer Communion was a visible reminder that God’s grace is freely given and open to all. We do nothing to earn it, but rather we simply need to accept it.

Rhythms of grace 3

Rhythms of Grace is well-named, matching the worship style to the rhythms of the lives of the participants, all the while celebrating God’s unconditional love for all people. While a few participants are members of St. Andrew’s, this unique style of worship has brought in many people from outside the congregation. It has created an outreach opportunity for what is the most basic of gifts a congregation has to offer, a place to belong while experience God’s unconditional  love in connection with others.

If you would like to learn more about this unique service, visit their website here and get in touch with Lisa Puccio for more information.

Gracious God, thank you for the vision of Lisa and Rev. Grace for offering this unique worship opportunity. Continue to guide their vision for opening the church to families with unique circumstances so that all can be part of a nurturing and supporting community. Thank you for surprising gift of a first Communion that was uniquely times to your rhythm of grace. I pray that all families looking to know you and be part of a faith community find a home as full of blessing as St. Andrew’s. Amen

Rev Doc Lorna

When Birthdays Don’t Feel so Happy

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“Two Year Old Birthday Party” by Stuart Miles

A group of moms can sure go through the tissues when talking about birthday parties. We gathered on a sweltering Houston day talking about unexpected grief. Parent after parent shared the heartache of birthdays. Wondering if a child will still be here next year. Hoping for developmental milestones that still go unfulfilled as the calendar marches along. Then there are those expected party guests who never arrive.

That last one is really tough.  Birthdays are about who shows up to celebrate with us.

Two thousand years ago a couple traveled to a faraway city for a Roman census.  It was home to the relatives of the man, but no one welcomed them. How can that be when it is his ancestral land? Surely some close kin must have still lived there and would have had some way to squeeze in their relative and his pregnant fiancé, but sometimes even relatives don’t show up when we need them.  Perhaps the scandal of the pregnancy kept folks at bay? Perhaps the couple was so used to rejection they did not even ask? We don’t know why, but we do know they felt their only option was a room for rent, and none were available.

Tradition is clear about who is expected to celebrate the birth of a baby. Family and friends ought to be there. They weren’t present that day, but there were others, unexpected guests who celebrated the good news.

“Let us go now to Bethlehem and see this thing that has taken place, which the Lord has made known to us.”

So [the shepherds] went with haste and found Mary and Joseph, and the child lying in the manger. When they saw this, they made known what had been told them about this child; and all who heard it were amazed at what the shepherds told them. But Mary treasured all these words and pondered them in her heart. (Luke 2:15-19 NRS)

Then later there were other unexpected guests who traveled a long way.

In the time of King Herod, after Jesus was born in Bethlehem of Judea, wise men from the East came to Jerusalem, asking, “Where is the child who has been born king of the Jews? For we observed his star at its rising, and have come to pay him homage.” (Matthew 2:1-2 NRS)

And there, ahead of them, went the star that they had seen at its rising, until it stopped over the place where the child was. When they saw that the star had stopped, they were overwhelmed with joy. On entering the house, they saw the child with Mary his mother; and they knelt down and paid him homage. Then, opening their treasure chests, they offered him gifts of gold, frankincense, and myrrh. (Matthew 2:9-11 NRS)

There were plenty of things about that birthday that must have been disappointing to Mary. Giving birth to her child in the midst of the chaos of no housing certainly wasn’t in her plan, nor when she was so far away from home. The friends and family she pictured simply weren’t there for her that day.

But others were. Even in the midst of what must have been painful disappointments, there were blessings and support from unexpected places. These were the things that Mary treasured.

Loving God, Birthdays can be such a bittersweet mix. They are cause for celebration, and yet can be painful reminders of differences. Help us to celebrate with joy the blessings we have in our children. Open our eyes to the true gifts, those unexpected ones mixed in among wrapping paper, cake and balloons. We give thanks to you for the shepherds and angels you send to us each day who see beyond this world to be the people of your kingdom that you call us to be for each other. Help us follow Mary’s example, treasuring the best and letting go of the rest. Amen

Rev Doc Lorna

“Two Year Old Birthday Party” by Stuart Miles COurtesy of FreeDigitalDownloads.net

Sonflower Bakery: A New Vision For Special Needs Adult Ministry

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

Sonflower Cakepops

The Church of the Resurrection in Leawood Kansas didn’t set out to start a special needs adult day program, but recognition of the needs in the community coupled with a bit of inspiration has given rise to a unique community for adults with cognitive impairments.

More than six years ago, Jennifer Ross, Director of Matthew’s Ministry special needs program, recognized the church needed to create opportunities for adults with cognitive impairments to share their gifts with the church. Young adults were graduating from public education with no job opportunities and no programs in the area uniquely suited to their needs. Mostly they were home all day with little to do. This also meant caregivers had limited respite.  She found ways to support caregivers while putting the gifts and abilities of adults to use at the church collating bulletins, sorting items collected for mission outreach, and more.

Then came the suggestion, “Let’s bake cookies and sell them to the staff at lunch time!”  While this may sound like an impossible task given that the ministry is housed in a church with no kitchen, Jennifer thought outside the box, “There was company selling frozen cookie dough. We bought three cases and the church got a small convection oven for free. Problem solved!”

That oven was never actually used to bake cookies.  When Jennifer shared her plan with a church member, that person knew of a grant that was available and suggested she apply. Within a few weeks, Sonflower Bakery had received a grant that allowed them to purchase everything they needed to create a small warming kitchen and a new ministry was born.

Sonflower Bakery

“Congregations often feel that they can’t offer ministry opportunities due to budget, but there are plenty of grant opportunities available.  Even if we had stayed the original model, the ministry created an opportunity to use the gifts of people who want to give back and help others.”

Sonflower Bakery began by baking cookies to sell in the café on campus, but has also become a vital tool in outreach to the community.  When Church of the Resurrection broke ground for new construction, Sonflower Bakery created 300 gift boxes of cookies and delivered them to local area businesses in order to be good neighbors in the midst of dust and disruption.

Over the past six years, Sonflower Bakery has grown from a few boxes of dough to selling over 100,000 items a year, including cookies, muffins, bread and more. Along the way, it also grew to become a full adult learning program with 23 participants.  Per the budget, there is a nominal fee for participants and the overall church budget covers any shortfall they may have across the year.  Participants bake cookies three days a week.  Other days they have a keyboard music program, ring handbells and perform throughout the community, participate in yoga, partner with the sewing ministry to create fleece pillows and blankets for homeless people in Kansas City, and pack backpacks with food so that under-privileged children have meals for the weekend when they leave school on Fridays. Anywhere from three to ten volunteers per day help keep the program running smoothly, along with Joan Baird, who is the coordinator for this thriving ministry.

Joan Baird

This well-rounded adult day program responds to the social, physical and spiritual needs in the lives of participants.  Most important, the gifts and abilities of everyone are recognized and valued. As an added bonus, caregivers receive some much-needed respite. When lead pastor Adam Hamilton says Matthew Ministry special needs ministry and the Sonflower Bakery are his favorite ministries of his church, it’s easy to tell he is sincere. After experiencing two days as part of the ministry myself, they have a special place in my heart, too.

If your congregation would like more information about starting an adult program, you can learn about Matthew Ministry and Sonflower Bakery by clicking here and here, or contact Jennifer Ross or Joan Baird at COR.org.

Equipping God, Thank you for equipping Jennifer and Joan to respond in creative ways in developing a ministry that recognizes the gifts and abilities of all people.  Bless them with energy and vision for following where you lead. Bless the ministry participants and volunteers in their unique community that blends gifts and service all to your glory. Amen

Rev Doc Lorna

Employing Adults with Special Needs: ReAwarding Work

Special Needs Parenting, , , , , , ,

Trophy Master 1

Last week I wrote about advocating for our children with special needs.  If you missed the post, you can read it here. Today I want to share an inspiring story of two parents who are passionate about advocating for employment for adults with special needs.

Two years before their son Mark graduated from high school, Pete and Sharon Meaden had a conversation about his future.  Mark has a great aptitude for computers, but has deficits in other abilities due to cerebral palsy that made it hard to find a job.

“Bagging groceries and stocking shelves are fine jobs, but many of the kids coming through modified educational training have other interests and abilities. Some of the positions that are traditionally thought of for kids like Mark, he just can’t do physically.  At times there are behavioral challenges that require supervision. He worked so hard to acquire technical skills in school. We didn’t want him to lose those by graduating to the couch and playing video games all day.”

Pete and Sharon set about finding alternatives suiting their son’s gifts which led them to start their own business. Revived Glory Awards refurbishes old trophies and creates new ones for a variety of sports events and more.

“I knew so many friends with shelves full of old soccer trophies, basketball, baseball, you name it.  Kids work hard for those treasures and no one wants to throw them away, but eventually they end up just taking up space and collecting dust.  I got to wondering if I could start a business recycling old trophies and creating new ones.”

A bit of market research and emails to a network of friends yielded a basci business plan and plenty of stock to get started. Mark became the first trophy master employed by Revived Glory Awards, disassembling, sorting, and creating an inventory list.  Sharon set about getting orders for new trophies, which Mark assembled, and a new business was born.

Housed in the home garage, Revived Glory Awards now employs six trophy masters, ages 20-50, and a variety of volunteers to assist. “Each trophy master has particular gifts to share. Some are good at assembly, others at engraving. The real gift comes in the sense of community. They care about each other and have a true team spirit. For some, their time at Revived Glory is their main social outlet of the week.” Some trophy masters need one on one supervision and others are more independent. Finding volunteers has never been a problem. “Our volunteers love their time with our trophy masters, even saying it is the highlight of their week and a time when they know they are doing something that truly makes a difference.”

Trophy Master 3

Trophy Masters Celebrate “Bring-your-Sibling-to-Work” Day

Business is booming! In addition to trophies, they create beautiful engraved cutting boards and other products as well. To learn more about Revived Glory Awards click here. The Meadens are looking to expand from their garage into retail space, but that isn’t the end of their vision. “It would be great to become a non-profit and be able to create a residential program so there could be ongoing community. Some trophy masters would still be part of a day program, but others could live on site and have care and companionship, a place to belong.”

I asked Sharon what is one piece of advice she has to offer to parents of adult children who are at risk of falling through the employment crack after graduation. “Our young adults have so much potential. Those who know them best know their gifts. Find what they do best and think outside the box for how they can use their skills. Help them find what suits them or create it yourself. It really wasn’t that hard to do.”

Glorious God, Thank you for blessing Pete and Sharon with the gift of inspiration and vision for creating a place of community and employment for trophy masters.  Bless them in thier growing opportunity to reach out to yet more young adults who are lookng for a job and place to belong. For parents feeling anxious about the future beyond high school, calm their fears and create a fresh vision for possibilites. Open pathways of connections so that the gifts of all of your children are shared in meaningful ways. Amen

Rev Doc Lorna

The Advocate: Three Tips for Getting Services for Your Child with Special Needs

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Advocate

As I sat listening to the experiences of special needs parents as part of a panel discussion offering resources, I recalled the parable of Jesus:

He said, “In a certain city there was a judge who neither feared God nor had respect for people. In that city there was a widow who kept coming to him and saying, ‘Grant me justice against my opponent.’ For a while he refused; but later he said to himself, ‘Though I have no fear of God and no respect for anyone, yet because this widow keeps bothering me, I will grant her justice, so that she may not wear me out by continually coming.'” And the Lord said, “Listen to what the unjust judge says. And will not God grant justice to his chosen ones who cry to him day and night? Will he delay long in helping them?

(Luke 18:2-7 NRS)

The widow in Jesus’ story was the advocate who would not give up. She returned again and again, asking for what she needed until she received it. How often do we do that as parents? Pretty much continually with insurance, school accommodations, state and federal agencies, and more. I looked out from the panel table at a gathering of earnest advocates seeking advice of how to best advocate for the needs of their children. They received sage advice from Denise Briley of Thru the Roof Ministry at Houston First Baptist Church. She successfully navigated the waters of receiving services for her medically fragile son. Here are some of her insights:

Be persistent! As a family who was an early pioneer in keeping home a medically fragile child rather than institutionalizing, the Brileys fell through the cracks of programs that should have provided support. When denied by an agency she told the person on the other end of the phone, “I just want you to know I am going to call you every day at 1:00. I look forward to talking to you again tomorrow.”  And she did. Every day. For 59 days.  On day 60 her phone rang at 12:59, “Mrs. Briley, I have some wonderful news…”

Be prepared! Do the research. Ask questions. Document everything. If there is more than one local agency office that could provide services, find out which office is the most compassionate and helpful. Show up in person with your child. Denise shared a marvelous story about taking her son to the local agency office and then on to the main office in our state capital. “Oh Mrs. Briley, you didn’t need to bring your son.” “Well, as a matter of fact I did because I have no respite help to care for him and he clearly cannot be left alone.” Her burgeoning bag with medical equipment was an ample testament to his needs, with every machine that beeps set to max volume. Seeing, and hearing, is believing! “Mrs. Briley, clearly there has been a mistake in the respite decision…”

Be patient! It takes time. Prepare to hear ‘no’ many times. If a cover letter was missing, submit again. If a box wasn’t checked, check it and re-submit. Eventually there may be a ‘yes.’ And, while patiently working through the system for a ‘yes’, don’t feel like you have to pretend that you have it all together.  Obviously, don’t berate the person who is there to help you. But if it is a rough day don’t feel the need to hide your discouragement, tears, and anxiety.  Policies often have grey areas of interpretation and real people with real emotions interpret those policies. Let them see that you are human because they are too and it could help build a bridge to the services you need for your child.

Jesus’ parable is of an unjust judge. The good news is that our God is not an unjust God, but rather a God who hears our prayers and has sent The Advocate on our behalf.  Jesus told his disciples in his final evening gathered with them in the upper room:

 I will ask the Father, and he will give you another Advocate, to be with you forever. This is the Spirit of truth, whom the world cannot receive, because it neither sees him nor knows him. You know him, because he abides with you, and he will be in you. (John 14:16-17 NRS)

Truly, as parents we are strengthened as advocates because the ultimate Advocate is with us.

Holy Advocate, thank you for aiding us in seeking justice and services for our children. Strengthen us when we feel weak, renew us when we feel tired, freshen our perspectives when we are discouraged, and soften hearts so that we hear a “yes” for our children who are made in your glorious image. Amen

Rev Doc Lorna

Review: Every Child Welcome

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Philo Weatherbee

Last week I shared with my readers an interview with Jolene Philo, co-author with Katie Wetherbee of the new book Every Child Welcome: A Ministry Handbook for Including Kids with Special Needs. This truly is a wonderful new resource for any children’s ministry team that wants to create an inclusive welcome to families with special needs, while at the same time equipping ministry leaders to be confident in their ability open the doors to all of God’s children.

Like expert guides, Jolene Philo and Katie Wetherbee gently lead the reader along the pathway to creating an inclusive ministry for children. From casting a vision for ministry all the way down to detailed strategies in the classroom, Every Child Welcome sets out a clear and easy to follow process for staff and volunteers alike.  The writing is clear, accessible and engaging with years of expertise in the field apparent on every page.  Any church with a goal to welcome all children and their families will be blessed by the abundance of wisdom contained within the pages.

Set in the metaphor of receiving guests for a dinner party, the authors create a comprehensive plan for welcoming children. Just as any good meal begins with planning and preparation, so too does creating an inclusive children’s ministry. Step by step, staff and volunteers are prepared with thoughtful consideration of how best to receive children by creating welcoming space and activities. With a clear understanding that not every volunteer has a background in special education, nor even in teaching, Philo and Wetherbee provide practical advice that is clear and concise. Their suggestions are both creative and adaptable to a variety of settings. This is a “go to” resource that I imagine children’s ministry teams referring to again and again.

Chapter topics include all parts needed for an inclusive welcome: preparing the space, preparing the children to learn, teaching the Bible, activities to enhance learning, ideas for holidays, and more. In addition to offering multiple strategies in each chapter, there are also suggested resources for children’s ministry teams who want to learn more. Readers can also connect to the author’s blogs for ongoing articles and tips on creating an inclusive ministry.

In other news…

I recently shared the story of Elizabeth who is new to long distance running and training to run the New York City Marathon this November.  I’m happy to let you know training is going well and she has already conquered a 16 mile long-run in the sweltering Houston heat and humidity. She is on target to be ready to cover 26.2 in November.  Also, she has already raised over $7,000 for Achilles International in honor of her children. And, I saved the best for last, her children with a rare genetic mitochondrial disorder are responding well to their new treatment and reaching new devlopmental milestones that used to seem impossible.  You can read more about Elizabeth’s inspiring story here: http://bit.ly/1I5odhg.

Gracious God, thank you for the gift of Jolene and Katie who inspire and equip others to reach out to families with special needs.  Guide ministry leaders to encourage their teams to create ways to include all children who come to be taught by them and to know you. Continue to guide and bless Elizabeth and her whole family on their journey of self-discovery of new abilities being revealed every member of the household. Amen

Blessings,

Rev Doc Lorna