Monthly Archives: September 2015

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

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

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

Great, New Resource for Churches!

Special Needs Parenting, , , , ,

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

Feeling Impatient to Become More Patient

Special Needs Parenting, , , , ,

Sandra Peoples at Not Alone Minsitry invited me to write a blog sharing tips for improving patience from my book Special Needs Parenting: From Coping to Thriving.  You can read that original blog by clicking here, or read the repost below.

“Meditation By Young Women” by tiverylucky couresy of FreeDigitalPhotos.net

“Love is patient; Love is kind.” 1 Corinthians 13: 4a

The irony did not escape me.  Years ago at the first session of a six-week support group I outlined the topics I planned to cover.  Then I offered that if there were other topics folks would like to discuss we could add those as well. I decided to grease the skids of the group’s creative thinking by offering some suggestions, “We could talk about siblings, resilience, patience…”

“Yes! Patience! I need that!” one participant exclaimed.

“Me too!”

“Same here!”

I offered, “Would you like me to rearrange lessons and do that one sooner rather than later?”

I got an enthusiastic, “Yes!” from every participant.

Why so impatient to talk about patience?  Maybe because it is something that is hard for everyone. Virtually every special needs parent I know has commented about how they have more patience than they ever thought possible, but that they also wished they had even more.  Patience encompasses so many aspects of life related to parenting a child with extraordinary needs.  Coping with insurance and the medical minefield, scheduling therapy, the (for some) unending quest for diagnosis, and over-committed schedules all contribute to a losing patience.  Is chronic lack of sleep a familiar companion? Let us not forget the “homework wars” looming large right around the corner with the new school year.  Any one of these reasons, plus many others as well, may push patience to the breaking point if reserves are low.

As Christians, we are meant to strive for patience. It is a virtue to be cultivated. The Apostle Paul writes of patience in several of his letters to churches he founded or planned to visit. In his letter to the churches in Corinth, he expounds on the characteristics of love. The first attribute of love is that “love is patient” (1 Cor. 13:4). Paul writes to the churches in Galatia listing the fruit of the Spirit, the qualities cultivated in your life when living as a follower of Christ filled with the Holy Spirit, “By contrast, the fruit of the Spirit is love, joy, peace, patience, kindness, generosity, faithfulness, gentleness, and self-control. There is no law against such things” (Gal. 5:22–23). To the Colossians he writes, “As God’s chosen ones, holy and beloved, clothe yourselves with compassion, kindness, humility, meekness, and patience. Bear with one another and, if anyone has a complaint against another, forgive each other; just as the Lord has forgiven you, so you also must forgive” (Col. 3:12-13).

Paul writes of the importance of cultivating patience because even two thousand years ago people struggled with patience. I suppose some comfort comes in knowing it is a universal area for personal growth, but how do we cultivate it? How do we learn to become more patient people, especially in the midst of long-term stress and difficulties? When I think of what it feels like to lose my patience, there comes a tipping point and beyond that patience is broken.

In my book, Special Needs Parenting: From Coping to Thriving, I included a chapter about patience that includes strategies about unlocking each person’s triggers for losing patience.  Here is an excerpt from the book offering a few strategies to combat those triggers:

Breath prayer/mantra. Breath prayer involves picking a word or short phrase and repeating it silently or aloud in conjunction with the pattern of breathing. Breathe in to the thought “Love is patient.” Breathe out to the thought “Love is kind.” Alternate phrases include: “Breathe on me breath of God,” “Create in me a clean heart,” or “Let there be peace.” Any phrase that is peaceful and centering for you is appropriate to use in those moments when patience is at the breaking point.

Exercise. There are physical symptoms that come before a loss of patience: fidgeting, tensed muscles, some describe a tingling sensation. Hard exercise releases pent-up tension. Make regular exercise a part of your routine. In the heat of the moment, if appropriate, do some push-ups, crunches, or lunges. Run around the block. Play racket ball against the garage door. At times I would ask my son to run to his room as fast as he could to get something, and I would time him. I would be very impressed by how fast he was and then ask him if he thought he could do it even faster. By the time he raced up and down the stairs five times, he was tired, his frustration was gone, and he was in a great mood from endorphins and playtime. If running in the house is against the rules where you live, a trip to the car in the garage or the mailbox could serve the same purpose.

Journal. Emotions and tension need expression in order to be processed and released. Some find journaling a great resource for sharing feelings of frustration, resentment, and impatience. Through that process you can gain a deeper understanding of self. If you have concerns about a person reading your journal, use electronic media that can be password protected or secure a written journal in a private place.

Prayer. Never underestimate the power of prayer. It does not have to be a long prayer, and it does not have to be out loud. Simply pray, “Loving God, I am at the end of my patience. I am overwhelmed and I don’t feel I can hold it together right now. I need you to strengthen me. I need you to calm me. I need you to give me peace. Most of all, I need you. Amen.” What a powerful lesson for a child who struggles with behavior to hear you pray a prayer like that, or for you to pray together.

Communicate. Talk to someone about your frustration. It helps! If a person is the source of your frustration, have a conversation with him or her at a time when you are calm and have a clear perspective. Opening channels of communication is likely to help alleviate the strain. If the source of frustration is not a person, but rather a situation, confide in a spouse, good friend, or pastor who can be objective and help you look for solutions or simply provide a sympathetic ear.

Find support. Being part of a community of people on a journey similar to your own is helpful. It provides a forum where you can be easily understood because others live with situations similar to your own. Find a place where you feel that you belong and can connect in a meaningful way that is rejuvenating. Others living your with similar experiences may have resources and helpful tips that will provide a solution to your problem. Even if others cannot offer a solution, it is healing simply to be heard and understood.

There are no perfect parents and everyone will lose their patience at times.  Give yourself permission to be human. With intentional practice and anticipation of situations that will test patience it is possible to improve personal patience.

Patient God, We are so grateful that your capacity for patience far exceeds our own.  Help us find ways to tap into your infinite reserve of calm in those moments when we feel we may lose it. Forgive us our human failings when we fall short and help us find grace  and forgiveness in others.

Rev Doc Lorna

“Meditation By Young Women” by tiverylucky courtesy FreeDigitalPhotos.net