AWANA Conference Presentations on Slideshare…

10616042_943888922292747_1055377239540652909_nI had a fabulous time yesterday as the guest of TJ Sipes, his wife and ministry team as they hosted the 2014 Awana Annual Conference for 150+ group leaders and commanders from across the state of Mississippi. The event was graciously hosted by First Baptist Church in Oxford, featured thirty workshop leaders, and was attended by a number of senior pastors in addition to all the leaders faithfully serving kids on a weekly basis.

TJ and his wife serve as Awana missionaries…he’s put 250,000 miles on his van traveling the state to support the leaders serving kids and families in churches small and large. It was a pleasure to see firsthand the impact their ministry has had among those they serve. They would very much appreciate your prayers and support.

imageIt was a big day. While Awana has resources to support kids and families in spiritual  development from birth to adulthood, the vast majority of leaders who attended the event in Mississippi work with school-age kids. The theme of the conference was “all”…how attendees could share the Gospel with all kids and families. We talked about how kids who experienced trauma, kids with mental health issues and kids who struggle with social communication who would never consider being a part of a “special needs ministry” could be included at Awana. I had a number of conversations with leaders afterward who shared their experiences…many very personal…of wanting kids to be part of church and the struggles involved with making that happen.

imageThe most common message communicated to me during and after the conference was…”You’ve really made me think.” Please join me in praying that every leader in attendance yesterday will welcome one kid and one family to their Awana ministry as an outcome of our conference.

For those who couldn’t attend…here are the presentations we shared…

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KM Logo UpdatedKey Ministry is pleased to make available our FREE consultation service to pastors, church leaders and ministry volunteers. Got questions about launching a ministry that you can’t answer…here we are! Have a kid you’re struggling to serve? Contact us! Want to kick around a problem with someone who’s “been there and done that?” Click here to submit a request!

Posted in ADHD, Anxiety Disorders, Families, Hidden Disabilities, Inclusion, Key Ministry, Resources, Training Events | Tagged , , , , , , , , , , | Leave a comment

Kimberlie Zakarian…When an invisible disability meets pediatric bipolar disorder

Kimberlie Zakarian daughterEditor’s note: I “met” Kimberlie Zakarian online after our series with Rhett Smith several years ago on The Anxious Christian. Kimberlie attended school with Rhett and leads a group for parents of kids with hidden disabilities, bipolar disorder, autism, depression, ADHD, anxiety and oppositional defiant disorder at a YMCA in the Los Angeles area. 

Kimberlie had asked me if our readers would be interested in “real-life” perspectives from families in the church impacted by mental illness. Here’s her family’s story…

When a new mother is pregnant she prays for her baby to be healthy. I believe all moms worry to some degree about this issue. I also think the focus is often on physical health. I personally never once thought to pray for my daughter’s mental health.

When “Kaylie” was born she was healthy, and well, perfect. The doctor shouted, “Nine on the Apgar! It doesn’t get better than that!” She looked like a wise soul from the start. As she grew, three things stood out to me: her intellect, her activity level, and her humor.

I would be exhausted every day caring for this child who never stopped. She could do and remember things beyond what was developmentally normal, and had a sense of humor and language skills that teachers and physicians found remarkable. People often commented on how busy she was. They would say things along the lines of: She is not bad, she just never stops. She is so smart! I have never seen a child this busy, not even a boy! She knew her colors and could count to seventeen by 18 months. She also sat and prayed a long prayer to God at the age of 21 months when I was pregnant with my second child and showing signs of fatigue in the kitchen.

Her insight amazed me. But I was worn out. I felt an innate instinct to protect her and keep her hand within mine in public. She was impulsive and would dash off to activities if she could get away with it. But something else seemed wrong.

At 12 months our pediatrician was curious about her eyesight. I had noticed that she would close her eyes tightly when outdoors in the sun and had what seemed to be depth perception issues. She received a diagnosis of Ocular Albinism by 18 months. Ocular Albinism is a condition of decreased pigmentation of the iris and retina, which is the light-sensitive tissue at the back of the eye. Pigmentation in the eye is necessary for normal vision. This condition cannot be corrected with glasses and sunlight and glares are painful.

Kaylie’s diagnosis resulted in visits to City of Hope, Children’s Hospital, and the National Institutes of Health (NIH). Geneticists, pulmonologists, hematologists, nephrologists and eventually, a retinologist led me to learn about Hermansky Pudlak Syndrome (HPS), a potentially life threatening disease which consists of prolonged bleeding time, pulmonary fibrosis, and kidney failure. Conferring with the doctors on the East Coast and getting blood work under a special microscope confirmed that my daughter had a disease that could potentially kill her later in life.

There are nine types of HPS, three have milder symptoms. I spent a decade learning from the doctor’s at NIH and educating the hematologists here in Los Angeles. There were only about 200 known cases in the world at the time and none known on the West Coast. Most individuals with HPS have Albinism (little or no production of the pigment melanin. The type and amount of melanin your body produces determines the color of your skin, hair and eyes) Kaylie was not Albino, but I had no idea if that meant anything. What I didn’t know is that this “hidden” disability, which included what looked like behavioral issues because her’ vision was not correctable with glasses, was to be the least of my worries. The real danger to her life and our family was pediatric bipolar disorder which had not yet completely reared its head.

So I had a little girl who was very active who could not see unless she was up close to something. This led to not staying in her seat, impulsivity, behavioral issues, and constant chatter and questions. She was a delight in so many ways, but it would be dishonest if I said it was not draining.

SteepleIt affected every area of our lives, including our church life and ministry. One evening, while I was doing a baptism at church, Kaylie darted away from a family member in the front pew and rushed up the steps to the baptismal so she could see mommy baptizing people. She had such a love for God and hunger to learn that she did what was natural for her. I understood it. But I also knew it may have been disruptive to others. I will never forget my pain, and inner anger, at our next staff meeting when our new pastor brought up the topic of parents not controlling their children and how these kids think they are the center of the universe.

Once Kaylie’s bipolar disorder was diagnosed at age ten and I finished my Masters of Science in Marriage and Family Therapy (MSMFT), I knew educating church leaders on disabilities and mental illness was going to be one of my passions.

I walked through seven years of horror wondering which type of HPS my daughter had. We traveled to NIH to have a special procedure done to diagnose the type. It took months to get the results. Eight months later received a phone call that Kaylie had Type Three HPS, the type with the mildest symptoms. I was so relieved, but that did not take away from what had begun to emerge ten month earlier in Kaylie’s life: signs of rage and debilitating depression.

The first inkling that something was amiss emotionally was when Kaylie showed signs of rage. She was frustrated one afternoon and grabbed her grandmother who she adores, screamed, then threw and broke a vase. After a few of these episodes, I took her to a well known pediatrician in our area that specialized in Attention Deficit Disorder, anxiety, and depression. He assessed her and determined that a diagnosis of pediatric bipolar disorder was a possibility. He referred us to a pediatric psychiatrist who confirmed the diagnosis. After the doctor shared his story of having a son with bipolar disorder as a child and how medication had changed his life, I made the difficult decision to start Kaylie on mood stabilizers and a low dose antidepressant. She also began therapy. Over time, I had three more psychiatrists assess her to be sure. They all confirmed a diagnosis of bipolar disorder.

We had ups and downs for over a year; lots of fits and seasons of depression. Her depression made it difficult to get to school and church. Her mania caused many moments of embarrassment as I learned to handle her better in moments of mood swings. Kaylie also experienced intense anxiety. One evening, at the age of fifteen, she was having a panic attack and stepped outside the sanctuary to get air which she was allowed to do. She started to walk and didn’t see the change in the depth of the patio and tripped and fell down the stairs. Because of her embarrassment, she walked a little way down the sidewalk where she experienced a panic attack. A police car drove by and mistook her symptoms for the influence of some kind of substance. They took her to the hospital, which only increased her panic.

When I exited my own church service I could not find my daughter. The church was ill equipped to help. I finally located her in the hospital where the police had taken her – all for a panic attack. Another time she was feeling irritable at church and I allowed her to walk within eyesight to regroup. A congregant tried to talk to her and in the state she was in she could not answer. They began chastising her for being a rude teen.

My daughter and our family suffered so many of these types of incidents which led to low self esteem, depression, cutting, and emergency room visits because of her bleeding disorder. Some of her hospitalizations were for several days. During those times, not one person from the church we were at came to visit or pray with me. My guess is that they perhaps did not know how to handle mental illness. Walking those early years alone as a parent of a child with bipolarity led to depression and trauma on my part. This is the trauma many parents of children with hidden disabilities endure. We suffer from lack of support and understanding, exhaustion, embarrassment, stigma, feeling unimportant, and being overlooked. This emotional trauma as a parent took my own personal therapy to get over. This is why it is now my life’s work to help other parents, community leaders, first responders, and church leaders to understand mental illness.

It has been a long road, but Kaylie is now properly medicated and she has had years of therapy and psychoeducation. Improvements came when we added an antipsychotic medication called Seroquel. Medication completely changed-and possibly saved my daughter’s life – and the family dynamics. She was stable, happy, and her depression diminished. People in our church community made comments about medication and lack of faith. These words and the lack of knowledge behind them hurt so many families. There are certain disorders that need medication, much as a broken leg needs a cast to heel. God “can” heal that leg through prayer and faith, but most often God expects us to go to a doctor and get a cast. The same is true with certain hidden disabilities. God has the power to heal them, but He usually directs us to doctors and other professionals to get the help and quality of life that is possible.

Today Kaylie is an amazing young woman. She is a strong, vibrant, intelligent, and wants to be a psychotherapist who works with children and troubled teens. She runs 10 miles a day, draws at a professional level, sings and plays guitar, and is getting ready to study psychology in college.

Medication and therapy changed her life. Children cannot treat themselves. They rely on the adults in their life to get them help – or not. For us, I am thankful that we used the resources that were available. They saved my daughter and our family.

Note: Pediatric Bipolar Disorder is the presence of extreme emotional states that occur in distinct periods called “mood episodes.” These distinct periods of elevated, expansive or irritable mood are accompanied by intense shifts in activity, energy, behavior, and sleep. These episodes are distinct changes from a person’s normal mood and behaviors. When a child or adolescent is extremely silly, talkative, joyful, or excited this can be a manic episode. Intense sadness, fatigue and hopelessness are frequently associated with depressive episodes. In children, moods can include symptoms of irritability and rage. Bipolar Disorder affects millions of Americans. The National Institute of Mental Health (NIMH) estimates that more than one-half of all cases are diagnosed between the ages of 15 to 25.

About the author:

Kimberlie ZakarianThe Rev. Kimberlie Zakarian is Licensed Marriage and Family Therapist in private practice in Glendale, California as well as the director of Thrive Therapy Center, a non-profit organization. She is a graduate of Fuller Seminary School of Psychology with a Masters of Science in Marriage and Family Therapy (MSMFT). She has post doctorate training from Harvard Medical School in ADHD, mood disorders, and psychopharmacology and holds certificates from Duke University in Religious Cognitive Behavioral Therapy and Cognitive Behavioral Therapy. Kimberlie specializes in mood disorders, ADHD, and trauma. She is currently completing her Psy.D. in Marriage and Family Therapy. She is an ordained minister, columnist, and speaker and regularly does trainings for parents, churches, schools, and first responders on how to effectively work with special needs children and mental illness. She can be reached at Kimberlie@kimberliezakariantherapy.com

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KM Logo UpdatedKey Ministry has assembled resources to help churches more effectively minister to children and adults with ADHD, anxiety disorders, Asperger’s Disorder, Bipolar Disorder, depression and trauma. Please share our resources with any pastors, church staff, volunteers or families looking to learn more about the influence these conditions can exert upon spiritual development in kids, and what churches can do to help!

Posted in Advocacy, Bipolar Disorder, Families, Key Ministry, Mental Health, Stories | Tagged , , , , , , , , , , | 6 Comments

Who’s your ONE?

WhoseYourOneToday’s blog post is authored by Mike Woods, Church Consultant with Key Ministry.

One of the potential issues with starting special-needs ministry outreach is that the scope of the disability-related problems in your community can seem so big that it is almost a nonstarter. One can be almost tempted to throw in the towel before even getting started!

Interestingly, Carnegie Mellon University did a study on this very issue. Specifically, they were looking at something called the “Drop In The Bucket” effect. The Drop In The Bucket effect has to do with one’s belief in being able to do anything about a problem/issue that is perceived as being too great for one person to handle.

In the study, the focus was on monetary donations and how people were less inclined to give money when they felt as if their donation wouldn’t really make a difference in the scope of the problem. Additionally, the Drop In The Bucket effect can also diminish people’s desire to volunteer. The research shows that when people feel as if an issue is too big to tackle, they are less likely to volunteer.

Jesus, in an interesting way, addresses this issue in the Gospels. You will find it in Matthew 25:37-40. Here it is:

Then the righteous will answer him, ‘Lord when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or naked and clothe you? When did we see you sick or in prison and visit you?’ And the king will answer them, ‘I tell you the truth, just as you did it for one of the least of these brothers or sisters of mine, you did it for me.’”

When I hear people attempt to quote this verse from memory they almost always get it wrong. They get it almost right…but not quite right. Here is what they typically say from memory concerning verse 40:

“And the king will answer them, ‘I tell you the truth just as you did it for the least of these brothers or sisters of mine, you did it for me.’”

Close, but no cigar! Without looking at these verses again and comparing them, can you tell me the key word that is missing from the second verse that was in the first verse? Here it is: “one.”

Small word, but one that makes a big difference!

Here is what I think Jesus is saying in verse 40,

Look, what matters to me is not that you go and try to change the world. How about you just love on one person. Let’s start there.”

By focusing on just one person you begin to humanize the problem. You are not just helping single moms, but you are helping Peggy. You are not just helping kids at-risk, you are helping Robert. It is no longer all those people with disabilities, but it now becomes my next-door neighbor Larry, who has Down Syndrome.

I believe that Jesus, in this passage, is taking away the excuse to say that the problem is too big, it’s a drop in the bucket, or is anything that’s going to really change if I get involved?

Here he is saying  just focus on one. Find your one.

Don’t worry about the numbers because numbers can make you…numb.

Just focus on one person. Find your one.

A recent example that I can share with you of the Drop In the Bucket effect is our outreach mission for this year: “To end relational poverty in the disability community.” One of the issues that I have been concerned about are the lack of opportunities for social engagement in our disability community. Relational poverty is the term that I use because many of our adults in group homes are extremely poor in the area of friendships.

When our special needs ministry decided to tackle this issue, I took the lead in identifying the scope of the problem. I discovered that were 30+ special needs group homes in Orange County, Florida. The majority of these group homes were very open to the idea of our church coming out and hosting fun activities and social events that would create social opportunities to develop friendships. These 30+ group homes represent 300-500 individuals with special needs.

I would have to admit that this definitely felt like a Drop In The Bucket moment. The problem seemed so big, so beyond the scope of what we had initially thought, that we were not sure where to start. Some even voiced the idea that the need was so large that we might not want to address it.

However as we prayed about it and read through Jesus’s words in Matthew chapter 25, the Holy Spirit helped us to see exactly what we needed to do. Just focus on one! So with that said we decided to start by focusing on just one special needs group home. Since that time we have had volunteers from our church visiting that group home on a weekly basis and conducting fun social events on a monthly basis. Just focus on one.

On a side note, I was recently called by the Director of one of the group homes who had initially expressed no interest in having our church come visit. She expressed that after observing what we had been doing in other group homes, and the relational focus of what we were doing, she was beginning to change her jaded view of church.

She asked if it was possible to meet and talk about how we might be able to make a difference for her residents where she worked!

So you see, you don’t have to try and change your whole city. Start by focusing on one.

  • One group home.
  • One family in need.
  • Or simply one individual.

And inspire and encourage your church members to find their one. Find the one group home, the one family, or the one individual to invest their time in and make a difference.

As you well know, it will not only make a difference for that person in need, but also in the heart of the person volunteering.

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Mike-Woods-Joy-Prom-@-1024x615In addition to serving as a Church Consultant with Key Ministry, Mike Woods currently works as the Director for the Special Friends Ministry at First Baptist Orlando. Prior to joining First Baptist Orlando, Mike worked for nine years as the autism and inclusion specialist for a large school district in metropolitan St. Louis. Mike regularly blogs for Key Ministry on topics related to “missional” Special Needs Ministry…how churches can “leave the building” to share the love of Christ with families impacted by disabilities in their local communities.

Posted in Advocacy, Inclusion, Intellectual Disabilities, Mike Woods | Tagged , , , , , , , | Leave a comment

Cleveland rocks!

logoNo church can do everything, but every church can do something. And several small churches working together can do some pretty amazing things!

Last winter, I received my first e-mail from Shane Geisheimer. Shane isn’t a professional Christian…he’s a techie involved with an internet company, but he’s passionate about Jesus and passionate about ensuring that folks with disabilities get to experience the love of Jesus.

Shane had this big, hairy, audacious, God-shaped vision to allow teens and adults with developmental and intellectual disabilities in the greater Cleveland area to experience a taste of Heaven through staging a Prom…similar to those staged at very large churches in Cincinnati, Orlando, Raleigh and other cities. He procured resources from our website and tool kit and ruthlessly networked throughout our community. Unlike our friends and ministry colleagues who have been involved in staging Proms, Shane faced a very large obstacle…

You see, Shane belongs to a small church…Hope United Methodist Church. Shane’s church is may be relatively new…it was formed by the consolidation of several very small Methodist churches in older suburbs on the southeast side of Cleveland that fell into decline as families moved on to larger homes further away from the city. Shane’s church currently worships in a very old building that lacks the facilities to host an event of the scope envisioned by his ministry team.

Shane approached other churches in the Northcoast District of the East Ohio Conference of the United Methodist Church and found two other churches…Garfield United Methodist Church and South Euclid UMC up to the challenge. Garfield offered its’ facilities to host… despite being smack in the middle of a major renovation/construction project! The Heart of Rock and Roll Prom was on!

The Prom was the culmination of a week-long series of events throughout Cleveland and Northeast Ohio to increase awareness of the needs of people with disabilities, including a worship service for families impacted by disability.

I was honored to have received an invite to attend on Friday night, and I can’t imagine how the team could have welcomed many more guests into their facility, or how the guests could have had a better time. Don’t take my word for it…here’s a report from the Fox affiliate in Cleveland on the Prom (click on the picture below to view the video)…

Garfield Prom

The Heart of Rock and Roll Prom is a wonderful example of how churches without limitless resources can come together to provide a great experience for individuals with disabilities while promoting awareness of their needs in the communities they serve.

Well Done, Garfield, Hope and South Euclid UMC!

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KM Logo UpdatedKey Ministry is pleased to make available our FREE consultation service to pastors, church leaders and ministry volunteers. Got questions about launching a ministry that you can’t answer…here we are! Have a kid you’re struggling to serve? Contact us! Want to kick around a problem with someone who’s “been there and done that?” Click here to submit a request!

 

Posted in Intellectual Disabilities, Key Ministry, Stories, Strategies | Tagged , , , , , , , , | 1 Comment

Why I’m a little unsettled by the blowback against Matt Walsh…

Matt WalshI straddle two subcultures in my daily interactions…one composed of kids and families impacted by mental illness and the other of persons immersed by occupation or relationship in a socially conservative subculture within evangelical Christianity. To say that thought leaders in the mental health community and the more evangelical branches of the church struggle with understanding one another’s fears and concerns would be a gigantic understatement.

The cynic in me suspects that Matt Walsh’s provocative comments about Robin Williams’ “choice” to commit suicide may at some level be a strategy to generate page views and increase the visibility of his blog in search engines. But he touches on an important issue that those of us who advocate for individuals and families impacted by mental illness within the church will have to address within any meaningful dialogue…the issue of free will.

One reason why mental health advocates and church leaders all too often end up talking at one another instead of with one another is that each group sees the other as failing to recognize and integrate an essential view of the origins of mental illness into their understanding of the problem.

The Greek philosophers wrestled with the concept of free will for hundreds of years before Paul wrote the Book of Romans. Our conceptualizations of God’s righteousness and grace are closely tied into our understanding of our freedom to make moral choices and the extent to which a just God can hold us accountable for our decisions.

shutterstock_148715915In child psychiatry, we wrestle all the time with questions from parents wondering whether their kids have the capacity  to control troublesome behaviors. In general, these questions don’t lend themselves to “all or nothing” answers. A first grader with combined type ADHD has some capacity to control their impulses to punch and kick their younger sibling, but they may have to work harder at controlling the behavior than their friend across the street without ADHD. What level of moral responsibility does a non-verbal boy with autism and a history of sexual victimization bear for fondling younger children? Or the man with bipolar disorder who spends his kid’s college fund on cocaine and hookers in the middle of a manic episode? Katie Wetherbee wrote a fabulous blog post in which she discusses whether the people who jumped out of the upper floors of the World Trade Center on September 11 were truly free to “choose” to stay in their offices given the unimaginable horror of their immediate environment.

Maybe one of the reasons the church has struggled so mightily to respond with appropriate resources, empathy and understanding to people with mental illness is that they present challenges that cut to the heart of our understandings of the nature of man and the character of God? Wrestling with our core concepts of whether we’re capable of freely choosing God (or any other actions) and the extent to which God chooses us can be very uncomfortable!

FMRIHere’s the flip side to the discussion-the part that my friends in mental health advocacy may be missing…just because we can’t point out an area labeled as the “soul” on an MRI or SPECT scan of the brain doesn’t mean that people don’t have one! My fellow scientists are profoundly uncomfortable acknowledging realities that we’re unable to measure or quantify. We’re more than just the sum of our synapses, neurotransmitters and life experiences. There’s way too much that we’re not capable of explaining about illnesses like depression through physical science and there are too many reputable counselors and pastors with far too many reports in which resolution of faith-related issues brought about recovery from mental illness. When mental health advocates fail to acknowledge and integrate moral and spiritual perspectives with an understanding of neuroscience in discussions of how the church can minister with families impacted by mental illness, they lose trust and credibility with church leaders.

Consider the parallels between this discussion and another discussion our culture wrestles with…the extent to which sexual orientation is an immutable human characteristic, and whether one’s sexual behavior represents an outcome of the exercise of free will. In each case, we have some general sense that genetic predisposition (without evidence that one gene, or set of genes are causative), environmental influences and life experiences contribute to the condition/behavior in question. We also have a multitude of reports that spiritual conversion led to relief from depression and/or suicidal thinking or a change in sexual orientation/behavior…reports that are rejected by those who argue against a “free will” component being present.

The biggest mistake I’ve ever made serving in a ministry capacity took place a few years ago when I publicly called out an ambitious young ministry leader who had carved out a platform of considerable influence for making some statements that (in my view) discouraged many churches from serving a large segment of kids with special behavioral needs. It wasn’t very gracious on my part…this leader probably hadn’t thought the statements through completely, but my lack of grace precluded any possibility of working collaboratively. We need to be “bridge builders” as opposed to bridge burners.

Matt was clearly insensitive…but he raised important issues that all Christians will need to wrestle with in terms of free will and moral responsibility. We’re all going to struggle from time to time integrating real-life quandaries with the Absolute Truth as revealed to us through Scripture. A little grace is more likely to produce constructive conversations that lead to change within the church.

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shutterstock_118324816Key Ministry has put together a resource page for pastors, church staff, volunteers and parents with interest in the subject of depression and teens. Available on the resource page are…

  • Links to all the posts from our recent blog series on depression
  • Links to other outstanding blog posts on the topic from leaders in the disability ministry community
  • Links to educational resources on the web, including excellent resources from the American Academy of Child and Adolescent Psychiatry (AACAP), a parent medication guide, and excellent information from Mental Health Grace Alliance.

Posted in Controversies, Depression, Inclusion, Key Ministry | Tagged , , , , , , , , , , | 5 Comments

Any parents of kids with disabilities interested in an online small group?

Account PicEditor’s Note: Key Ministry’s online church initiative involves exploration of new strategies for local churches to use in outreach and ministry to/with kids with disabilities and their families. One strategy we’ve considered involves making real time small group experiences available in an online format for families who are unable to join these experiences because of a lack of affordable, high quality child care. We doubt it’s a coincidence that we’ve had a number of conversations lately with Dr. Lorna Bradley.

Rev. Dr. Lorna Bradley is an ordained deacon in the United Methodist Church, wife, and mother to a 23 year old son with Asperger’s Disorder. Lorna serves at The Hope and Healing Institute in Houston, creating tools for churches to welcome families with special needs. Her particular interest is providing parent support to increase family resilience. She has developed a pilot curriculum for small groups composed of families of kids with special needs. Here’s a guest blog…and an invitation from Dr. Lorna!

“I do the best I can as a parent, but I am not enough. Not nearly enough. I feel overwhelmed many days.”

Does that feeling sound familiar? Sometimes parenting a child with special needs feels more like coping day to day rather than thriving as a parent. One of the most challenging parts of being a special needs parent can be isolation. Even in the midst of caring for the children we love, everyday life may feel like just getting by in between crises. For the past four years I have led parent support groups in order to bring a sense of connection into the lives of special needs parents and provide practical strategies for increasing resilience. A parent in one of my groups refers to our time together as her “weekly cup of hope.” She finds it helpful to have a group of people who get it, who understand the day to day challenges and walk with her through both joys and setbacks.

She is not alone in that feeling. Per research by Courtney Taylor, Erik Carter et al of Vanderbilt University parents shared that 71% would find it helpful if their congregations offered a support group, but only 12% of congregations do so. [1]

CasserolesThis lack of connection to parent support is something I am trying to address in two ways. First, I have written and am piloting a seven–week support curriculum. It is designed for churches to use in order to start new support groups and provide a new resource for ongoing groups. Second, I am concerned about accessibility. At times even if there is a group available, logistics like work schedules, childcare and bedtime routines make it hard for folks to participate.

Dr. Steve Grcevich recently contacted me with the idea of offering an online format for parent support via videoconferencing. This is a great opportunity to offer a community of support to parents who otherwise would not have access via a more traditional face to face group.

Starting Wednesday, August 27 at 9pm CST I will lead a pilot Special Needs Parent Connection for seven weeks. We will use the curriculum I have written. Topics include: God and disability, chronic grief, guilt, patience, self-care, nurturing healthy relationships, and hope and healing. Participation is free and registration will be limited to twelve participants, a good Biblical number for fellowship. This will be a learning opportunity for me and for the folks at Key Ministry in providing online support. We have hopes for offering more groups in the future. If you are interested in learning more about my ministry, visit the Hope and Healing Center website or my blog at specialneedsparenting.me.

You can register here for the online group.

[1] Footnote: Taylor, Carter et al surveyed 500 parents raising children with special needs in Tennessee to see what they need from their faith communities. The results are published in Welcoming Families with Disabilities: A Practical Guide for Congregations.

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KM Logo UpdatedKey Ministry is pleased to make available our FREE consultation service to pastors, church leaders and ministry volunteers. Got questions about launching a ministry that you can’t answer…here we are! Have a kid you’re struggling to serve? Contact us! Want to kick around a problem with someone who’s “been there and done that?” Click here to submit a request!

Posted in Advocacy, Families, Key Ministry, Strategies | Tagged , , , , , , , , , , , | 4 Comments

The relationship between depressed mood and church attendance

Baylor Religion Study 3This past Thursday, we discussed an interesting study examining the relationship between anxiety, church attendance and religious practice among U.S. adults.Today, we’ll look at findings from the study describing the church attendance and spiritual practices of people who self-identify feelings of sadness or depression.

The Institute for Studies of Religion at Baylor University conducted three national surveys of American religious beliefs, values and behaviors with the support of the National Science Foundation and the John Templeton Foundation. The third wave of the Baylor Religion Survey was sampled in the fall of 2010 in partnership with the Gallup Organization. In this wave, a random sample of 1,714 adults were interviewed with one major theme involving the relationship between health and religiosity. Participants were asked whether they had felt sad or depressed within the past thirty days, and the frequency with which they experienced these feelings. The data compares spiritual practices of adults who identified themselves as experiencing sadness or depression for ten or more days (11% for the overall sample) during the preceding month to those who reported no sadness or depression in the preceding month (39% of the sample).

Compared to those who reported anxious mood, differences in spiritual practices between “depressed” and non-depressed people were more striking…

  • Depressed vs. Non-Depressed39% of the “depressed” never attend religious services vs. 22% of non-depressed.
  • 15% of the “depressed” attend religious services every week vs. 36% of non-depressed.
  • 13% of the “depressed” read the Bible every week vs. 28% of the non-depressed.
  • Religious Affiliation Depressed vs Non-depressed20% of the “depressed describe themselves as “very religious” vs. 37% of the non-depressed.
  • 23% of “depressed” respondents identify themselves as religiously non-affiliated, vs. 23% of non-depressed.
  • 23% of “depressed” respondents pray more than once daily vs. 32% of the non-depressed.

I think it’s important to state the obvious by noting the major limitations to this sample. Readers may have noticed the use of quotation marks around the word “depressed” in listing the study’s findings. The inclusion criteria for “depression” in this survey are different than the DSM-5 criteria that physicians, psychologists and counselors use to diagnose major depression. Experience suggests that the word “depression” is used very differently from one person to another. I would also presume that significant overlap would exist between those in the study who described themselves as sad or unhappy and those who identified themselves as anxious or worried.

In examining differences between spiritual practices of adults with anxiety/worry vs. sadness/depression, one might speculate that those who identify with more depressed mood may experience relatively more functional impairment than those with anxiety. One of the signs of depression is the propensity to withdraw from established relationships, interests and activities…presumably that would include one’s relationship with God, possibly explaining the differences in frequency of prayer reported among the “depressed” not seen in those with anxiety or worry.

We don’t have much data examining the impact of mental illness on church involvement or attendance. While many experts in the mental health or Christian counseling fields acknowledge the mental health benefits of a vital faith, this data appears to represent a signal that self-reported symptoms associated with anxiety or depression may be significant barriers to church attendance.

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shutterstock_118324816Key Ministry has put together a resource page for pastors, church staff, volunteers and parents with interest in the subject of depression and teens. Available on the resource page are…

  • Links to all the posts from our recent blog series on depression
  • Links to other outstanding blog posts on the topic from leaders in the disability ministry community
  • Links to educational resources on the web, including excellent resources from the American Academy of Child and Adolescent Psychiatry (AACAP), a parent medication guide, and excellent information from Mental Health Grace Alliance.

Posted in Depression, Families, Key Ministry, Mental Health | Tagged , , , , , , , , | Leave a comment

The relationship between anxiety and church attendance…

Baylor Religion Study 3I came across an interesting study yesterday that examined the relationship between anxiety and church attendance. I’ll share some data and challenge the assumptions the study authors…and most church leaders would make at first glance.

The Institute for Studies of Religion at Baylor University has conducted three national surveys of American religious beliefs, values and behaviors with the support of the National Science Foundation and the John Templeton Foundation. The third wave of the Baylor Religion Survey was conducted in the fall of 2010 in partnership with the Gallup Organization. In this wave, a random sample of 1,714 adults were interviewed with one major theme involving the relationship between health and religiosity. We’ll look today at data examining relationships between religious practice and mental health.

The study authors inquired whether worried people are more religious than non-worriers.  They defined worriers (17% of the U.S. population) as people who self-identified as feeling worried, tense or anxious for ten days or more in the preceding month.

Worriers and religious behaviorThe authors found that worriers were less likely to attend religious services.

  • 33% of worriers NEVER attended religious services in the past year (vs. 25% of non-worriers)
  • 17% of worriers attend religious services every week (vs. 37% of non-worriers)

Worriers are significantly less likely (13%) than non-worriers (29%) to read the Bible on a weekly basis.

Worriers are less likely (19%) to consider themselves religious compared to non-worriers (39%).

Worriers are more likely (18%) than non-worriers to describe themselves as unaffiliated with a religion.

There are no significant differences in the frequency with which worriers and non-worriers pray.

The conclusion that most pastors and church leaders make when they look at data like this is that there are clear benefits in anxiety reduction from attending church, and people in general experience anxiety reduction as a result of attending church because of spiritual growth and the relational benefits of being part of a larger faith community. But what if these differences reflect (to some degree) a selection bias?

Is it possible…or even likely that an important reason people attending church report less anxiety is that the regular experience of anxiety causes people to have more difficulty in attending church?  It’s interesting that worry impacts church attendance but not the frequency with which people pray. I’d also wonder if the difficulties people with anxiety have in engaging in corporate worship contributes to the self-perception that they’re less religious?

What do you think?

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KM Logo UpdatedKey Ministry has assembled resources to help churches more effectively minister to children and adults with ADHD, anxiety disorders, Asperger’s Disorder, Bipolar Disorder, depression and trauma. Please share our resources with any pastors, church staff, volunteers or families looking to learn more about the influence these conditions can exert upon spiritual development in kids, and what churches can do to help!

Posted in Anxiety Disorders, Hidden Disabilities, Key Ministry, Mental Health | Tagged , , , , , , , | 2 Comments

How “prior authorizations” impact kids with disabilities…

ID-10082836I’m going to take the opportunity to vent today about an element of our modern healthcare system that is poorly understood by most families and the single intrusion into our child psychiatry practice most likely to overwhelm my anger management skills…”prior authorizations.”

When a parent leaves our office and drops a new prescription off at their pharmacy, they’re often informed they won’t be able to get their medication until someone from our office calls a clerk associated with their health plan or pharmacy benefit manager subcontracted by their health plan to authorize payment for the prescription.

It has become increasingly common for families to have coverage switched from one insurance company to another from year to year. Insurance companies will periodically cut deals with new pharmacy benefit managers that work from different algorithms of “preferred” drugs. We’ve historically had a limited number of families obtain secondary health insurance through Medicaid that paid for much of the cost of necessary prescriptions. Each of these events usually triggers a “prior authorization” request…in these cases, the insurance company or pharmacy benefit manager is generally refusing to pay for medication that has been demonstrably effective for that child.

All of this is presumably done in an effort to contain the cost of health care…but it may only be successful in containing the costs for the entity overseeing the pharmacy benefit.

shutterstock_174158831This process is a nightmare for families…especially families of kids impacted by significant disability. Insurance is very expensive. Families have larger and larger “deductibles” before insurance benefits kick in, and an increasing number of companies refuse to count the cost of medications families pay for out of pocket toward the deductible unless the medication is first “approved”…even though the insurance company isn’t actually paying for the medication. Families of limited income may have no recourse if insurers refuse to pay for medication or other necessary treatments.

We had a member of our office staff quit (to a large degree) because of her frustration with the process she needed to go through to get prescriptions authorized…and the verbal abuse from anxious family members who assumed we weren’t doing what we needed to for their kids to get their medication. I’ll paraphrase the end of the phone call that put her over the edge-after waiting on hold for an hour to speak to a clerk who refused to authorize the prescription written by our physician…

FCBTF staff: Can we have our doctor speak to your doctor who oversees these decisions?

Insurance clerk: We don’t have a doctor.

FCBTF staff: What are your qualifications?

Insurance clerk: I’m a college student.

I’ll share two particularly egregious anecdotes from personal experience this past year…

I was treating a very complicated kid with ADHD, separation anxiety, obsessive thinking and  inflammatory bowel disease who had major difficulties with academic performance, behavior and school attendance despite working with a very qualified counselor.  We found that the combination of a low dose of stimulant medication and atomoxetine (a non-stimulant medication approved for treatment of ADHD that has also been demonstrated to be helpful for several types of anxiety in kids) together with ongoing counseling was very effective in helping this kid to attend school and succeed in school for over a year.

One day, the parent calls us in a panic because their new insurance company refuses to pay for the atomoxetine. After our office staff literally spends hours on the phone with this company and I spend a half-hour (uncompensated, of course) writing a report describing the kid’s treatment and response to every medication they’d received, the company determined we would need to stop the current medication and rechallenge the child on their “preferred” medication even though the company’s “preferred” medication produced a serious adverse reaction fifteen months before. How could any physician in good conscience (or any parent) stop an effective treatment and subject a kid to medication that produced a significant negative reaction as a precondition for accessing healthcare benefits to which they were entitled?

More egregious was the case of a very complicated teen with a severe mood disorder who had been stable for over a year on a combination of medications that included aripiprazole. The parent goes to their pharmacy to pick up a refill and is informed that the medication is no longer covered. Despite the efforts of our staff to get the medication approved, the company insists on only approving an alternate medication. By day five, the police were searching for this teen who was missing from home. When the police found the teen, they required admission to the psychiatric unit of a local pediatric hospital. For three days, the staff of the local pediatric hospital fought with the insurance company that maintained their refusal to pay for the medication. The pharmacy benefit manager only relented when the hospital refused to discharge the patient until they had been stabilized on the prior medication.

The pharmacy benefit managers and insurance companies are shielded from liability in most states for their denials of coverage…they say they’re not practicing medicine but simply making determinations about the benefits covered.

I have a peer who works in a clinic serving indigent kids in another county in Northeast Ohio. She tells me she commonly has to see kids and families with a phone held to her ear while she waits on hold to speak with clerks at the Medicaid HMOs so that the patients she saw earlier in the day are able to get their prescriptions. Another colleague serves as Medical Director for Children’s Services at our county’s primary mental health center. Last year, they had two full-time employees on staff (supported by public funding) to deal with the necessary bureaucracy so that the patients served by the agency’s three full-time doctors could fill their prescriptions.

There were times early this year when our staff was spending so much time on hold with phone calls for prescription authorizations that patients couldn’t routinely get through to our office to schedule appointments. One company wants to delegate the responsibility for submitting prescriptions to our office staff. We had another company suddenly demand that someone from our office call to give a comprehensive history every time a patient goes to the drug store to fill a prescription. Upon completion of this review, our staff would then be given an authorization code that they would be required to call into the patient’s pharmacy before the prescription could be filled.

Care Cloud ScheduleWe find ourselves needing to hire more staff to manage the process. Every time we have to increase our rates, we know more families will be priced out of their ability to access treatment through our practice. When our doctors have to take time away from kids and families to address insurance company mandated clerical tasks, less time is available for new appointments and kids and parents wait longer for care. When a kid on a stable regimen struggles after being denied access to medicine by an insurer or a pharmacy benefit manager, parents may have to pay for additional appointments to straighten out the mess or take time off for work and children may have to miss school. Most importantly, kids suffer.

Ponder the experience from the parent’s perspective. Imagine the fear when your child depends on a medication or treatment prescribed by a trusted physician. What do you do when a necessary treatment is unaffordable and an insurance company or their designated pharmacy benefit manager arbitrarily denies access to that treatment?

Dr. Danielle Orfi is a professor of medicine at NYU and authored this op-ed piece last week in the New York Times on the frustration this process causes for physicians and their staffs. From her article…

I bit my tongue for the remainder of my conversation with the insurance company, holding back long enough to obtain the prior authorization that would allow Mr. V. the 90 pills he needed each month. I tried not to break the phone when I finally slammed down the receiver.

I’m all for controlling medical costs and trying to apply rational rules to our use of expensive medications and procedures. But in the current system, everything seems to be in service of the corporate side of medicine, not the patient. The clinical rationale and the actual patient — not to mention the doctors and nurses involved in the care — are at best secondary concerns.

Feel free to share your story in the comments section below! Have you, or someone you know been adversely affected by nonsensical prior authorization requirements?

Photo courtesy of http://www.freedigitalphotos.net

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KM Logo UpdatedKey Ministry has assembled resources to help churches more effectively minister to children and adults with ADHD, anxiety disorders, Asperger’s Disorder, Bipolar Disorder, depression and trauma. Please share our resources with any pastors, church staff, volunteers or families looking to learn more about the influence these conditions can exert upon spiritual development in kids, and what churches can do to help!

Posted in Advocacy, Families | Tagged , , , , , , | 2 Comments

Dr. G to be keynote speaker for Awana Ministry Conference 2014-Mississippi

JerusalemJudea…and you will be my witnesses in Jerusalem, and in all Judea and Samaria, and to the ends of the earth.

Acts 1:8b (ESV)

Our Key Ministry team is delighted that Steve will be serving as the keynote speaker for this year’s Awana Ministry Conference on Saturday, August 23rd at First Baptist Church in Oxford, MS.

The theme of this year’s conference is all.

ALL AwanaEach week, more than 2,000,000 children and youth gather in Awana clubs all around the world. ALL Awana leaders are serving together in the work of the gospel to reach these children. But what about the family, community and world beyond your church? Are you bringing the hope of Christ to them?

Steve will be introducing conference attendees to families beyond the church in his featured presentation-There’s this kid…Including kids with emotional, behavior and developmental challenges in your ministry.

shutterstock_98689610One in five kids in the U.S. meet criteria for at least one mental health disorder, one in four experience a traumatic event by age 16, and a majority of the one in 68 kids diagnosed with autism spectrum disorders have average to high intelligence. For many, the environments in which we “do church” present subtle, but very real barriers to participation for kids with mental illness, trauma or developmental disabilities and their families. In this session, we’ll help Awana leaders identify potential pitfalls to kids with common disabilities becoming involved and staying involved with ministry, while exploring ideas for welcoming and including ALL kids in your ministry…many who may not otherwise have the opportunity to experience the hope of Christ.

In addition to the keynote presentation, Steve will be presenting three additional workshops…

Workshop 1: Helping kids with ADHD to grow spiritually. Steve relates our current understanding of brain functioning in kids and teens with ADHD with strategies to help them have a great Awana experience and overcome unique obstacles to spiritual growth.

Workshop 2: When kids become aggressive at church. This workshop is designed to help Awana leaders and volunteers develop strategies for serving kids at risk for behaving aggressively during ministry activities.

Workshop 3: Including kids in your ministry who struggle with anxiety. This workshop helps ministry leaders to recognize situations when anxiety represents a barrier to participation in Awana activities and develop strategies for welcoming and including kids with all types of anxiety into your programming.

In addition to Steve’s presentations, nearly 30 workshops will be available, addressing topics of interest to pastors, ministry leaders and volunteers serving kids of all ages.

PrayerCard2014bClick here to make your reservation for the conference. Early registration is available for $25.00 through August 12th, after which the cost is $30.00 (senior pastors and their spouses attend for free). For questions or additional information, contact Awana missionaries T.J. and Kathy Sipes at tjs@awana.org or kathys@awana.org.

Steve is very much looking forward to Southern hospitality and the opportunity to meet new friends of Key Ministry in Oxford, MS on Saturday, August 23rd!

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KM Logo UpdatedKey Ministry is pleased to make available our FREE consultation service to pastors, church leaders and ministry volunteers. Got questions about launching a ministry that you can’t answer…here we are! Have a kid you’re struggling to serve? Contact us! Want to kick around a problem with someone who’s “been there and done that?” Click here to submit a request!

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