UCC Disabilities Ministries

“New Developments: New Angles on Developmental Delays” is a newsletter published by Developmental Delay Resources, a resource network integrating conventional and holistic approaches.

Volume 14, Number 1, Fall, 2008 Newsletter Contents

Wisconsin Integrative Hyperbarics Center …….Page 1
Executive Director’s Column…………………………..Page 2
Today’s Warriors: Dan Millman and Jenny McCarthy
News and Comments………………………………………Page 3
Education…………………………………………………………Page 4
The Power of Silence in the Classroom
Diet………………………………………………………………….Page 5
Twinkie, Deconstructed
Motor………………………………………………………………Page 6
Spelling, Movement, and Vision
Nutrition………………………………………………………….Page 7
The Mighty Mitochondria Revisited
Upcoming Events…………………………………………….Page 8

Visit www.devdelay.org

A new interfaith resource guide on autism is available for congregations, clergy and families. Titled, Autism and Faith: A Journey into Community, The guide provides an introductory, empowering resource for use by clergy, religious educators, and families to develop inclusive spiritual supports for children and adults with autism and their families and recognize the unique gifts that congregations and people with autism can offer to one another.

The fifty-two page guide for including individuals with autism in faith communities was developed by The Autism and Faith Task Force of The Boggs Center and The Center for Outreach and Services to the Autism Community (COSAC) with funding from The Daniel Jordan Fiddle Foundation. The Task Force worked for more than two years collecting stories and experiences from families, best practices and strategies from clergy and human service professionals, and resources from around the country.

The guide features more than fifteen short articles written by clergy, parents, professional experts on autism, religious educators and people with autism, illustrated by numerous sidebar stories and examples from families who shared their experiences, both positive and negative, with their own faith communities in New Jersey. It is interfaith, including examples from Christian, Jewish, Hindu, and Muslim communities.

The guide is edited by Mary Beth Walsh, PhD, Alice Walsh, MDiv, and Bill Gaventa, MDiv. Dr. Walsh is Roman Catholic and a graduate of Union Theological Seminary, New York, NY. Rev. Walsh is United Methodist, and a graduate of Drew Theological School, Madison, NJ. Both are parents of children with autism. Rev. Bill Gaventa is associate professor of Pediatrics and director of Community and Congregational Supports at The Boggs Center, and editor of the Journal of Religion, Disability, and Health. The editors were assisted by an interfaith editorial review committee, copy editor staff at The Boggs Center and COSAC, and members of The Autism and Faith Task Force.

The guide is expected to be available at the COSAC conference in May. It will be disseminated to faith groups, families, and disability organizations in New Jersey for free and to anyone outside New Jersey for a nominal fee of $5. Ordering information will be available on The Boggs Center’s web site at rwjms.umdnj.edu/boggscenter.

For more information, please contact Rev. Bill Gaventa, director of Community and Congregational Supports at The Boggs Center, 732-235-9304 or email rwjms.umdnj.edu/boggscenter or call 732-235-9317.

A request has come to UCC Disabilities Ministries for resources for children with autism, aspergers and adhd. The inquiry is focused on confirmation material. Our experience has been to tailor a course in basic content to the individual as each youth has specific gifts of understanding. Much depth can come with simplicity. Meet your young person where he/she is in understanding.

Persons who wish to share what they have done in preparing youths for confirmation are invited to make a comment and/or contact the webmaster if you have notes or other resources that can be put on the website.

I worked individually with a young woman who was in a similar situation after brain surgery. For us, it worked to be together 15 minutes at a time. Those minutes were focused on one topic to help her to concentrate. She responded well to art and concrete forms of symbols. We went through the basic material of confirmation in short form but enough so that she could connect and have a level of understanding appropriate for her. I believe that God does not require a test but comes to us with open-armed invitation.

As a young child, I was allowed to grow in my understanding of Holy Communion at my own pace. What I remember clearly today about this experience was the loving hands that carefully lowered the plate of bread and held the container of juice cups as they were passed in the pews. My family was busy in the choir and at the organ bench so I sat “at home” anywhere and with anyone in our church. I did not grasp the fine points of symbolism but you can be certain that I caught the essence of the act and the holiness of the moment. I was included without reservation in the family of God. db

This information is provided by the United Church of Christ Disabilities Ministries with Mental Illnesses Ministries to help the church become a truly inclusive body, accessible to all. (A2A)

WHAT YOU SHOULD KNOW . . .

We all know that persons with disabilities and their families should be integrated into the life of the church. We want to be welcoming in every way. However, we often do not know what to do and fear doing the wrong thing. Thus we sometimes appear to be unwelcoming. In reality, we are just uncertain.

Many people with disabilities have hidden or invisible disabilities. While we may not be aware of this, we might be alert to people asking for help in order to be welcomed into our churches. This brochure is designed to assist ushers and other church leaders to offer hospitality to all persons with disabilities.

Basic Suggestions:

• Always speak directly to persons with a disability instead of to a companion.
• Don’t hesitate to ask if you can help. Then follow instructions.
• Whenever possible, seat persons with a disability with other family or friends.
• Don’t ignore. Include persons with disabilities in what you are saying and doing.
• Stress the person, not the disability (example: a person who is blind, deaf, etc., instead of a disabled person).
• Talk as you would to anyone else. Don’t hesitate to use words like see, hear, and walk.
• Ask a person with a disability to usher, greet or serve on a committee.

Developmental Disabilities

• Some congregational members may be uncomfortable interacting with people who have developmental disabilities. Ask ahead of time who would like to share a hymnal, explain the service, or sit with the person at coffee hour or lunch. Provide training for such individuals in advance.
• Always offer a bulletin. Then the person has the right to accept or decline the offer.

Hearing Disabilities

• Speak clearly, slowly and normally.
• If your church has assistive listening devices, show persons where they are and how to use them. Before the service, check the devices to be certain they are in working order.
• Never speak directly into a person’s ear. Stand where those who lip read can get a clear view of your face. Form your words carefully, but naturally without distortion. If possible, select a more quiet spot as noise is distracting and makes speech difficult to follow. If more appropriate, communicate in writing or with gestures.
• Avoid changing topics abruptly as the person uses context to help understand what is being said.
• Try to seat persons with hearing difficulty in clear view of the pulpit and the sign language interpreter, if the latter is present. Both should be in one clear view for speaking and gesturing cues as well as for the actual interpreting.

Mental Illnesses

The word “mental” itself is stigmatizing. Hereafter we will use brain illnesses — commonly known as mental illnesses. Largely invisible, disorders in the brain interfere with the capacity to feel, think and relate. The symptoms of brain illness are varied. A person may appear sad, withdrawn, protective, preoccupied, carrying an unusual burden, or, on the other hand, may be highly energized or acting in a way unusual for the person or the situation.

• Treat persons with brain disorders and the families just as you do any other member of the Body of Christ. Offer the hospitality of a simple welcome and introduce yourself.
• Come along side, be present, listen. Stand with the person, as if you are looking out at the world together, ready to offer help, assistance or guidance. Accompany the person to a seat with or near someone who is supportive, understanding and companionable. Make introductions.
• Persons on medication for a brain illness may exhibit facial or bodily movements which people unaccustomed to this side effect of drugs may not understand. Create a space that is calm, reassuring and respectful.
• A brain disorder may cause behavior that is disturbing or disruptive. As with any episode of illness, find one or two knowledgeable members to assist by engaging the person kindly and quietly, inviting and accompanying the individual to a less active area of your church where appropriate care and help can be better provided. A good program which offers information about mental illness is helpful.

Mobility Disabilities

• A person who uses a wheelchair may be able to walk and may prefer to use a seat in the pew. Honor that choice. If possible, provide a few shortened pews so persons using a wheelchair can sit with and feel a welcome part of the congregation. Note that standing is a matter of choice.
• Do not, without permission, move a wheelchair, walker or crutches out of reach of the person who uses them. They are personal property.
• If assisting a wheelchair user up or down a curb, ask the person using the wheelchair for directions. The person using the wheelchair knows what works best. Steep ramps can be difficult and chairs heavy. If you have any doubts about handling the chair safely, get help.

Speech Disabilities

• Try to give your full, unhurried attention to a person speaking. Take time to appreciate the person talking. If you do not understand, ask for repetition or clarification. Do not courteously pretend to understand as you may be missing important information.
• Remember, a person with a speech difficulty may use alternative ways of communicating, including writing, mime or computer-generated speech.
• Resist the urge to complete words or sentences for the person with a speech difficulty.

Visual Disabilities

• When greeting a person with visual disability, identify yourself and your role as usher or greeter.
• Explain where things are located in terms of the person. Use the imagery of a clock to help orient the person to surroundings (Example: The choir is seated about 50 feet in front of you at 2 o’clock).
• Explain the order for worship if the person is unfamiliar with your church. Ask a member to join a person coming alone so specific worship instructions can be offered.
• If the person has a guide dog, ask how much room is needed for the dog.
• Always offer a bulletin. Make sure large print bulletins are available. If possible, offer a Braille or large-print hymnal. Offer to read aloud the bulletin if it is not available in an alternative form.
• Ask about seating preference then walk the person to the seat. Offer assistance when and if needed. Provide an elbow or shoulder if requested, but avoid grabbing or trying to push the person ahead of you.

In Case of Medical Emergency

• Never attempt to restrain or put anything into the mouth of a person having a seizure.
• Move objects or furniture to prevent injury.
• Make the person feel comfortable after the seizure by helping the person to a comfortable place to rest and offering reassurance.
• Since an incident could be epilepsy, a stroke, or a reaction to medication, find out if medical personnel or an informed family member is present. Call 911. One usher should call immediately while another stays with the person.
• In case of emergency evacuation, assist all known persons with disabilities.

For further information please contact:

Michelle Hintz, UCCDM
866-822-8224, ext 3845
Email: hintzm@ucc.org
www.uccdm.org

United Church of Christ Disabilities Ministry
C/O Parish Life and Leadership
700 Prospect Avenue East
Cleveland, OH 44115
1-866-822-8224 x3845

copyright by Bruce Ritchie 1997

Don’t ask my child to fly,
for he has not wings.

Don’t ask my child to see the
glint on the eagle’s beak,
for his vision has been
diminished.

Don’t ask my child to remain
calm amid the din,
for her ability to screen out the
noises has been taken away.

Don’t ask my child to be careful
with “strangers”,
for he is affectionate with
everyone and prey for the
unscrupulous.

Don’t ask my child to “settle
down”,
for the clock which works for you
and me, does not exist for her.

Don’t ask my child to not play
with the toys of others,
for he has no concept of
property.

Don’t ask my child to remember
you tomorrow,
although you met today.

Don’t ask my child to heal your
wounds,
for her hands cannot hold a
scalpel or sutures.

Don’t ask my child to meet the
challenges set by society,
for you have denied her the tools.

Don’t ask my child to forgive you
for standing idly by,
while he was being tortured in his
mother’s womb,

for he will,
but He may not.

www.acbr.com/fas/dontask.htm
9/12/03
Posted here without prior permission.

Written by Jo Lambert.

It is not generally understood or addressed by our society that people with disabilities experience more grief and loss on an almost daily basis than the general public. Much of the grief and loss for the person with a disability is the same as that for the person without a disability. However, the person with a disability has the added dynamic of a daily reminder—the disability itself. . . .

Read at Access Press, www.accesspress.org/archive/2006/09/story_pwd_face_grief_loss_issues.htm

Originally from Life After Loss by Kathy Sherer, Ph.D. (From the University of Texas, Counseling and Mental Health Center). Updated in 2005

The Manual for Congregations from Bethesda Lutheran Homes and Services is an 80-page resource for congregations planning the development of disability ministries. The
construction-theme manual contains chapters on developing a vision, recruiting leadership and volunteers, community evangelism/marketing, teacher training and a “toolbox” of assessments, evaluations forms and other helpful items.

See www.blhs.org/resources/spiritualResources/catalog/item.asp?item=Building%20a%20Developmental%20Disability%20Ministry%3A%20A%20Manual%20for%20Congregations.

She Said: Haddayr Copley-Woods on parenting a special needs child

There are days when I think I am completely unable to cope.

I suppose every parent comes to this realization at some point. That’s when those who don’t believe in spanking find themselves smacking a bottom, the ones who went through years of yoga connecting with their inner centeredness start screaming until their lungs hurt.

Or, if you’re lucky, it’s the moment the kids have finally stopped whining for a drink of water or demanding another story and you can stumble downstairs and stare at the sink full of dirty dishes and pour yourself a large, stiff drink instead.

My most recent realization that I could not cope came last Tuesday when my son Arie’s therapist sat my husband Jan and I down and firmly but gently presented the evidence that Arie not only has Tourette Syndrome (he was diagnosed last January), but also Asperger Disorder.

The diagnosis wasn’t terribly surprising. I have several friends who are Aspies, and I have read about it. I pay close attention to my children, and I am smarter than your average bear.

But when it was confirmed by a professional, I mentally curled up into a tiny ball and started babbling. I was amazed to hear myself saying calmly: Yes, I’m not surprised; we were expecting something like this. I watched my hand patting my husband’s knee consolingly. It’s not like it’s cancer, I said.

There are times (when Arie is flailing, shrieking, hissing and spitting in public because his sleeves have become slightly twisted inside of his coat) I wish I had a T-shirt for all who stare disapprovingly in my direction: “My child has Asperger’s, Tourette’s and Obsessive Compulsive Behaviors with just a dash of ADHD,” it might read. Or, more simply and more to the point:
“F… y…”

I’ve been having a lot of these “f…-y..” moments lately, and in the strangest places: at work where a colleague talks about how his vacation was ruined, simply ruined, by the bad weather and all they could do was sit in the child-free cabin, reading and sleeping.

On the phone with the parent of a neurotypical kid who, on a whim, let her stay up late to watch a movie. At parties where people tell me they’ve read about Asperger’s and Tourette’s and it isn’t all that bad, really-or conversely, perhaps your son should be in a special school? Oh, how awful, I say, or: How nice for you, or: Yes, I’ve read that, or: No; kids like mine are mainstreamed. Instead of: Stop whining, or: Well bloody good for you.

Because I’m a Minnesotan. We don’t say that to people.

Since news of Arie’s additional diagnosis hit, an astonishing number of people have said: “I can’t think of anyone who is better equipped to handle this-Arie is lucky to have parents like you.”

This makes me laugh out loud. What do I look like from the outside, I wonder, besides a little too thin for Minnesota tastes, freckled and harried? I must look strong, flexible, tough, kind or perhaps creative.

But inside, I am none of those things. I am so tired of schlepping Arie from one appointment to the next that when they say to me brightly: “We have so many interventions that will help Arie and you’re lucky to have a diagnosis at such an early age!” I want to wail: “He’s already getting three interventions a week!” I feel helpless, stunned, exhausted, overwhelmed and incompetent most of the time.

But I can do one thing no one else can: I can love my son. Jan and I can stand there and talk to principals who rear backwards as if they’ve been bitten when we say “Tourette’s,” and we can love our son far, far more than others fear him.

And we can hold up our weary hands to fight for him, or (and we have been enormously blessed in this regard) shake hands with people who want to help him almost as much as we do. We can learn from him and about him, and apologize when we lose our tempers, dispense hugs and kisses, and then we can put our heads down and slog ahead some more.

Why anyone thinks that we are uniquely suited for this task is beyond me-we are plain, ordinary parents. He is ours, we are his, and that will have to be enough for now.

Haddayr Copley-Woods is a mom and writer living in Powderhorn Park.

FFI:
Asperger Disorder www.asperger.org
Tourette’s Syndrome www.tsa-usa.org

In January 2008, the Chicago Theological Seminary will be offering a course by Craig Modahl called “Theology, Ministry and People with Developmental Disabilities.” This course will explore the multiple issues facing people with developmental disabilities. Central to the course will be the implications for ministry on the part of religious leaders and their communities. For more, visit Craig’s Comments (#6) on Seminaries and Seminarians in the Networking category of this web site.

The Adventures In Community camper quilt will be displayed at the Disabilities Ministries Art Show at the Conference, Annual Meeting. It symbolizes the special companionship ministry that developmentally challenged partners and companion campers share.

Camp chaplain, Rev. Bob Brauninger, admires the rapport between particularly challenging campers and companion camper Jeannette Blaser. “Jeannette is good at sensing the fine line between doing something for someone and knowing when they can do it for themselves.”

“Developmentally challenged persons do not come with a recipe card,” the retired school teacher/superintendent from Columbus says. “We try this and we try that. Each one is special, a person first.”

She mentions a man from her cabin. “Neat as a pin. Everything had to be right. His parents had planned his life. By camp’s end, he was really opening up. When I asked if he was coming back, he said, `Are you going to be here?’ I said, “Next year, try tubing.’”

Bob appreciates the honesty of campers’ feelings about themselves and the rest of the world. Despite all that has happened to them, most feel secure that God is, and that God is watching over them. Some lack verbal capacity to reflect on scripture, others can. All get involved with their own faith through cabin group conversation at devotions and vespers.

He admires the tenacity of campers despite the challenges confronting them, particularly when physical and developmental difficulties are combined. “Some have a hard time walking as well as a hard time figuring out what to do. Their determination often results in accomplishing what they set out to do.”

He prized the perseverance, understanding, and accepting attitude of one camper-very slow to form his thoughts. When he was ready, people listened and respected him. “Through the years as his physical challenges increased, I learned to understand their power. As much as we both wanted him to participate, we had to find a more comfortable participation level. Once, I asked what in his life allows him to just get up and keep going after each time he falls? He said, “God walks with me. I’ll just keep going and be all right.”‘

Judie Luther, Conference/Regional Minister for Outdoor and Youth Ministries, sees AIC challenging campers to walk and do out-of-doors things they normally would not do - tubing, canoeing, time with farm animals. A camper who manages the task of eating feels much better than if someone else assumes that she needs assistance and takes over for her. Another, who cannot speak clearly, is invited to share what is on his mind. He appreciates and grows from that. The camp dance gives some who stumble when walking another chance at self-expression.

Joyful in the love campers have for the camp, each other, and the leadership, Judie also recognizes AIC as a fine alternative camping opportunity for companions who give something of themselves. Campers range in age from 18 to 70 and can manage personal needs. About 75 are returnees. “Their able-bodied, companion campers need not be athletic,” Judie says: “Older high school student aids; university students from developmental classes, and retirees, some in their early 70s, find themselves patient companions who are interested in understanding what this person is all about and what that person’s challenges are.”

For art show entries or questions, contact Dee. Please inform her about artwork, poetry, sculpture, or a reflective paragraph from anyone acquainted with disabilities. Entries will be considered for an Annual Meeting display that will increase awareness and understanding. - db

Reading the Signs columns are Can-do Forums about accessibility for the whole church family shared by the Nebraska Conference for your use.