UCC Disabilities Ministries

In adverse situations, a sense of impossiblity first overrides all else. However, feeling overwhelmed by the “I can’t” does not necessarily mean that we “cannot.”

It does not mean that we have sunk. It means that we are facing the truth of being unable to do something according to original plans. That is all it means.

The temporary despair that accompanies a sense of being overwhelmed quiets as we figure out another way to do what is important to us.

Limits just are.

from Dee Brauninger’s Holy E-mail

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

I am writing to ask you for a few minutes of your time. I am working on gathering some data which will be included in the workshop I am helping to create focusing on young adult ministry. The workshop will be offered at the September 29th Annual Meeting of the Massachusetts Conference, United Church of Christ.

The survey that I have created is geared toward current young adults, those in the age range of 18-40. The survey can be found here:

How can you help????

Print this request in your Sunday bulletin or newsletter. Email it out to your friends, co-workers, sons, daughters, nieces, nephews, etc. All you need to do is include this link:

www.surveymonkey.com/s.asp?u=719723571730 . The survey taker just needs to click and go through the questions.

If you personally fall into this category, please take a few minutes to complete the survey. www.surveymonkey.com/s.asp?u=719723571730

If you are a clergyperson and have YAs in your congregation (remember we’re targeting 18-40 year olds) please pass this on to them so they can fill out the survey. Don’t stop at YAs, themselves… If you have parents, grandparents, aunts, uncles, co-workers of YAs in your congregation please pass it on!

We would LOVE a large sample…the survey takers DO NOT need to be any particular religion/denomination!

All the information will be kept anonymous (we don’t ask for names at all!) and details will be changed to protect identities should the need arise.

If you would like the results of the survey (modified if necessary to protect identities), please be in touch with me directly.

Thank you in advance for your assistance!

Peace and Blessings,

Kris

Kris LoFrumento

Program Coordinator of Young Adult Ministries

Massachusetts Conference, United Church of Christ

One Badger Road

Framingham, MA 01702

508-875-5233 x274

lofrumentok@macucc.org

Four recipients will be awarded the Bob and Joyce Dell Award (Mental Illness Ministry) and the Disabilities Ministries Award at General Synod in Hartford, said the Rev. Denise Thompson, Executive Director of the United Church of Christ Disabilities Ministries, in a recent announcement.

Two youths, sharing a contagious joy and enthusiasm for life, will join a pastor as recipients of the Disabilities Ministries Awards.

Tyler Greene

Tyler Greene, whose church home is the First Congregational United Church of Christ, Waterloo, Iowa, produced a training video titled “I’m Tyler.” The tool is being used nationally in faith communities, schools and organizations.

“Tyler encourages others not to label people in terms of their ‘disability,’ but to appreciate others in terms of their ability,” said the Rev. Timothy J. Ensworth, his pastor.

Joseph Maki

Joseph Maki is an eager volunteer at his church, Zion United Church of Christ, Le Sueur, in his community and at Pilgrim Point, the Minnesota Conference camp. “The United Church of Christ and its members have opened the doors for him,” his mother, Laura Maki, said. “He has accepted that invitation and is doing what he can to help others learn about our Lord through his service to others.”

The Reverend Dr. Robert Loesch

The Rev. Dr. Robert Loesch, now pastor of Taborton Zion United Church of Christ near Sand Lake, New York, was nominated by Foster Memorial Church United Church of Christ in Springfield, Massachusetts. “Bob has spent most of his life advocating for persons through church and community leadership in several human service agencies working to support adults with disabilities, especially those with mental illness and developmental disabilities,” said Karen Cardigan, Program Coordinator of the Western Massachusetts Training Consortium.

United Church of Christ Disabilities Ministries awards are given in appreciation for distinguished service to church and community in the interest of furthering the church’s mission to become Accessible to All.

The First Congregational United Church of Christ of Downer’s Grove, Illinois

The First Congregational Church United Church of Christ of Downer’s Grove will receive the Bob and Joyce Dell Award. Pastors are the Rev. Laura and the Rev. William Hoglund. The citation from the Mental Illness Network (MIN) recognizes a local UCC church or person who has done much to eliminate stigma, build a ministry, or advocate for legal protection for persons with serious mental illnesses.

“The church has been active in mental health ministry for many years with a comprehensive outreach to the community as well as to in-house services,” said the Rev. Robert Dell.

With delight, the United Church of Christ Disabilities Ministries received word yesterday that the Reverend Virginia Kreyer will be awarded high recognition as an ordained woman in the denomination. With equal delight, the spirited foremother of the UCC DM responded in a late afternoon phone visit, “I’m coming. Tell them I am coming to Synod.”

“Virginia’s pioneering and trailblazing ministry must be seen within the context of her being born with cerebral palsy, which was manifested in her motor skills and severe speech difficulties,” said Gay McCormick, UCC DM representative to the Office of General Ministry.

“In addition to beginning the UCC DM, Virginia is a role model and a prophet,” McCormick said. “To know the importance of her qualities it is necessary to understand that she required years of physical and occupational therapy as well as extensive speech therapy, and, that as a child, she was perceived as mentally retarded because of her speech.”

Virginia’s mother was pivotal in how Virginia became who she is. She never allowed her daughter to use her disability as an excuse. Believing that a disability is not something you hide, she imbued Virginia with her quality of dogged persistence.

“In Virginia’s high school and college days she had felt God’s call to work in the church. It was a call to make this world a better place in which to live, but ‘Who would ordain a “handicapped” woman?”’” the writer of her nominating letter said.

A year after Virginia graduated from college she became a student at Union Theological Seminary in New York, but not before her first application for admission was rejected. With the assistance of clergy and Union faculty who supported her, she was admitted as a full time B.D. (now M.Div.) student.

Her speech difficulties were a problem. The professor of preaching at first saw no reason that she should take his course. Finally he relented and at the end of the course told Virginia, “You are a good preacher.” While at Union she received the unmistakable message God was saying to her, “ Stop questioning your call to ordination,” and so she did.

After her graduation from Union Theological Seminary she was ordained (in another denomination) in 1952. She then found employment at the Nassau County (NY) Cerebral Palsy Center. Her hope of being a chaplain to the clients and their families was not the intent of the Center. It had employed her to be a role model of what a person with CP can accomplish. Virginia was not at all satisfied just to be a role model and, as a consequence, started a Masters degree program in social work, receiving her degree in 1960. She became a staff social worker at the Center, working there until 1984.

In 1967 she began attending Garden City Community Church, a UCC congregation, becoming a UCC member in 1971. Then she began a long process of being ordained in the UCC. She suggested to the Association Committee on Ordination and Standing the beginning of a committee for persons with disabilities called handicapped / physically challenged. She became the chairperson of the new committee.

Over the next five years that committee tried to get the UCC in New York involved in this advocacy work. Nothing happened until a committee member suggested writing a resolution on persons with disabilities and presenting it to the New York Conference meeting in 1976.

The resolution was passed and the next year was taken to General Synod. This resolution, ‘that the national church begin work with persons with disabilities,’ was passed but not before Virginia had to speak very persuasively, first, before a Synod committee and then, secondly, address the whole body of the 1977 General Synod. She spoke of how Jesus spent his ministry teaching, preaching and healing, incorporating all three in his ministry.

In response, not only did General Synod pass the resolution, but ministry to and with persons with disabilities became one of that Synod’s top priorities. The persons with disabilities resolution was assigned to the United Church Board for Homeland Ministries (UCBHM), Division of Health and Welfare to be carried out.

The previously mentioned 1977 resolution opened up a one day a week consulting position. The position was offered to Virginia and she accepted with vigor, though it took awhile to negotiate this change with the Department of Social Services at the United Cerebral Palsy Center. With Virginia as the Consultant for persons with disabilities, she worked with churches struggling to educate them about the needs of persons with disabilities, particularly focusing on what they should be doing to make their church buildings accessible and welcoming to all including persons with disabilities.

A questionnaire was developed and mailed to all churches in the United Church of Christ. The response showed that fewer than 10% of our churches were physically accessible and in some cases they, too, had problems. She traveled over the country preaching, teaching, and giving workshops to help people understand the ‘how’ and the ‘why’ of welcoming persons with disabilities.

Due to Virginia’s dedicated, persistent work, additional resolutions were passed affirming full inclusion of persons with disabilities in the church in the next three General Synods. At General Synod 14, accessible churches were recognized. At GS16 a resolution was passed which advocated for the (a) full participation of persons with disabilities in the life of the church and in society and (b) directed the Pension Board to develop insurance coverage for employees at the time of onset of a disability. All were significant changes, changes attributable to Virginia’s leadership. Texts of all UCC Disabilities Ministries and Mental Illness Ministries can be found on www.uccdm.org.

In 1991 she attended the Consultation on the Disabled in preparation of the World Council of Churches (WCC) and then served as a UCC delegate to the World Council, working on issues of disability rights. She continued her advocacy work until 1995 when she retired.

Also, at this time, she became a member of the National Council of Churches of Christ (NCCC) Committee of the Disabled, and then a member of the Board of Directors, 1977-1995. Committed to advocating for persons with disabilities in the National Councl, she was a highly effective advocate.

Concurrently, Virginia was asked to serve as a representative of and for persons with disabilities in 1979 in what became the UCC Coordinating Center for Women. She frequently led the Holy Communion service for the agency.

Virginia lived in Garden City, NY, and was a member of Garden City Community Church, her home throughout all her years of service to the UCC and persons with disabilities. In 2002 she moved to a Williamsburg, VA, retirement community where she now lives.

Reflection

Hope is something we have to choose. God is someone we have to seek. Sometimes a single sentence is tghe most we can call out to God. Sometimes our best is only a few words or only a God-directed sigh. Sometimes wheen we need to have God near, we need more encouragement than we can summon through our own pep talks. It is not enoughh for us to snatch at hope like a bird flitting from limb to limb snatches at rose hips in a bier thicket. We need to embrace hope, choose hope, and grab on to hope with all our might.

- Dee Brauninger

I was a minister

code blue
hand aching from the grip of
mother or sister, “chaplain,oh,
chaplain”
my self embodying the
grasp for hope
in a place where words
are never enough

I was a minister

“Why would God?’
“Why did God?’
“I must be bad, go away .”
I go and I return.
No pat answers.
Just this odd woman of God
willing to ride out the storm.

I was a minister

now my body is broken
and I must buy it
buy that my will alone cannot
drive me to
Work harder
stay longer
be the best, oh,yes

Am I a minister?

Some days I cannot remember
my phone number
and the tasks of survival
occupy me
I am too weak to work
too weak to drive
too weak
too weak

but what was that bit
about “treasure in clay jars”
cracked pots
crackpot, certainly

I am a minister

I heard my call
it was not a mistake
I cannot do
and so I stand quiet
clutching shattered Grace
in both my hands,
listening ,again,
for that Voice

Deb Smith retains copyrights for her poetry. Bio__Deb Smith graduated from PSR and was ordained in 1984. I spent most of my career as a chaplain in physical, psch, and chem dependency hospitals, but was also a Licensed social worker and pastoral counselor.

I started getting tired about 16 years ago, but my energy has always been so high. I just figured it was overwork. Ten years ago I had to leave a doctoral program in psychology and religion after my first year, due to constant illness and fatigue. For years (two of them bedbound), I had a diagnosis of “yes, you’re sick, but your tests are fine.” This is important,
because I could not apply for social security disability without a specific diagnosis.Atypical hypothyroidism was finally settled on. The meds got me out of bed, but not functional. I have adrenal insuffeciency, gluten intolerance, fibromyalgia CFIDS, chronic Epstien-Barr.

A friend with a visible disablity since childhood talks about having to convince people she could do things;I have to convince people I can’t do things, as my disabilities are invisible. I miss respect, am occasionally considerdes lazy, viewed with contempt or having a “vacation.” My dog and cat love me as I am an I am determined to get well enought to contribue to society and to have some FUN.

Donated Dog For Autistic Child Meets Opposition

By Steve Stoler, WFAA-TV, Dallas - Ft. Worth, TX.

tinyurl.com/ynjurw

WYLIE - A mother’s fight to make life easier for her four-year-old autistic son got a helping hand while also meeting up with a barrier.

Lori Ruscitti’s friends and neighbors came together and raised enough money to buy the family a service dog. But there’s one big problem, his school district won’t allow dogs to attend class.

Every day is a constant struggle for Colton Ruscitti, who is autistic. Last year, the boy wandered away from his home and fell out of a two-story window.

“We can’t watch him 24-hours-a-day,” Mrs. Ruscitti said. “It’s impossible. We need help.”

Help came in the form of a dog named “Charlie,” who is a specially trained service dog the family hopes will keep Colton safe and secure. The Wylie and Murphy communities helped raise $14,000 to give the family the dog, which will happen in May.

“That dog provides security for them,” Ruscitti said of the easing effect dogs have on autistic children. “It helps calm them down. It reduces meltdowns.”

Mrs. Ruscitti met with Wylie Independent School District officials who listened, but announced that Charlie will not be allowed into the classrooms.

“[I feel] disappointment because autism is so rampant,” Mrs. Ruscitti said. “It’s not going anywhere. This is just another tool to help these children.”

WISD Superintendent John Fuller gave a statement Wednesday that said the district doesn’t allow pets in classrooms, including dogs. The only exception is the use of service dogs that are trained to provide assistance to students with special needs such as blindness, physical disability or lack of mobility.

There was no mention about autism.

“Wylie just needs to step out of their box,” Mrs. Ruscitti said. “There’s not really a downside to allowing this dog in school.”

A final decision on Charlie could be made by a special needs committee before the start of the next school year.

[Ed.: Permission was not requested to reprint this story. It was sent in by a parent of a child with autism.]