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

Four recipients were awarded the Bob and Joyce Dell Award (Mental Illness Ministry) and the Disabilities Ministries Award at General Synod in Hartford, 2007.
Read the rest of this entry…

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. Read the rest of this entry…

Meditation

Hope is something we have to choose. God is someone we have to seek. Sometimes a single sentence is the most we can call out to God. Sometimes our best is only a few words or only a God-directed sigh. Sometimes when we need to have God near, we need more encouragement than we can summon through our own pep talks. It is not enough 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 excerpted from Holy E-Mail

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.]