The Hills Are Alive with the Sound of Music

This week "Sound of Music" played on TV. Jeff would have loved it! The following is an excerpt from Journey With Jeff; Inspiration for Caregivers of People with Special Needs, titled, "Following My Vision," with a quote from Habakkuk 2:2,3 -- "Write the vision; make it plain upon tablets... For still the vision awaits its time...If it seems slow, wait for it; it will surely come, it will not delay." ~~~ The overture to The Sound of Music from the TV filled our living room. Jeff and Jennifer had settled down to watch the movie following a full day with company after church. Despite the seizure Jeff had had at midnight last night it had been a good day! We were keeping watch to see how these attacks might be afftecting his whole body's system. He seemed to recover more quickly than his dad and I! ~~ All was done in the kitchen, and I joined them in the living room just as the sisters began their "Hallelujahs" in the abbey. Even Jen sang along. ~~ When it was time for the Mother Superior to tell a bewildered Maria, "You have to live the life you were born to live," I could taste the tears the next song would bring. The words struck a chord in my heart as she sang: A dream that will need all the love you can give, every day of your life for as long as you live! ~~ My dream was that Jeff would be as normal as possible - a whole personality through whom God's love would shine! That dream would need a refreshing and revitalizing every day of my life! ~~~ Lord God, I give everything up to You. You are in charge! Bring good out of these seizures, Lord, as only You can! Thank You! Amen."

A Walk In My Shoes by C. Waeltermann

Twas the Night Before Christmas ~~ Autism Style
And all through the house the creatures were stirring, yes even the mouse.
We tried melatonin and gave a hot bath but the holiday jitters they always distract.
The children were finally all nestled in bed
when nightmares of terror ran through my own head.
Did I get the right gift, the right color and style,
Would there be a tantrum or even, maybe, a smile?
Our relatives come but they don't understand
the pleasure he gets from just flapping his hands.
"He needs discipline," they say, "Just a well-needed smack,
You must learn to parent.." and on goes the attack.
We smile and nod because we know deep inside
The argument is moot..let them all take a side.
We know what it's like to live with the spectrum
The struggles and triumphs, achievements, regressions....
But what they don't know and what they don't see
Is the joy that we feel over simplicity.
He said, "Hello." He ate something green! He told his first lie! He did not cause a scene!
He peed on the potty, who cares if he's ten, He stopped saying the same thing again and again!
Others don't realize just how we can cope, how we bravely hang on at the end of our rope.
But what they don't see is the joy we can't hide
when our children with autism make the tiniest stride.
We may look at others without the problems we face with jealousy, hatred or even distaste.
But what they don't know, nor sometimes do we is that children with autism bring simplicity.
We don't get excited over expensive things. We jump for joy with the progress work brings.
Children with autism try hard every day - that they make us proud more than words can say.
They work even harder than you or I to achieve something small, to reach a star in the sky.
So to those who don't get it or can't get a clue take a walk in my shoes and I'll assure you...
That even 10 minutes into the walk you'll look at me with respect, even shock.
You will realize what it is I go through and the next time you judge I can assure you
That you won't say a thing, you'll be quiet and learn,
like the years that I did when the tables were turned. (www.autisticliving.com~~Photo-Jeff's sister's Christmas gift for him.)

Merry Christmas to My Readers!!

One day I visited our Brockport Library to check out the number of times their copy of "Journey With Jeff" had been borrowed, and found 8 due dates listed! Yay!!!! Maybe someday soon I shall be able to check out the six other town libraries where "Journey" lives?~~~The day before Christmas I received an e-mail from a mother who wrote: " I recently borrowed your book from the library, and I have started reading it. I am finding it fascinating and very uplifting, and I can relate because years ago we found out our daughter was profoundly deaf. As I read your book, I keep thinking of other people I would like to recommend it to. I tried to purchase it today at Borders but they said it was out of print. Is there a way to still order it?" Immediately, and with great joy I e-mailed her back: "If you live in Brockport you can buy "Journey With Jeff" at Liftbridge Book Store, or Salvation Station. If you live in Greece, you can order it from Barnes & Noble. You can also order it from Amazon.com, or, I can send you a copy. The cost in the stores, and at Amazon.com is $17.95. Covering shipping and handling, I can send an autographed copy to you for $20.00~~Whatever's best for you and for the other people to whom you'd like to recommend it." And of course, I invited her to take a look at my blog at this website. (Photo is the author with the CD of "Journey With Jeff,"which entered the Brockport Library about a year before the book edition.)

Hello From the Past!

Thirty-plus years ago a teenage gal in Dunkirk named Diane babysat with Jeff for us. Today she wrote an e-mail introducing herself again. She said: "I have a funny story I remember about Jeff -- I was babysitting one time and he proceeded to move some of his bedroom furniture out to the front yard -- do you remember that? I didn't know what to do about it, but let him carry on because it made him happy!" No, I did not remember that! Wish I knew what he was thinking as he wrestled it down the stairway!! ~~~Diane had received a Christmas card from Bishop Marie and Pastor Jim Jerge (who had married her and her husband) so she decided to explore the Upstate NY ELCA Synod website. She came across Marie's review of "Journey With Jeff," and said I still had that warm, kind face she remembered as a little girl, then asked to purchase a copy of "Journey." We wrote back and forth for an hour and a half -- What a bonus!! (Photo is of Jeff at 14, when we still lived in Dunkirk.)

Local Authors' Extravaganza at Liftbridge

This was the third Local Author's Extravaganza I've attended, and the largest one yet! It's great to bask in the energy of writers, known and unknown, and to meet new ones. There were refreshments, and a chance to talk with others about their books, and 5 - 10 minutes for each author to read excerpts from his or her book ~~ some good, and some just not my style. I chose to read "Welcome to Holland," by Emily Peri Kingsley (permission to include it in "Journey" granted by the author,) and "Jeff's Delight" about his love of music. Then I added the response I received from a mother in GA, who said, "In short, what I want to say is that "Journey With Jeff" has helped me to work through the last of my 'mourning' over the loss of the child I'd hoped for and welcome with open arms the trip to Holland instead." I am saving all these responses with the hope to include them in a sequel about how Jeff has blessed so many with his story. ~~~ One of the people attending this event was a legally blind, little person who is studying Social Work at Brockport SUNY. Very interesting to talk with, he bought "Journey With Jeff" in book form and as a CD, asking me to sign them both. Perhaps he'll be a key to having a professor use this book as a text for his or her class?!?!? That will certainly get "Journey" out there!!!!

Life at Jeff's Fullest Potential

Brenda is one of the Lifetime Assistance Inc. workers at Main Street, Brockport who bought a copy of "Journey With Jeff" earlier this year. Brenda recommends: "Journey With Jeff deserves a 5 Star Rating. This book has a message for all. Sybil's story about Jeff showed me his life, through her 'eyes and heart.' I saw and felt her challenges and pain. I wondered how she found the courage to keep going. Her determination to keep going even at times when she questioned the 'why of it all' is inspiring. She could have adopted that 'pity me attitude.' She did not. She took each day and found the true meaning of the little things that make up the life of a child. In Jeff's story, there is a message for all. The message is of Jeff's determination to live his life to his fullest potential and his Mother's courage to make sure that was possible. Sybil is an inspiration."~~~Thank you, Brenda!!

A Review of "Journey With Jeff"

One of the people who works with adults with Developmental Disabilities at Lifetime Assistance, Inc., wrote the following about Journey With Jeff: "I loved this book!! I read it a few months ago...and I learned so much. I work with adults that have Developmental Disabilities...and I learned more from this book than conferences I have attended. Sybil writes from the heart...and I learned such wisdom from her book, not just about Developmental Disabilities...yet about life, and positive and realistic perspectives. Hearing from a mother/parent perspective was so helpful in the field I am in...I feel this needs to be a training tool for anyone going into the field of helping people with Developmental Disabilities. Thank you Sybil for sharing your experiences, family, and good wisdom!

Grant Me the Serenity to Accept the Things I Cannot Change

Today I was surprised by the turn of a conversation with a colleague at our Lifetime Assistance Inc. December meeting. Discussing writing and my present marketing of "Journey With Jeff" I mentioned I'm thinking about a second book which would include the responses of people who had read "Journey," especially the mother who wrote that she could finally work through the last of her "mourning" over the loss of the child she'd hoped for, and was now ready to accept her son just as he is. ~~~"That's why I appreciate your book about Jeff," my friend said today. "My husband has brain injuries from an auto-motorcycle accident six years ago, and I also have had to get to the point of saying, 'Yes, this is who he is now - not the same man that I married." She shared how she and her family have dealt with this 'mourning,' this dose of reality, this grounding of expectations for who he is now. Not only is she a caregiver with LAI, but one at home as well. I offer her my deep respect! (Photo-Garden Step imprinted with Serenity Prayer.)