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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Sunday December 23, 2001
INDEX:
* The Christmas
Lesson
* For those of you who have children that believe in Santa
* Inflammatory Bowel Disease
* A special message from CAN Co-Founders, Jonathan Shestack and
Portia
Iversen
* Christmas Debt of Gratitude
* The California NIDS Coalition presents:
* 10 Year Old Autistic Child Arrested
******************************
The Christmas Lesson
This is a true story and I believe that its message is an
important one. Although the setting is Christmas, it is not truly a Christmas
story. Rather it is a story of love, of giving, and of family.
My three brothers and I were raised in a relatively typical household in a
small city in central Massachusetts. Most of my childhood memories are good
ones, and the best memories center around the holidays. Halloween, birthdays,
Independence Day and Thanksgiving were all very special around our house. But
nothing -- nothing -- could hold a candle to Christmas!Every Christmas was
steeped in unique holiday traditions. These rituals were as constant as the
Christmas star and this consistency brought great comfort and excitement to me
and my three brothers. The series of events was unwavering: on the afternoon of
the day before Christmas, my Dad would give each of us a five dollar bill. Our
task (and our great joy!) was to go to our town’s Main Street with a mission:
to buy a gift for each member of the family. One dollar per gift. Careful,
thoughtful, selective shopping could stretch that dollar very far! Upon
returning home from our shopping spree, we would wrap the gifts and prepare for
the rituals that were Christmas Eve. Again, the sequence of events never varied
-- a special Christmas Eve dinner of spaghetti and meatballs, followed by The
Opening and The Reading.The Opening was a time-worn tradition whereby each of
us could select one gift from under the tree to open after dinner. Great
planning and forethought accompanied the selection of the gift that we would
open and I had recurring nightmares of opening a brightly colored box on
Christmas Eve and finding mittens! The correct choice was, of course, a toy or
game to play with before retiring on Christmas Eve.Following The Opening came
The Reading. My father would gather the four of us around his overstuffed chair
and read us Clement Moore’s classic “Twas the Night Before Christmas” poem from
a battered old book held together with electrical tape. Pages were torn and
missing and I am sure that he was forced to recall much of it from memory.
Certainly thousands of American families followed an identical ritual, but to
us it was uniquely ours.After The Reading, we played with our newly opened toys
and prepared (reluctantly) for bed, sugar plums and so on. Like all little
boys, we would whisper long into the night. We fought the age-old battle of
wanting to stay awake -- but knowing the consequences of being wakeful when He
arrived.On December 24, 1957, I was eight years old and my brother Jim was
five. We were very close and shared an exceptionally warm relationship. He was
my brother, but he was also my friend! I cherished that friendship then as I do
today.On that day many, many Christmases ago, we began the rituals as tradition
would dictate. I did not know that I would learn a lesson that Christmas that
would stay with me for a lifetime.It was bitterly cold and the town was
blanketed with snow from three early, but welcome, snowfalls. Jim and I were
clutching our crisp five dollar bills as we ran toward Main Street to buy
gifts. Past the jewelers, past the hardware store, past the bowling alley, we
headed for our ultimate destination: W.T. Grants! Nowhere else on the promenade
could two eager brothers convert five dollars into valued gifts for our five
loved ones. I was rummaging through the orange boxes of Hartz Mountain Hamster
Food for my brother Tom’s menagerie when Jim came up behind me. “I found it!”
he squealed, “I found it! The perfect gift for you -- it’s the best! Wait until
you see it. You’ve got to open it tonight!”I cannot recall ever seeing Jim so
excited and he jabbered about the special gift for the rest of the excursion.
During the walk home he continued to attempt to secure a promise from me -- the
promise that I would select his gift to open that night after supper. I was
unwilling to commit to this course of action, although I was leaning in his direction.
After all, Jim knew the rituals as well as I did and he surely would not select
a gift that I could not play with on Christmas Eve!As we walked home braced
against the cold December wind, Jim continued his onslaught. Suddenly, in
mid-sentence, he stepped on a patch of ice that was covered with a light
coating of snow. His feet went out from under him and the precious parcels that
he had been clutching tightly to his chest flew out of his hands. In mid-air,
in the manner of a cartoon character, he shouted, “Don’t look Rick -- I don’t
want you to see your present!”The Grants bag slid across the ice, tattering and
tearing as it skidded along the surface, and came to rest against a small snow
bank. As it lay there, I could clearly see the gift that Jim had purchased for
me: a Jumbo Santa Claus Coloring and Cut-Out Book complete with Tracing Paper.
A fine gift, indeed.“Did you see it? Did you see it?” Jim stammered as he
leaped on the bag. I assured him that I hadn’t (after all, I was the older
brother) and he calmed down quickly. We continued our journey home and Jim
maintained his constant stream of requests that I select his gift as the one to
open that evening. Now I had a dilemma. I knew how badly Jim wanted me to
select his gift -- but it was my Christmas, too. And, frankly, my eight-year
old mind saw little purpose in opening a coloring book on Christmas Eve -- not
when Uncle Dave’s packages generally held a truck or a gun or (dare I wish) a
Slinky. Throughout the late afternoon, Jim used every opportunity to continue
his public relations attack. The more he pleaded, the more firm I became in my
resolve that I would open Uncle Dave’s gift -- although I never shared this
information with Jim.I was puzzled by Jim’s ongoing barrage. It was unlike him
to be so insistent. And this situation was not in keeping with the sacred
traditions of the Christmas Eve ritual -- that each family member was free to
make this decision independently, without interference or undue pressure. Such
unspoken rules are our only defense against holiday anarchy!We sat down to
supper and, amid the clatter and chatter, Jim continued to plead his case.
Finally, my father interceded and reminded Jim that this was Rick’s decision.
My father then looked at me and I believe he was assured that I would do the
right thing. He had more confidence in me that I did in myself. Following the
meal, we encircled the tree for The Opening. Jim thrust the gift into my hands
and looked at me hopefully. The size and shape of the gift confirmed that it was
indeed, the coloring book. My decision was made. I did not want to disappoint
Jim but I was not going to be put in the position of coloring all Christmas Eve
while my brothers played with real toys. I would open Uncle Dave’s gift -- and
Jim would have to understand. I would open Jim’s gift Christmas Day. And I
would let him color in it with me after church services. But Christmas Eve was
a night for toys.I put Jim’s gift back under the tree and picked up Dave’s
present. I shook it, listened to it and held it up to the light. Yes, this
would be my Christmas Eve gift. When my turn came, I tore it open. Dave had
surpassed my wildest expectations -- a Mattel Fanner 50 Repeating Cap Pistol. I
turned to show my new prize to Jim and was surprised to see him sitting on the
couch, tears in his eyes and his gift to me in his lap. He fingered in gently,
lost in thought.“What a baby” I thought. I could not believe that he was going
to allow this to spoil his Christmas Eve. My mother called Jim to the tree and
told him that it was his turn to open a gift. He selected one, almost at random
and slowly tore away the wrappings. It was a Mr. Wizard Junior Chemistry Set!
Surely that would bring a smile to his face. But it didn’t. He opened the box,
looked at the chemicals and plastic test tubes, and put it back under the
tree.As my two older brothers and I played, I couldn’t help but notice Jim. He
sat quietly in my father’s big chair in his blue pajamas holding his gift to me
on his lap. I was confused -- and maybe a little guilty -- but it was Christmas
Eve, and my job description as an eight-year old required playing and
frolicking. So play and frolic I did.After an hour or so, my parents restored
order and we all gathered around my father’s chair for The Reading. He took out
the battered old “Twas the Night Before Christmas” book that sat on the
book-shelf 364 days of each year and began to read the holiday classic to us.
We all laughed as he struggled to hold the loose pages together while he
ad-libbed missing passages. We all laughed, except Jim. He sat sullenly; not
angry, not sad -- just dejected.We finished the story and were hustled off to
bed. I tried to strike up a conversation with Jim but he responded with
monosyllables from the bottom bunk. I tired of trying to cheer him up and as I
drifted off to sleep, I could hear him crying softly below me.At dawn, we all
bounded from bed and into my parent's room. Slowly we walked down the stairs to
behold the sight we had been anticipating for months. The living room was
filled with toys, boxes, games, stuffed animals and sleds. Chaos followed with
shouts of “Whose is this?”, “Just what I wanted!” and “Look, Mom, look!” It was
a spectacle, and even Jim appeared to be getting into the spirit of the
moment.I was sitting next to my brother Tom as he opened his gift from Jim. As
he tore away the wrappings, I became confused. His gift was a Jumbo Santa Claus
Coloring and Cut-Out Book complete with Tracing Paper. As Tom thanked Jim I
thought, “Well, if Tom got the coloring book, what was Jim’s gift to me?”I
walked over to the tree and rummaged through the packages. Finally, I found the
gift marked “To Ricky, From Jimmy.” I removed the foil wrapping to find a brand
new copy of “Twas the Night Before Christmas.”Tears filled my eyes as I scanned
the room for Jim. Our eyes met, then he looked away. I was at once ashamed,
embarrassed, and deeply sad. I had the opportunity to show a kindness to my
brother -- and I didn’t. I had an opportunity to show how much I loved him --
and I didn’t. I had the opportunity to brighten his holiday -- and I didn’t.A
valuable lesson was learned by that eight-year old on that Christmas morning.
He has tried since not to miss such opportunities. The Holiday Season and the
initiation of a New Year provide us all with countless opportunities to
brighten the lives of others. Let’s take those opportunities seriously for they
are precious indeed
http://www.schwablearning.org/Articles.asp?r=401&g=3&d=4
******************************
For those of you who have children that believe
in Santa
Send a letter to Santa online this
year -and Santa answered
right away! The response letter talks about keeping the environment
clean, and listening to mommy and daddy, etc. There are other Santa
fun things to see as well here. Really cute.
If you want to check it out -here is the address of the North Pole
online:
http://www.santaclausonline.com
******************************
Inflammatory Bowel Disease
Regularly updated collection of
Medscape's key clinical content.
Inflammatory bowel disease (IBD) is a term encompassing a number of chronic
inflammatory disorders leading to damage of the gastrointestinal tract. The
most common of these disorders are ulcerative colitis and Crohn's disease.
Because the etiology of both conditions remains unknown, a curative therapy
has been lacking. Previous medical treatment has focused on the nonspecific
suppression of the inflammatory process. However, recent advances in basic
science research have revealed new insights into the role of specific immune
cells and their mediators in intestinal inflammation. Such elucidation has
led to the development of management strategies targeted at altering specific
pathogenic mechanisms that have the potential to modify or change the natural
course of these disease entities. Medscape's Inflammatory Bowel Disease
Resource Center is a collection of the latest medical news and clinical
information on these disorders, with an emphasis on approaches to management.
This resource center includes reports from recent conferences, review
articles, MEDLINE abstract collections, and links to clinical practice
guidelines and other related sources on the Web.
Here's one interesting grouping of links......
Treating Inflammatory Bowel Disease From Top to Bottom
Stephen B. Hanauer, MD
Evolving Expectations and Therapeutic
Strategies in Inflammatory Bowel
Disease
Study Findings on Efficacy of Therapeutic
Options
Anti-TNF-Alpha Therapy With Infliximab:
ACCENT I, Efficacy as
Maintenance
ACCENT I: Study Findings
ACCENT I: Adverse Events
Tuberculosis Related to Anti-TNF Therapy
and An Algorithm for Testing
Conclusions on ACCENT I, A Look Ahead to
ACCENT II
Other Anti-TNF-Alpha Therapies
Rethinking the Treatment Approach for
Inflammatory Bowel Disease: The
Pros and Cons
http://www.medscape.com/mp/rc/usmd/ibd
******************************
A special message from CAN Co-Founders,
Jonathan Shestack and Portia Iversen
Something miraculous has happened at our house over the last year. We always
said that there was a boy in there. We always believed or tried to believe
that Dov understood us, even though he had no way to show us that it was true.
While still non-verbal, and unable to control most of his behavior, Dov has
learned to point to letters on an alphabet board. It turns out that all this
time he was taking in so much. He can read and he can spell, and he has begun
to tell us about himself. He has told us at a very basic level that he thinks
and understands. For the first time we know that red is his favorite color.
School is "boring." His little brother is a "spoiled rotten
kid," and he's
worried when I take a plane trip. Beneath the silence he is intelligent and
emotional.
This revelation has turned our family upside-down. We can't talk to Dov like
he's two anymore, or treat him like a baby. We have to talk to him like a
nine-year old boy. He is a boy - full of understanding. He's intact. He has a
sense of humor. We are so glad to finally meet him.
But on the other hand, it just confirms the cliché, horrible but true, that
he is trapped. And he knows that he is trapped. He knows how alien he appears
to everyone else, and he doesn't yet have a way to use his voice or command
his body to do what he wants. And so our great joy is mixed with some sadness.
And it's not only us. Portia and I know that hundreds of thousands of
children and adults just like him cannot fully communicate, cannot control
their bodies and their behavior. We used to be able to say to ourselves that
maybe people with autism were mercifully unaware. But it's pretty clear now
that at least my little boy is aware that he is autistic. And he doesn't like
it.
The highs and the lows are inevitable, and maybe we're finally getting used
to the idea that the bumps in the road are the road. Through it all, we cling
to our work with Cure Autism Now. We must continue because it is the only
thing we can do for Dov. This is certain.
We must work harder. We must keep making progress. We must attack on all
sides of research and technology. In 2001 Cure Autism Now increased its
efforts in genetics, the effect of the environment, neural retraining and new
assistive technology. And this comes on top of the 21% growth in our basic
research awards.
One day I asked Dov If he was looking forward to growing up. He spelled out
"yes" and I asked him why. He typed out, "I like girls." My
heart did a flip.
What a simple, normal little sentence. And such a handsome young fellow
saying it. But then I looked at him a moment later stairing out on a bag of
marbles, unable to stop giggling, and I thought it's going to be a long
journey to get him where he needs to be.
Still, everything that has happened over the last six years at Cure Autism
Now makes me think that if we can keep this pace up, and maybe even increase
it, we can get him there. The only way we can do this is with your financial
support and your pledge to continue to walk with us on the journey. So when
you make your year-end decisions for charitable giving, please include Cure
Autism Now in your plans.
Each year before I sit down to write this letter, before I tell you that we
are getting closer every day, before I ask you to support our efforts to cure
autism, I ask myself, "Is this false hope?"
I know the answer with perfect clarity. Last year who could have foreseen the
blessings we were to receive? And who can foretell the blessings already on
their way? There is no false hope, only hope.
With warmest regards,
Jonathan Shestack & Portia Iversen
http://www.cureautismnow.org/aboutcan/pledge_drive.cfm
******************************
Christmas Debt of Gratitude
Who
would ever know that the little girl we knew almost two years ago would be here
now. The fight for hope, Jamie's story has a new chapter! Jamie at 23 months
old regressed and was non verbal and aloft to us. We had lost her, so we thought.
Many of you have read Jamie's Short story online and have followed her online
through out our 15,000 link paged website located at 222.AutismAwakening.com.
This is our Christmas Special Update.
You have seen in previous issues how we transition Jamie to see Santa and give
him her Christmas List. We have visited Santa a couple more times already to
get her ready for Christmas Eve Services and Christmas Day. Only this time
something wonderful happened, something we never dreamed we would see with all
of Jamie's sensory dysfunction's and touch issues. After Jamie was done telling
Santa what she wanted for Christmas she leaned over and actually hugged him!
Tears instantly came to my eyes for the little girl who was so aloft in her own
world socially integrated without prompt.
Our family has seen so much improvement since we first began the special diet,
vitamins, and minerals for Jamie's metabolic issues associated with autism.
Today Jamie can talk again, Jamie has a savant in singing country music, As a
just a short few months ago is self feeding, she is putting her cloths on
(shoes backwards sometimes but with prompt corrects them), her aggression level
is gravely reduced,
Jamie does eye gaze now a lot more now that she does not eat the food that she
is allergic to with natural opium's in them like wheat, gluten, and milk, and
so many more improvements can be added to this list.
I am so proud of our little girl and her courage and strength. We are surely
blessed to have our very special little girl! I use to wonder if there was hope
as I began writing my book. I remember every night praying for hope. I am
writing this to tell you there is hope. Do not let anyone tell you it is to
late for your child, or come back when the child is 6.
Jamie still has autism but with time and all the right people placed in her
life ours is turning Jamie will lead a great life. More then we could have ever
hoped for. Who knows if we keep going we may recover to a degree where the
autism is not noticed at all. I never want to see another family go through
what we had to. So if you wonder why we have advocated so strongly for autism
and related issues to autism this is why. We know what happened to our daughter
was no fluke, it was pure and simple beginning the healing of her systems. We
continue to find the rest of the pieces of Jamie's puzzle we continue to move
forward. We teach everyone's life we can touch.
Today we thank our daughters life to Dr. Shaw (Great Plains Lab), DR Stayton
(DAN doctor) who really listened and gave a a plan of action and implemented
it. He still sees us through and helps us find all the pieces. It is always
worth the drive out of state for without his key component we would never have
gotten our daughter back. DR Bernard Rimland who helped us with information and
a shoulder when needed. After talking to him you were left with a direction.
Karyn Seroussi for writing the article in Parents magazine that opened our eyes
and hearts. Lisa Lewis for her dedication with helping children though special
diets, The Aryers clinic for the wonderful information on sensory diets to help
sensory overload. DR Sharon Collins (Jamie's Pediatrician) We searched for her
for over a year but she truly has been the final best piece to Jamie's success.
She follows Jamie and monitors and documents her improvements and medical
conditions in our home state and that follows Jamie. We have built a wonderful
team of doctors for Jamie and many more not even mentioned here. To all of you
We Will Forever Owe You a Debt of Gratitude!
******************************
The California NIDS Coalition presents:
Autism Spectrum Disorders, CFIDS,
ADD/ADHD, and Learning Disabilities:
"A Medical Epidemic and The Neuro-Immune Connection"
An information session on NIDS (Neuro-Immune Dysfunction Syndromes) and the
scientific link to Autism and Autism Spectrum Disorders(ASD) including
PDD-NOS, ADD/ADHD, Chronic Fatigue Syndrome/CFIDS, Speech and Language
Delay,
Learning Disabilities and Social and Developmental Delays. For parents,
patients, medical and education professionals.
Featuring:
Dr. Michael Goldberg, M.D., F.A.A.P.
President, Neuro-Immune Dysfunction Syndromes (NIDS)
Scientific and Medical Advisory Board
www.NeuroImmuneDr.com &
www.NIDS.net
Dr. Julie Griffith, M.D., M.S., C.M.T.
Northern California Center for Learning and Behavioral Disorders
Member, NIDS Medical Advisory Board
NO CHARGE TO ATTEND
SACRAMENTO
Date: Saturday, Jan. 19, 2002
Time:10:00am-5:00pm /Check-in 9-10am
Location: American River College
Raef Hall, Rm #160
4700 College Oak Dr, Sacramento CA
FREE PARKING
SAN FRANCISCO
Date: Sunday, Jan. 20, 2002
Time:10:00am-5:00pm/Check-in 9-10am
Location: U.C. San Francisco
Health Sciences West, Rm #303
505 Parnassus Ave, San Francisco CA
PARKING 3.00 (pay on site)
REGISTRATION: by PHONE: (707)538-2193, FAX: (707)537-7629, E-MAIL:
CureNIDS2000@aol.com or MAIL: Ca. NIDS Coalition, 3444 Anderson Dr., Santa
Rosa, CA 95409
Pre-register by Tue, Jan 8, 2001. No new registrations will be accepted
on
the day of the event. Space is limited, so please register early.
Box
lunches will be provided @ $10.00 ea, reserved only through pre-registration
(Unavailable for purchase the day of the event). A confirmation package
will
be sent to you upon receipt of registration, including driving directions,
public transit info, parking info, and a campus map.
--------------------------------------
REGISTRATION FORM
SPECIFY EVENT:
________SAT, 1/19-Sacramento
________SUN, 1/20-San Francisco
NAME:___________________________________________________________
ADDRESS:_______________________________________________________
PHONE:__________________________
E-MAIL:_____________________________
BOX LUNCH: Enclose $10.00, Check or Money Order made payable to: CA
NIDS
Coalition
_______Roast Beef _______Chicken
_______Vegetarian
_______I would like to donate $10.00 to CA NIDS Coalition to help cover
materials costs.
________Please add me to the NIDS news list.
SEND FORM TO: CA NIDS Coalition, 3444 Anderson Dr., Santa Rosa CA 95409
FAX: (707)537-7629, E-MAIL: CureNIDS2000@aol.com , or PHONE:
(707)538-2193
Tina M. Hendrix
CureNIDS2000@aol.com
Vice-President, California NIDS Coalition
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.
******************************
10
Year Old Autistic Child Arrested
Broadcast on a TV news program, WEAR TV3 in Pensacola, Florida.
A 10-year-old fort walton beach boy faces two felony charges
after an
outburst at his elementary school earlier this month.
But his mother says the circumstances surrounding
the fourth grader's
arrest make the filing of criminal charges a disturbing decision.
Okaloosa reporter Michele Nicholson is in our
Fort Walton Beach
newsroom tonight with details on this case.
Michele, what about these special circumstances
the mother's referring
to?
Angel Fitzwilliams says her son, Dustin, has the
neurological disorder
called autism that calls for understanding and tolerance, not handcuffs and
courtrooms.
Angel Fitzwilliams won't dispute her autistic son
Dustin sometimes has
emotional outbursts.
But she doesn't think he deserves to be
handcuffed and arrested when
those outbursts turn aggressive, as can happen when autistic children feel
frustrated or overwhelmed.
Angel Fitzwilliams, Dustin's mom: "he's not
aggressive just out of the
blue. I mean, that's just not like him. If he gets frustrated, usually you
can see it coming on."
According to a sheriff's office report, it came
on December 3rd, at
Elliot Point Elementary school.
A school resource officer was called here the
same day the ten year
old's accused of punching a teachers aide.
This time, Dustin was reportedly being combative.
The officer says dustin kicked her and tried to
grab her gun.
He was ultimately placed in handcuffs, charged
with battery on a
school official, and battery on a law enforcement officer.
Rick Hord, Okaloosa Sheriff's Office:
"there's no question but that we
had all the elements of a felony crime present. There's no question but that
the arrest at the time was a valid one under the circumstances. What happens
with the case in court is a different matter.
Fitzwilliams however is working to get the case
dismissed before it
goes to court.
She says an arrest is not the way to handle an
autistic child with the
social skills of a five year old.
Fitzwilliams: "he's ten years old. He can't
ride a bicycle. He can't
tie his shoes. You know? I mean he's got a lot of disabilities and they know
he can not function like a normal ten year old child."
School Superintendent Don Gaetz says it is a
matter between the
parents, law enforcement, and the courts.
Dustin's plea day is scheduled for January 23rd.
Is Dustin still in school? He was suspended...
But he is now back in
class. It's a special class for children with communication, social, and
behavioral problems.
Http://www.weartv.com/news/stories/december/1220/autistic.htm
******************************
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