AUTISM SUPPORT NETWORK/AUTISM SOCIETY
(YORK REGION CHAPTER)
PARENTS (AND GRANDPARENTS) 2002!
3; ISSUE 3
JANUARY 15, 2002
Who is qualified to be a
‘pioneer’? One who ventures into unknown or unclaimed territory to
settle; maybe someone who opens up new areas of thought, research, or
development. You don’t have to be
a researcher or a scientist or even live in a log cabin to be a pioneer.
You just need to have an original thought and act on it.
Fill in a gap.
That’s what the following people
are: true pioneers in the field of ASD support.
Some of their names may be familiar to you, some may be new. You may have read some of their books or visited their
websites, listened to their songs or used their therapy methods.
I find their stories inspiring and empowering and I think you will too.
Please take the time to check out their contributions to our community.
They are helping to make life a little easier for all the rest of us!
I want to thank these
wonderful guest-contributors for taking the time to write these original pieces
for our E-News.
THE E-NEWS INTERACTIVE READER POLLS
Our newest addition to the E-News
is our polling feature. Every
issue, we will try to present an interesting poll of which we will offer the
results of in the following issue. Some
of our polls will be just for fun. We
will send results of the others (like the one below) to Dr. Jeanette Holden
, who is doing this kind of research in the field.
first poll is concerning the incidence of ADHD and ADD in a family with an
individual with autism spectrum disorder. Polls
are voluntary and totally anonymous. Thanks in advance for your participation!
Please cut and paste this
address into your browser or click on: http://www.bbbautism.com/poll_1.htm
Unraveling the Mysteries of Autism and PDD – Meet Karyn
An original article by Karyn Seroussi
had reasons to doubt my doctors until my son was born.
But they had no answers to the questions that he provoked: Why does he
spit up so much? Why does he sleep so poorly? Why did he react badly to his
shots? Why does he get so many ear infections? What is causing his chronic GI
asked why he was losing the language and social skills he had once mastered,
they did have an answer for me: autism.
Yet, when I asked about treatment, once again they were at a loss.
I knew there were a lot of autistic kids who shared my son’s unusual
medical history, and I was determined to find out why this was so, since autism
was supposed to be a “hard-wired, genetic, neurological disorder” that had
nothing to do with his physical symptoms.
husband and I stumbled on the fact that removing dairy from his diet resulted in
a noticeable reduction in autistic behaviors, I was determined to find some
answers. When the results of our
research helped so many other kids in addition to our son, I knew I had to write
results of my article in Parents Magazine (February 2000) and of my book have
been extremely gratifying. The
letters I have received from other parents often bring tears to my eyes.
I am by no means the first parent to discover this connection, and in
order to write my book I “stood on the shoulders of giants” like Bernard
Rimland, Paul Shattock, Kalle Reichelt, Andrew Wakefield and Lisa Lewis, but I
am unspeakably glad that I had the opportunity to share what I learned, and to
motivate other parents to find answers for their own children.
Seroussi, author of Unraveling the
Mystery of Autism and PDD (coming out in paperback in January 2002)
is also co-editor of the ANDI News, a
quarterly newsletter, and for more information on dietary information, visit her
website at http://www.autismndi.com/
Unraveling the Mystery of Autism and PDD by Karyn
Biological Treatments for Autism & PDD: What's Going
On? What Can You Do About It? By
William Shaw; Sunflower Pubns; ISBN:
Research and Resources: How, Why and What to Try. By Karyn
Yahoo Groups: Seroussi Info http://groups.yahoo.com/group/Seroussi-Info/
We Cured Our Son’s Autism by Karyn Seroussi http://www.autisminfo.com/seroussi.htm
Autism Research Institute http://www.autism.com/ari/
Dietary Interventions for the
Treatment of Autism and Related Syndromes by Paul
Shattock and Paul Whiteley http://trainland.tripod.com/paul.htm
Collected Net Articles of
Dr. Kalle Reichelt http://www.hypsos.ch/articles/reichelt.htm
Andrew Wakefield ~ Interview with Spectrum Magazine http://www.autism-spectrum.com/vaccine.htm
Special Diets for Special Kids by Lisa Lewis; Future Horizons; ISBN: 1885477449
Meet Gary J. Heffner, Grandfather Extraordinaire!
An original article by Gary J. Heffner
Thank you for considering me for
the honor. However, I am not a parent of a child with autism. My granddaughter
had symptoms of autism around 15 to 18 months of age (she was never diagnosed
though). I knew what autism was but had not thought much about treatment.
Kayla's departure from us caused me to check the Internet for treatment ideas. I
stumbled upon Bernard Rimland's and Stephen Edelson's information on Vitamin B-6
with magnesium and Lovaas's applied behavior analysis procedures (from many
sources). We found a child's liquid vitamin with a sufficient amount of B-6 and
magnesium and gave Kayla double doses along with aggressively teaching her how
to respond to us. The results were amazing.
Kayla lost most symptoms of autism
and quickly learned the skills she was lacking. By age 2 and a half, she was
indistinguishable from her peers and now, at age four, she is a social
butterfly! One very important thing we did for Kayla is that we prayed every day
and we credit God with healing her and giving us wisdom.
What I learned from my experience
is that parents need information on autism in a readily available place. The
Autism Home Page http://www.autism.mybravenet.com/
began as a list of my favorite web sites and quickly grew into a problem-solving
I have gone on to receive training
from the Judevine Center for Autism in St. Louis, MO and now work as an autism
trainer in Augusta, Georgia. We serve around 20 to 30 families a year. We teach
them about autism, behavior principles, treatment choices, and then we train
their children using positive behavior principles. The parents watch us, then we
coach them to do the same thing, and then we evaluate their performance in the
independent sessions. It's a great method.
I forgot one very important thing
we did for Kayla: we prayed every day and we credit God with healing her and
giving us wisdom. Thanks.
See Gary’s fabulous website here: http://www.autism.mybravenet.com/
the Big Stuff, Dennis Debbaudt Works to Educate Law Enforcement
An original article by Dennis Debbaudt
After a couple of scary incidents
back in the 1980's involving my young son, Kelly, I began a search for
information that I now know will last a lifetime.
One incident was when my son
disappeared while we were visiting my brother's house. He was found after a
frantic fifteen minute search only after my brother's neighbor stepped out of
her house and with a grin on her face called out to us, "Is this yours?”
as she displayed my young son proudly in her arms.
It turned out that when we arrived and were greeting my brother's family
on their front porch, our little guy walked through their house, went out the
back door, down three yards and into the back door of the neighbor's house.
The neighbor found the complete young stranger in her family room playing
contentedly with her own kids' toys.
Another incident occurred on a
shopping trip when I was stopped by mall police on suspicion of child abduction.
This was the first thought that other shoppers had when they saw me inside a toy
store struggling with my tantruming child.
These incidents came at about the
same time savvy; Detroit autism teacher's consultant gave my wife, Gay, and me
some sage advice. "Don't worry about anything he's doing now that won't
matter when he's an adult. Only worry about what he's doing now that will get
him in trouble when he's an adult", she told us.
Great advice, we thought.
Don't sweat the small stuff.
But the two incidents had rung a
bell for me. What would the police have done if they arrived to find Kelly
alone, tantruming in a store, as an adult? What would happen if, as an adult, he wandered into an
unsuspecting neighbor's home? Would the neighbors grin and bear the intrusion
from a strange man? Probably not.
It would be more likely for the police to respond.
Now we were
sweating the big stuff.
'No problem', I thought at the
time. I'll just call the autism society, get their handouts for the police, go
to the police department and get them educated.
The problem? At that time
there was no information about autism geared to the police. No one had written
about it. There was no brochure. No video. No training program. No book.
When I think back I realize that
my reaction is very much like others in the autism community and community
at-large. You work through obstacles by coming together with others who have a
common goal in mind. We contribute our talents to the work that needs to be
done. We find ways to help that are within our unique experiences. By that time,
I had experience in private sector law enforcement, had written for my hometown
newspaper, worked with current affairs TV programs in the UK, and Canada. If
reporting on the interactions between law enforcers and kids and adults with
autism was something that had not yet been done, then this was something within
my life's experiences that I could do.
Thus began a lifelong research
project. The ultimate report. The always-unfinished project. When you have a
child with autism, or any child for that matter, you want only what's best for
them. Rightly or wrongly, you dream their dreams. See their future. And want to
make sure it's the best that they can have.
I learned long ago that the
advocacy groups that serve us are us. We can make them whatever we want them to
be. Through these groups, I met other parents who had watched their own children
grow into adulthood. These were the parents that got together years ago to form
the original advocacy groups. They spurred legislative action to make the
changes to our national laws that now guarantee our kids' rights in education,
housing, employment. These were the pioneers of the autism advocacy community.
They set the pace for us. These pioneers were the parents who gave our family
advice, encouragement, information and support as we struggled to become
educated about our son's needs and develop our abilities to address them.
So, with the examples of the
pioneers in mind, it became an easy decision to make to become involved in
awareness and educational campaigns for our law enforcement, emergency service
and criminal justice professionals. If we all do what we can within our
experiences, we can really improve the lives of our kids and everyone in our
local communities, even long after we are gone and forgotten.
Unfortunate Situations by Dennis Debbaudt http://policeandautism.cjb.net/
Autism, Advocates and Law
Enforcement Professionals: Recognizing and Reducing Risk Situations for People
With Autism Spectrum Disorders by Dennis Debbaudt http://www.jkp.com/catalogue/book.php?isbn=1-85302-980-7
Children, Challenged Parents…A Caring Father, Meet Dr. Robert Naseef, Ph.D.
An original article by Dr. Robert Naseef
my son, Tariq, was born over 22 years ago, I was totally swept away by the
electricity of that moment. My
heart pounded with excitement as I held his soft body next to my heart.
He was all I had dreamed he would be in that moment.
Life flowed through the first eighteen months of his life, and then the
autism bomb hit. He stopped
talking, stopped playing normally, and began flapping his arms.
Eventually my boy was diagnosed with autism. He never spoke again; he doesn't read or write; he is
extremely active and he doesn't understand danger.
His life and mine have never been the same.
more ways than I could ever have imagined, he has changed me.
I have no idea who I would be if he had developed typically.
At the time, my son was born I was a teacher of English and reading. A tremendous sorrow came over me despite my love for my son,
and it lingered for years. On
Tariq's eighth birthday, I was still buying baby toys with tears in my eyes and
hoping my child would enjoy them. I
found that often the grief can be for ourselves--our lives, as parents did not
turn out how we expected. Our child
may be happy and content while we still struggle to let go of the dreams we
had--and make new ones as we learn to accept and enjoy the child we actually
have. Indeed, I have learned that
it is the struggle of all parents.
worked hard to find answers to the questions that haunted me about autism.
I was forced to accept it, and I learned with help from others to survive
emotionally. I became a
professional psychologist in the process. Tariq
was a great inspiration to me. I
yearned and learned to heal my broken heart.
It continues to help me to contribute to the struggles of parents who are
challenged by their child's disabilities.
emotional landscape for parents can be a treacherous one.
In my professional life I have become a guide for families who are
experiencing the impact of autism and other disabilities upon their lives.
Much of my story and my work is recorded in my book, Special Children,
Tariq, as for so many other children and adults with autism, there has been no
miracle cure, despite all my striving and wishes to the contrary.
I am at peace with that now. Still
there are times that I wish we could sit down and really talk-and moments when I
wonder what might have been. Nonetheless,
through acceptance and courage and endurance, the road through hardship has
brought peace and love. I am
thankful to my son for lighting the way.
Families Guide http://specialfamilies.com/
Children, Challenged Parents by Robert Naseef
Birch Lane Pr; ISBN: 1559723777
Families Bookstore http://specialfamilies.com/id103.htm
Our son, Sam, was born the day
after Christmas in 1996. He screamed his head off the whole time in the
hospital and three months continuous when we go home from the hospital.
Our doctor told us we needed to keep an eye on him, and she looked concerned.
However, we moved and changed doctors.
For two years we spent going to
the pediatrician constantly. Sam was always sick. Infection after
infection, allergy after allergy, surgery after surgery. He had tubes put
in his ears twice and his tonsils and adenoids removed. A bad idea for it
took him a long time to recover. What a mistake, but we learned a lesson
and he is doing better now.
We finally took him back to the
doctor who delivered him. She told me he was deaf, and Easter Seals
came to our house. Easter Seals provided services till he was 3 still
under the belief he was deaf. At 3 years, the Sharyland School
district special ed director, Debra Guerra, came to our house. Sam
was fixed on pulling a ceiling fan string the whole time she was here.
I asked her what was wrong with my son, and she hesitated to tell me.
Finally, I just came out and said, "I need to know what's wrong with my
son. Please tell me what you think!" That's when she told me my son
was autistic. We took him to a neurologist, Wilson Sy, and on November
19th, 1999 he was finally diagnosed with autism.
In between all the illnesses,
strange behavior and constant crying, I would sing songs to him to get him to
settle down, but mostly to keep my sanity. The first song I made up was,
"Please Don't Cry." Then came "Sammy James."
With so much time devoted to Sam,
his sister Jackie, now 15, was spending a lot of time in her room. In
order to try to get her out, I suggested singing lessons. She agreed if I
went with her. To make a long story short, I started singing the songs
about Sam to Patti, our singing teacher. She played the songs on the piano
and encouraged me to record them.
So every Wednesday night, cause it
was the only night my mother-in-law would take care of Sam, I
recorded. It took over two years, but it's finally done.
I'm not sure what will happen with
the CD, but I sure feel renewed getting this story off my chest. I hope it
will help other parents, especially the song, "Baby Angel." "Baby
Angel" is a song I wrote while watching my son climb the tree in the back
yard. He looked like an angel without wings. When I told that
story to Patti, she told me a religious story about special children really
being angels from heaven. I went home that night and put the comparison to
my child to words. Out came the song, "Baby Angel."
Amy’s Website: http://www.amyames.com/
Let Me Hear
Your Voice: A Family's Triumph over Autism
(New York: Fawcett Columbia, 1993). Also Knopf. Mother's account of using
the Lovaas's Behavior Modification method with her children. Also has comments
on Holding Therapy. Includes a good description of the grieving process parents
go through. This book is recommended over and over to parents with a new
diagnosis for their child. ISBN: 0449906647 (paperback, 371 pages, 1994).
Catherine Maurice, editor,
Gina Greene, editor & Stephen Luce, editor.
Intervention for Young Children with Autism: A manual for parents and
(Austin: Pro-Ed, 1996). 24 contributors. Primary compiler is Catherine
Maurice, who wrote the very popular account, Let Me Hear Your Voice.
ISBN: 0890796831 (paperback, 400 pages).
PLEASE JOIN US FOR A CHAT ON
CHELATION. DATE AND TIME TO BE
Convert to your time zone here. http://www.timezoneconverter.com/cgi-bin/tzc.tzc
TRANSCRIPTS FROM APRAXIA, CHALLENGING BEHAVIORS, EVERYDAY SENSORY STRATEGIES AND
AUTISM, DEANNA PIETRAMALA (CHAT #1) AND ENZYMES CHATS AVAILABLE UPON REQUEST email@example.com
"Autism and Essential Fatty Acids", "Central Auditory Processing
Disorders", "Siblings of Children with ASD", "ADHD/ADD and
ASD", "Autism and Nutrition", "Acceptance and Denial".
chats take place Mondays at 1pm and 9 pm. Please join our hosts Lynn, Tina and
myself. Specialty guest-hosted
chats will be announced.
~ Parent Empowerment Workshops
– Spring 2002 Lineup
Presented by Autism Society Ontario ~ York Region Chapter and BBB Autism Support
Voice Mail 905-780-1590 or
Location: 11181 Yonge Street,
Richmond Hill (unless otherwise specified)
LOYAL TRUE BLUE AND ORANGE
BUILDING - YONGE ST. NORTH OF ELGIN MILLS
SUGGESTED DONATIONS COLLECTED
AT THE DOOR, RECEIPTS AVAILABLE
WORKSHOPS ARE SUBSIDIZED BY
YORK REGION CHAPTER MEMBER’S VOLUNTEER FUNDRAISING ACTIVITIES.
MEMBERSHIPS AVAILABLE AT THE
DOOR. ANNUAL DUES $30.00. GET THE MEMBER’S RATE THAT NIGHT!
DATES AND SPEAKERS ARE
CONFIRMED, HOWEVER VENUE MAY CHANGE TO ACCOMMODATE INCREASED
CHAPTER MEMBER FAMILIES: ANY
NUMBER OF FAMILY MEMBERS FOR ONE PRICE!
COST INCLUDES HANDOUT
PACKAGES AND REFRESHMENTS. NUMBERS FOR ANY PARTICULARLY HIGH INTEREST WORKSHOP.
YOU WILL BE NOTIFIED OF ANY CHANGES
& Assessments Presented by Dr. Adrienne Perry, Psychologist, Thistletown
2nd Floor Boardroom. Refreshments & Registration 7:00
Presentation 7:30 sharp
What is a good, comprehensive assessment? What tests
are administered and why? Why parents are pivotal. Evaluating therapies. What to
do with your assessment. What’s in a label? Reasons for regular reassessment.
What is the role of a psychologist/psychometrist? Who can give a diagnosis of
autism spectrum disorder? What are the costs?
Preschooler with Autism Spectrum Disorder Presented
by Margo Allen-Early Intervention Services, Darleen Spence-Behaviour Management
Services, Liz C-parent and founder BBB Autism
Tuesday, February 5th,
You either have a diagnosis (or strongly suspect one) of
Autism Spectrum Disorder for your child. Now what do you do? Until now, parents
have fumbled in the dark because they have been given no clear steps to follow.
That has all changed with ‘A Beginner’s Guide to Autism Spectrum Disorder -
Preschool Edition’. Clear and
concise, these are probably the best, basic information sources that you need as
you begin your journey. There are many, many more resources out there, but in
the interest of not overloading you at this time, we are presenting what are (in
our opinion) the most useful for a "Beginner". Suggested Donation at
the door: Member families $ 5.00, Non-members $ 15.00 each.
‘Beginner’s Guide’ $ 5.00 per copy.
& Estates for Families with Children with a
Disability Presented by Robyn Solnik, lawyer
February 19th 2nd Floor Boardroom. Refreshments & Registration
6:30 Presentation 7:00 sharp
care of a child with a disability can be an enormous, emotional responsibility,
especially if there are concerns about your child’s long-term financial
security. With proper expertise and
guidance, you can put your mind at ease and ensure your child has a secure
financial future. When it comes to leaving money to children with disabilities,
parents face a major roadblock: many financial advisors and lawyers don’t know
what the best options are, which can make it difficult to get good advice. Many
families have very ordinary incomes. For
some advisors, the market may not seem lucrative enough to merit the work
involved in becoming familiar with all options, which can seem quite complex at
first. Most parents are unaware of
what they might gain by seeking out specialized help – or what they stand to
lose if they don’t.
Therapy Presented by Nancy Wood
March 5th, Room
B 13 Refreshments & Registration 7:00 Presentation 7:30 sharp.
Suggested Donation at the door: Member families $ 5.00, Non-members $
& Sexuality Presented by Deanna Pietramala,
Consultant, Leaps & Bounds (Bartimaeus)
April 9th, Room B13,
Refreshments & Registration 7:00 Presentation 7:30 sharp
Presented by Deanna
Pietramala, Consultant, Leaps & Bounds (Bartimaeus)
April 23rd, Room B13,
Refreshments & Registration 7:00 Presentation 7:30 sharp
Discipline & the Exceptional Student
Moir, Educational Consultant
May 7, Room B13, Refreshments & Registration 7:00 Presentation 7:30 sharp
Pietramala, Consultant, Leaps & Bounds (Bartimaeus)
June 4th, 2nd
Floor Boardroom, Refreshments & Registration 7:00 Presentation 7:30 sharp
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Volume 1; Issue 1 WELCOME ISSUE!
Volume 1; Issue 2 SUMMER CRISIS
Volume 1; Issue 3 SPOUSAL CONCERNS
Volume 1; Issue 4 SENSORY INTEGRATION
Volume 1; Issue 5 CHALLENGING BEHAVIORS
Volume 1; Issue 6 BACK TO SCHOOL
Volume 2; Issue 1 IEP
Volume 2; Issue 2 KEEPING YOUR COOL - WHEN YOUR EMOTIONS ARE ON FIRE
Volume 2; Issue 3 DEALING WITH STRESS
Volume 2; Issue 4 GIFTS FOR THE CHILD WITH ASD
Volume 2; Issue 5 ONE CHILD’S STORY – A TALE OF LOVE AND INTERVENTIONS
Volume 3; Issue 1 SURVIVING THE HOLIDAYS
Volume 3; Issue 2 HOW TO ENJOY DISNEY WORLD
Permission to reproduce and hand out is granted, provided the
document is displayed in its entirety. Other permissions may be requested
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BBB PARENT GUIDES
CONTAINS PRACTICAL INFORMATION
BY PARENTS FOR PARENTS Available on request, e-mail firstname.lastname@example.org and ask for: (now available in PDF format)
Epsom Salts (long version)
Epsom Salts (condensed)
Pros and Cons of telling your ASD child his/her diagnosis
How we advocate for our children
Guide to holidays and large family gatherings
notice to our readers...
founders of this newsletter and the BBB Autism support club are not physicians.
editor reserves the right to make decisions as to whether contributions are
appropriate with respect to content, length, etc. We will not publish offensive material using foul language,
or contributions that are inflammatory or disrespectful to decisions by other
parents (i.e. therapies). We do not generally accept contributions if they are
ads for private service agencies/clinics. We are also unable to accept
contributions after an issue has been completed. We reserve the right to edit
content, but will inform you in advance if we are going to do this. J
(c) BBB Autism - 2001
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