SOCIETY ONTARIO (YORK REGION CHAPTER)
(AND GRANDPARENTS) 2002!
VOLUME 3; ISSUE 3
Day Pioneers of ASD
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.
ANNOUNCING 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 (e-mail, mailto:firstname.lastname@example.org who is doing
this kind of research in the field.
Our 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! J
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 Seroussi
An original article by Karyn Seroussi
I never 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 problems?
When I 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.
When my 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 about it.
The 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.
Karyn Seroussi, author of Unraveling the Mystery of Autism and PDD (coming out
in paperback in January 2002)
Karyn 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 Seroussi
Treatments for Autism & PDD: What's Going On? What Can You Do About
It? By William
Shaw; Sunflower Pubns; ISBN: 0966123808
Research and Resources: How, Why and
What to Try. By Karyn Seroussi
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
Shattock and Paul Whiteley http://trainland.tripod.com/paul.htm
Collected Net Articles of Dr. Kalle
Andrew Wakefield ~ Interview with Spectrum Magazine http://www.autism-spectrum.com/vaccine.htmSpecial
Diets for Special Kids by Lisa Lewis;
Horizons; ISBN: 1885477449
Meet Gary J. Heffner, Grandfather Extraordinaire!
original article by Gary J. Heffner
See Gary’s fabulous website here: http://www.autism.mybravenet.com/
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
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.
the Big Stuff, Dennis Debbaudt Works to Educate Law Enforcement
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. Nothing.
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
Avoiding Unfortunate Situations by Dennis Debbaudt http://policeandautism.cjb.net/
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,
original article by Dr. Robert Naseef
When 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.
In 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.
I 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.
The 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, Challenged Parents.
For 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
Naseef Birch Lane Pr; ISBN: 1559723777
Families Bookstore http://specialfamilies.com/id103.htm
to sing about! Meet Amy Ames
original article by Amy Ames
Amy’s Website: http://www.amyames.com/
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
Other Parent Pioneers
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).
Maurice, editor, Gina Greene, editor & Stephen Luce, editor.
Behavioral Intervention for Young Children with Autism: A manual for parents and professionals
(Austin: Pro-Ed, 1996). 24 contributors. Primary compiler is Catherine Maurice, who wrote the very popular account, Let Me Hear Your Voice. http://www.proedinc.com/store/7816.html ISBN: 0890796831 (paperback, 400 pages).
Lisa S. Lewis, Ph.D.
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AVAILABLE: "BEGINNER'S GUIDE TO ASD IN PRESCHOOLERS IN YORK
REGION" - A step-by-step approach. You've got a diagnosis, NOW
what do you do? Also includes resources, links, recommended reading
and guidelines for funding forms.
BEGINNER'S GUIDE TO ASD"
Includes a dictionary, short guide to communication, sensory integrations,
autism and diet, ABA/IBI and a list of other therapies, recommended
reading, links and more. Designed as a companion to the York Region Guide,
it is also a stand-alone and can be used for any area.
free of charge! Email us at email@example.com
~ Parent Empowerment Workshops ~
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Proudly Presented by Autism Society Ontario ~ York Region
Chapter and BBB Autism Support Network
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Adrienne Perry, Psychologist, Thistletown Regional Centre
January 22nd 2nd Floor Boardroom. Refreshments
& Registration 7:00 Presentation 7:30 sharp
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?
Your Preschooler with Autism Spectrum Disorder
BBB Autism & York Region’s
‘A Beginner’s Guide to Autism Spectrum Disorder - Preschool Edition’!
Allen-Early Intervention Services, Darleen Spence-Behaviour Management Services,
Tuesday, February 5th,
Room B13. 6:30 p.m. to 10:00 p.m. Refreshments
& Registration from 6:00 p.m.
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".
Wills & Estates for Families with Children with a
Tuesday, February 19th
2nd Floor Boardroom.
Refreshments & Registration 6:30 Presentation 7:00 sharp
Taking 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.
Kavanagh, Consultant, Leaps & Bounds (Bartemeaus)
Tuesday, March 5th, Room B 13 Refreshments & Registration 7:00 Presentation 7:30 sharp
of Children with Autism
Predo, Social Worker, Thistletown Regional Centre (TRE-ADD)
Tuesday, March 26th, 2nd Floor Boardroom, Refreshments & Registration 7:00 Presentation 7:30 sharp
What do you tell your ‘special’ child’s siblings,
remembering they will have special needs too? What are the warning signs? Who
can they see? How can they help their sibling? How do you balance your time with
all your children? How do they deal with public reactions? How do they express
their feelings living with a sibling with special needs?
Consultant, Leaps & Bounds (Bartimaeus)
Tuesday, April 9th, Room B13, Refreshments & Registration 7:00 Presentation 7:30 sharp
Consultant, Leaps & Bounds (Bartimaeus)
Tuesday, April 23rd, Room B13, Refreshments & Registration 7:00 Presentation 7:30 sharp
Discipline & the Exceptional Student
Moir, Educational Consultant
Tuesday, May 7, Room B13, Refreshments & Registration 7:00 Presentation 7:30 sharp
Consultant, Leaps & Bounds (Bartimaeus)
Tuesday, June 4th, 2nd Floor Boardroom, Refreshments & Registration 7:00 Presentation 7:30 sharp
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Volume 1; Issue 1 WELCOME ISSUE!
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INFORMATION BY PARENTS FOR PARENTS Available on request, e-mail email@example.com 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
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(c) BBB Autism - 2002
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