BBB AUTISM SUPPORT NETWORK

BBB AUTISM SUPPORT NETWORK/AUTISM SOCIETY ONTARIO
(YORK REGION CHAPTER)
PRESENT
THE E-NEWS
http://www.bbbautism.com/about_bbb.htm

Modern 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.

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:holdenj@post.queensu.ca) , 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!

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 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/

Related Links

v Unraveling the Mystery of Autism and PDD by Karyn Seroussi http://www.simonandschuster.com/book/default_book.cfm?isbn=0684831643

v Research and Resources: How, Why and What to Try. By Karyn Seroussi http://www.up-to-date.com/dan/powerpoint/seroussi_files/frame.htm

v We Cured Our Son’s Autism by Karyn Seroussi http://www.autisminfo.com/seroussi.htm

v Dietary Interventions for the Treatment of Autism and Related Syndromes by Paul Shattock and Paul Whiteley http://trainland.tripod.com/paul.htm

v Collected Net Articles of Dr. Kalle Reichelt http://www.hypsos.ch/articles/reichelt.htm

v Andrew Wakefield ~ Interview with Spectrum Magazine http://www.autism-spectrum.com/vaccine.htm

v 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 clearinghouse.

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.

Sweating 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.

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.

'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 forgotten.

v Avoiding Unfortunate Situations by Dennis Debbaudt http://policeandautism.cjb.net/

v 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

Special Children, Challenged Parents…A Caring Father, Meet Dr. Robert Naseef, Ph.D.
An 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.

v Special Children, Challenged Parents by Robert Naseef Birch Lane Pr; ISBN: 1559723777

Something to sing about! Meet Amy Ames
An original article by Amy Ames

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."

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).

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).

PLEASE JOIN US FOR A CHAT ON CHELATION. DATE AND TIME TO BE ANNOUNCED!
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PLEASE NOTE: TRANSCRIPTS FROM APRAXIA, CHALLENGING BEHAVIORS, EVERYDAY SENSORY STRATEGIES AND AUTISM, DEANNA PIETRAMALA (CHAT #1) AND ENZYMES CHATS AVAILABLE UPON REQUEST liz@deaknet.com

coming soon: "Autism and Essential Fatty Acids", "Central Auditory Processing Disorders", "Siblings of Children with ASD", "ADHD/ADD and ASD", "Autism and Nutrition", "Acceptance and Denial".

Regular chats take place Mondays at 1pm and 9 pm. Please join our hosts Lynn, Tina and myself. Specialty guest-hosted chats will be announced.

INSTRUCTIONS ON ACCESSING ABOUT.COM CHAT

Hi! Adele Vance Tilton of About.Com’s autism/pdd community has generously invited us to borrow their wonderful chat room to use for our chats. The following is a detailed description of how to access this room.

1. Copy/Paste this URL into your browser: http://autism.about.com/index.htm?rnk=c1&terms=autism

2. On the grey bar (under Adele’s picture) click on "CHAT".

3. Click on "Log on to Chat".

4. On this page: (a) Under "nickname", delete "guest" and type in a name for yourself. (b) Choose your preferred "font size".

5. Click on "Connect" and after a very short time, your chat screen will come up.

6. Move your screen by clicking the icon at the top left hand side of the window. Then drag the window to centre of your screen.

For chat questions, please email liz@deaknet.com

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Diagnostics & Assessments Presented by Dr. Adrienne Perry, Psychologist, Thistletown Regional Centre

Tuesday, January 22^nd 2^nd 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?

Your Preschooler with Autism Spectrum Disorder Presented by Margo Allen-Early Intervention Services, Darleen Spence-Behaviour Management Services, Liz C-parent and founder BBB Autism

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.

Wills & Estates for Families with Children with a Disability Presented by Robyn Solnik, lawyer

Tuesday, February 19^th 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.

Tuesday, March 5^th, Room B 13 Refreshments & Registration 7:00 Presentation 7:30 sharp. Suggested Donation at the door: Member families $ 5.00, Non-members $ 15.00 each.

Autism & Sexuality Presented by Deanna Pietramala, Consultant, Leaps & Bounds (Bartimaeus)

Tuesday, April 9^th, Room B13, Refreshments & Registration 7:00 Presentation 7:30 sharp

Social Skills Presented by Deanna Pietramala, Consultant, Leaps & Bounds (Bartimaeus)

Tuesday, April 23^rd, Room B13, Refreshments & Registration 7:00 Presentation 7:30 sharp

Tuesday, May 7, Room B13, Refreshments & Registration 7:00 Presentation 7:30 sharp

Tuesday, June 4^th, 2^nd Floor Boardroom, Refreshments & Registration 7:00 Presentation 7:30 sharp

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To request, email liz@deaknet.com and indicate which volume/issue(s) you prefer. You can order in HTML, MSWORD or PDF. Newsletter Archives are also available on our website at http://www.bbbautism.com/news_arch.htm .

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 by e-mail: liz@deaknet.com

CONTAINS PRACTICAL INFORMATION BY PARENTS FOR PARENTS Available on request, e-mail liz@deaknet.com and ask for: (now available in PDF format)

The founders of this newsletter and the BBB Autism support club are not physicians.

This newsletter references books and other web sites that may be of interest to the reader. The editor makes no presentation or warranty with respect to the accuracy or completeness of the information contained on any of these web sites or in the books, and specifically disclaims any liability for any information contained on, or omissions from, these books or web sites. Reference to these web sites or books herein shall not be construed to be an endorsement of these web sites or books or of the information contained thereon, by the editor.

The 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

Permission to reproduce and hand out is granted, provided the document is displayed in its entirety. Other permissions may be requested by email: liz@deaknet.com. The purpose of this copyright is to protect your right to make free copies of this paper for your friends and colleagues, to prevent publishers from using it for commercial advantage, and to prevent ill-meaning people from altering the meaning of the document by changing or removing a few paragraphs.

Modern Day Pioneers of ASD

Related Links

Something to sing about! Meet Amy Ames An original article by Amy Ames

INSTRUCTIONS ON ACCESSING ABOUT.COM CHAT

Something to sing about! Meet Amy Ames
An original article by Amy Ames