Volume 7; Issue 1 September 4, 2002
In the seventies, the musical group Bread
“Oh what a change, what a change that would be
I can feel it comin' over me.
Maybe it's strange, strange to say
but I can't remember how -
how it used to be.” (What a Change, by David Gates) *
As we journey through life, we are confronted with many changes – probably the most significant for our subscribers is learning that someone they love has autism/PDD and then living with it thereafter. We not only have to change our lifestyles totally (Corel Livingware replacing Royal Doulton china for example) but our attitudes about ourselves. It goes without saying that our feelings about the individual we love may change as well. Not that we stop loving them, but we may go through so many feelings – the largest portion of them positive, as evidenced by our last issue on the “Cure”.
We begin to examine how we view the world. People might never have seen before, suddenly appear and we begin to see injustices every day that anger and sadden us. We also learn about ourselves and our capacity for love, intelligence, understanding and wisdom.
Change is inevitable and, by its very nature, has a way of letting us ‘forget’ the ‘good old days’. Funny thing, though – if we really thought about it, I think we may discover that despite the occasional challenge, these are the good old days!
Below are some very heartfelt thoughts on this subject from our wonderful readers (a couple of whom are first-time contributors). We thank them for this glimpse into their souls and hearts.
· Lyrics are Copyright. BBB Autism Support Network in no way claims ownership of these lyrics displayed herein
trouble...double the fun...double the love
How has having a child
with ASD changed my life?
By Lee Anne
Some of the ways having an Autistic Child has Changed my Life
Every incident, which passes through our lives, has within it the potential to change both our destiny and the essence of our inner beings. Most of these moments fall like tiny raindrops into the continual flow of our lives. Scarcely are they noticed as we absorb them with little conscious awareness. However, once in awhile there comes an incident so powerful not only do we feel the full intensity of its impact but also as a tidal wave it smashes into us tearing apart our lives and dismantling who and what we thought we were. For me having to label a daughter with Autism was one such incident.
I have found that such a life altering force can be both profound and devastating in its impact. Personal weaknesses are exposed; family and marital relationships tested values and belief systems altered and cherished dreams torn to shreds. Life after the impact is often vastly altered. Looking at the world through different eyes I see possibilities that previously I never knew existed. The fact that positive transformations and growth can come out of incidents that were thought primarily negative is one of life’s ironic mysteries.
To illustrate what I mean more clearly I will introduce you to my father’s cousins. They lost their daughter at eighteen to a man who first raped then murdered her. Although devastated by their daughter’s death they eventually experienced a positive drive to find meaning and purpose in their lives. This is why they began to take in and care for numerous crack and Aids babies. This act arising out of their pain is wonderfully positive yet never changes the negativity of their daughter’s death.
I try to take this principle and apply it to negative events in my own life searching out what positive can come from any situation including my daughter’s Autism. This I believe is a gift as it makes it easier to cope with the inevitable negativity in life. This is one of the reasons I tend to look at the changes our youngest daughter has brought to our lives in a positive vein….
A few of the Positive Impacts my Autistic Daughter has had on our lives
1. She introduced me to the workings of the brain causing me to look more thoroughly into this area. Eventually this was benefit to the entire family including those neurologically atypical in the sense of being gifted. She helped me to understand that if a brain operated differently that did not necessarily mean being less capable. She taught me to look beyond what appeared to be true and understand that speech and the ability to communicate do not determine intellect or potential.
She helped me to see that a powerful mind can lie within an Autistic individual although it may not at first be apparent. And she helped me to have faith that finding the unique keys to unlock a child’s potential is where the secret often lies. And that each individual whether or not they carry the same diagnostic label can require very different keys to unlock this potential. But most of all my youngest daughter taught me to preserver in the face of no tangible results and in the wake of the voices of many telling me that my attempts were in vain.
began talking she showed us new and special ways to look at the world. For
example she can help solve a problem without even being aware she is solving
it just because she sees things others cannot see. This is a valuable asset
to the family. This same ability to see/do things differently brings a lot of
laughter to our family and she has the ability to lighten a tense situation by
simply saying what it on her mind. This often makes one feel as if their
seriousness was not anywhere near as serious as they thought it was. A very
valuable asset that she has brought to this family I believe.
3. Where I once valued conventional assumptions concerning the intellect highly and measured myself and others against these assumptions I learned that neurologically typical aspects of intelligence were not the only areas of intelligence of value. A deepening of this understanding came partly from observing our daughter finding some aspects of conventional intelligence easy to master and other skills such as social and language skills so difficult and partly due to her capacity to learn typical material in a completely atypical manner. Since the material learned was learned just as thoroughly if not more so it was easy to see that the normal way for the brain to function is not necessarily a requirement for the brain to operate well. As long as the right keys were found to help stimulate the atypical healthy growth.
As a consequence I learned to appreciate my own atypical mind and not to berate myself for having intellectual weaknesses (it is believed I was brain damaged during my first year). I realized that the ways that I compensate are just as legitimate as conventional ways. My youngest daughter helped me to accept my learning disabilities and my atypical mind and over time embrace this aspect of myself. Not only was I able to forgive those who had labeled me and release over thirty years of anger, bitterness and hostility but this allowed me to explore the more neurologically atypical aspects of myself. This led to changes within myself that helped my system to run more effectively as well as receiving more thorough treatment from professionals.
4. Through Identifying her needs and challenges I was able to identify certain aspects that were the same between my daughter and myself. For instance when I discovered that she needed a language program which emphasized the slowing and breaking up of the sounds in words combined with visual phonetics in order to learn to hear words I started researching Auditory Processing disorders. Consequently I was able to identify that not only did I have an Auditory Processing disorder but so did my other daughter. This led to an investigation of Sensory Processing disorders, which has had an extremely valuable impact on our entire family. This is just one of the many shadow symptoms of Autism that by investigating has had a very positive effect on our family.
As well I stopped condemning myself for having tactile and auditory sensory issues and I learned to stop believing others conclusions that these issues were imaginary or that I was too sensitive. This helped my self-esteem immeasurably. It also helped my second born son. Not only did we come to understand his tactile and auditory sensitivity more thoroughly but it did him a world of good to understand why he felt differently concerning these matters. My son and I have become closer as a consequence of sharing many of these sensory issues. A bond made from mutual understanding. This is a gift given from my daughter’s presence in our lives.
My daughter is very special to me. Raising her as an infant and preschooler I felt a special affinity with this my fourth born child. This was a child so very much like myself. This even though she showed signs of Autism shortly following birth. I enjoyed her, I appreciated her personality and I found her easy to understand and easy to please. I understood her rhythm, her structure and her ways and helped her to feel as comfortable as she could in this world.
I soon learned however that others found her incomprehensible and difficult to understand. The more neurologically typical that individual was the less likely they were to find our daughter to be an easy child. It was as if their worlds were so completely out of sync. This aspect in particular I related to having grown up in a neurologically typical world manifesting numerous neurological differences, most likely acquired from brain injury during my first year.
So it was that I had a good deal of resentment built up against a neurologically typical population who had difficulties accepting anything out of the ordinary even if it was harmless. I swore that under no circumstances would any of my children suffer a similar fate as mine being singled out, labeled and made to feel inferior. However this was not to be as three out of my four children have serious special needs. So it was when I felt the need to have my daughter labeled by the NT population it was a devastating and life altering experience for me.
Through my precious daughter I learned that it is okay to be the person that I am. That I am unique not flawed. She taught me to be more accepting of the challenges that arise for me from being neurologically atypical. Consequently this increased my self-esteem, which helps me to raise all four of my precious children.
What would you Change if you could?
What would I change if I could? Well things happen as they do. The past is… the present is… The future is what we have a chance to effect. Even the future often twists in strange mysterious directions not possible to predict. Attitude is more than circumstances… as long as the mind is healthy… the body not too run down this is where the power of change lies.
So perhaps in the logical manner of things I would change my mind and attitude. I would take my youngest to the doctor sooner. I would have her checked thoroughly for development delay and Autism. I would not be afraid of being judged harshly or quake in fear of being condemned with the word Autism. I would not have been so terrified of learning disabilities and handicaps as I was of my own. Nor would I have so much anger that it was my two daughters like myself stricken with handicaps both in body and in mind.
But it is also true that I if given a wish I would in a magical sense change everything. My family would not carry genetic disorders. I would have never almost died as a baby and I certainly wouldn’t have ADD or Bipolar Disorder or any disorders that hampered me or caused pain. None of my children would be affected… no chromosomal abnormalities, no mood disorders, no seizures, no negative manifestations Autism. And certainly no prejudice closed minds or ignorant people in the world. For being a magical world this would be a perfect world.
But this isn’t the world that we know and can never be. Regrets are irrelevant… what could have been changed in the past is irrelevant. Change lies only in the future… And if I can affect that future I ask primarily for two things… the strength and drive to move forward and believe that with faith and hope all things are possible and the capacity to accept, that which is not destined to change. For the holding on to that which can not be changed, frozen in grief not only causes pain but can make impossible to see where change and positive growth is possible.
Compassion by Naomi
I am a physician. Having a child with autism has made me more compassionate for others dealing with a devastating revelation, whether it’s dealing with paralysis, cancer, death of a loved one or disability. I now know what I’m talking about when I say, I know that this feeling that you wonder how you can even take the next breath will ease over time.
On the other hand, after dealing with inane statements from others, like “well, at least it’s not cancer” (come on, now that one bad thing has happened to my child, all the others seem more likely), I am less likely to say them. I start out saying to patients; our situations are different, but similar in some ways. I CAN say, I know what it’s like to grieve, which is something that had never really struck me before. And I know what it’s like to grieve for something that others don’t always recognize—if there’s not a funeral, people sometimes wonder what your problem is.
I know the importance of having a community of people who deal with what you are dealing with. Nobody understands my fear that “S” will one day start smearing poop. Nobody understands that even if my little boy talks, he may not be able to function adequately in society. In response to my fears that “S” will run away, that he will be sexually molested (much more common in our kids) and not be able to tell me. My disappointment at not going to restaurants and needing special foods at school just to accommodate his diet. Every NT parent that I know says, ‘Well, most everyone has to deal with that. Yeah, but nobody else has the reasons that I do to make it so likely. Now I refer people to net groups, give them info on the societies and groups that offer support for their particular disease or disability. I bring people with similar in to talk to them, so they can see what ‘normal life’ is like now that they have ‘X’ process.
I find that as I develop as a parent of autism; I am more accepting of my child. Yes, I wanted a cure when “S” was first diagnosed, now I want to keep my kid, and deal with the problems that make life so precarious for him.
Enlightenment by Cindy A.
My 8-year-old son’s autism has changed me in so many ways. I considered myself an enlightened person, having lived through the civil rights struggle and found my first spasm of injustice at the murder of Martin Luther King, Jr. I was 8 years old, and I came home from school to find my dad in front of the TV watching Walter Cronkite telling the world that Dr. King was dead, and my dad said, “I knew if that N----- didn’t shut up, somebody would shoot him.” I was stunned and sad beyond description. It was the first time I realized that the civil rights movement was really about hatred that was true and real and palpable, and that it existed all over the country, even in my own dad.
It was a hard truth to incorporate.
When my son was diagnosed with autism at age 3, I had a smug and self-assured idea that I was not prejudiced at all. Oh, sure! I soon found myself talking about annoying people as “retards” and expressing fear and rejection about persons I suspected were mentally ill. I freely used terms like nut job, fruitcake, freak show, idiot, mental case, and sicko. It was not very long before I heard such terms being bandied about in reference to my son. It was heartbreaking, but eye opening.
My son’s autism not only enlightened me to his condition, but to the behavioral patterns of human beings as a whole, and it allowed me to be more tolerant of them and not assign labels to that which I did not understand. It permitted me to accept more people for what they are instead of what they do. It was extremely liberating.
WELCOME TO THE ZOO!
By Michelle E.
How raising a child
with ASD has changed my Life
”B” has completely changed my life. He has taught me so much -- I owe so much to “B” for who I have become as a person.
When Brian was little -- I was such a basket case. He was so difficult and I had an older son and a newborn. My mom passed away and DH had just started graduate school and I was so lost and alone. I never thought I was going to get through an hour with “B” -- 5 minutes seemed like years dealing with him.
It was a rough adjustment for all of us -- but being the MOM - I was the one who took the brunt of his temper and frustration because he wasn't speaking. The biting was the worst -- I had bite marks all over my hands and arms and going anywhere with him and the kids was a nightmare. I was constantly in tears. Somehow I got through those young years. Somebody was holding my hand and leading me to my future. HE still is.
As “B” got older, and I got some help in the house -- things got a bit easier. Still, explaining to everyone why “B” acted the way he did was hard -- the stares, the comments and even the family telling me it was a result of bad parenting made me so depressed -- partially because I believed them. Now I know better.
I started surrounding myself with only families that had children with autism. They understood and had similar issues. Going to the BBB Message Board helped me tremendously with my shyness -- I found out that I could write all my feelings down and people responded (who I now consider my family).
I was always shy -- Painfully shy and unsure of myself. As “B” started to improve, I also started to improve my personality.
I developed a wicked sense of humor, which also helped and started meeting more and more people with children in similar situations. I also realized that it is ok to need a break and to ask for help.
Since we started SPARC I have continued the learning experience -- once again if “B” hadn't been who he is -- I probably would never be who I am today.
3 months ago I took another challenge and spoke to my first audience. This was a big moment for me -- I stood up in front of 17 people and talked about Brian at our first SPARC meeting. (I was the one who never could talk to a group of people – I would get frozen and all stiff and clam up. I was that shy) the second meeting I spoke at was easier. Still nerve wracking, but easier then the first time.
Now I am talking to groups of people and I am still nervous but I am doing it. And I am using the advice I give to “B” -- its ok to be scared and its ok to make mistakes – that’s how you learn -- but if you don't try - you will never know if you will succeed in something. It is easier to give the advice then use it on myself but I am trying.
I am Co-chairing the Breast Wellness Tea for R's (DH) Hospital in front of 400 women. That has me a bit nervous -- but I am doing it. Six months ago I would never have done anything like that.
I just keep it in the back of my head that “B” keeps surprising us -- improving every day and that I need to keep trying to improve every day as a person too. He is my driving Force.
I believe that life is a road that has been pre-planned for me and that I am going down this road -- not knowing what is next -- but knowing that it is full of twists and turns.
Today, “B” is a different person then he was 7 years ago. So am I. “B” has taught me so much. And together we are still learning.
He has taught me to be more patient, to look and observe situations before I react and he has conquered so many of his fears so I take my cues from “B” now. He has shown me that he can overcome his fears -- so I should try to conquer mine.
Taking this job with United Cerebral Palsy was the next turn in the road in my life. I never would have done it if it weren’t for “B”. I told him that too. I told him that I am so proud of all he has accomplished and all his fears that he has overcome. He smiled his impish smile at me when I told him I was so proud of him and that I was taking this job because if he could over come all his fears -- then I should take a chance and overcome my own fears. He liked that.
I have learned and continue to learn that I need to think outside the box. “B” has helped me realize that all people have issues.
A SPOONFUL OF HUMOR
MORE ABOUT CHANGES AND AGING FROM GEORGE CARLIN
George Carlin on AGING
Do you realize that the only time in our lives when we like to be old, is when we're kids?
If you're less than ten years old, you're so excited about aging that you think in fractions. "How old are you?" "I'm four and a half!"
You're never thirty six and a half. You're four-and-a-half-going-on-FIVE.... That's the key.
You get into your teens, now they can't hold you back. You jump to the next number, or even a few ahead. "How old are you?"
"I'm gonna be 16." Maybe you're thirteen, but - Hey - you're gonna be sixteen!
And then the greatest day of your life. You become 21! Yes! Even the words sound like a ceremony...."you become twenty one." Yes!
But then you turn thirty. Oooohhh... what happened there? Makes you sound like bad milk. "He turned, so we had to throw him out." There's no fun now. You're just a sour dumpling. What's wrong? What's changed?
You become 21. You turn 30. Then, you're pushing 40....
Whoa! Put on the brakes! It's all slippin' awayyyy....
Before you know it, you reach 50, and your dreams are gone.
But, wait, you make it to 60! You didn't think you would!
So, you become 21, you turn 30, push 40, reach 50, and make it to 60... You've built up so much speed that you hit 70! After that, it's a day-by-day thing. You hit Wednesday... You get into your 80's and every day is a complete cycle!
You hit lunch, you turn 4:30, you reach bedtime... and, it doesn't stop there. In your 90's you start going, "I was just 92...."
Then, a strange thing happens. If you make it over 100, you become like a kid again! "I'm 100-and-a-half!"
May you all make it to a healthy 100-and-a-half.
HOW TO STAY YOUNG
1. Throw out nonessential numbers. This includes age, weight and height. Let the doctor worry about them. That is why you pay him/her.
2. Keep only cheerful friends. The grouches pull you down.
3. Keep learning. Learn more about the computer, crafts, gardening, math, whatever. Never let the brain idle.
“An idle mind is the devil's workshop." And the devil's name is Alzheimer's.
4. Enjoy the simple things.
5. Laugh often, long and loud. Laugh until you gasp for breath.
6. The tears happen. Endure, grieve, and move on. The only person who is with us our entire life is ourselves.
Be ALIVE while you are alive.
7. Surround yourself with what you love, whether it's family, pets, keepsakes, music, plants, hobbies, whatever. Your home is your refuge.
8. Cherish your health: If it is good, preserve it. If it is unstable, improve it. If it is beyond what you can improve, get help.
9. Don't take guilt trips. Take a trip to the mall, to the next county, to a foreign country, but NOT to where the guilt is.
10. Tell the people you love that you love them, at every opportunity.
And always remember...
Life is not measured by the number of breaths we take, but by the moments that take our breath away.
Coming soon to Autism Friends! Parent tips, ponderings and wisdom!
Autism Friends is a Member supported website run by a parent. We are always looking for parent contributions! Book recommendations, photos, best links, personal stories, poems & artwork by our creative geniuses. Contact Tina at: email@example.com. Tina”
2. THE GENEVA CENTRE announces: Geneva Centre International Symposium is scheduled for October 23, 24, 25, 2002 at the Metro Toronto Convention Centre. The Symposium 2002 brochure has been mailed out and is available at http://www.autism.net. This year you have the option to register on-line; major discounts for early bird registrations. Also, for the first time, delegates from around the world can access 8 presentations of the International Symposium 2002 live through the Internet. Some presentations have special interest for adults on the autism spectrum.
3. Autism Children’s Intervention Services Inc. (http://www.aciscanada.com/) Grace Damouni, Director/Founder - 8171 Yonge Street, Suite 226, Thornhill ON, L3T 2C6, Tel 416. 219 2316, Fax 905. 832 3139 E-Mail: Grace@aciscanada.com
“Certified in PECS, Sensory Integration (went to Florida and took the course/lab with Pat Wilbarger), Greenspan’s Early Infancy and Childhood course (Floortime/DIR), training in Lovaas, workshop in Handwriting Without Tears, degree in psychology and most importantly, many, (9) years of clinical work with children with PDD/Autism.
I work very closely with Dr. James Bebko of York University and Dr. Carolyn Lennox who are the consulting psychologists to ACIS.
I am proud to say our IBI program is very comprehensive as it includes collaboration with SLPs and OTs as well as the educational team. We help develop IEPs and provide trained shadows for classroom integration.
We do travel outside of the immediate catchments region (once every month or two depending on the time of year) to administer staff training, consultations, assessments and program development. We will travel to Guelph, Hamilton, Cambridge (for example) but only during certain times of the year. However, we do not provide ITs (mediators) to service this region although we can train staff that the family has already recruited. For parents who are not interested in hiring a "team" we can set up the programs/binder.
We do however, provide "teams" and oversee the program for our catchment region, which is Markham, Pickering, Aurora, Richmond Hill, Thornhill, North York, Maple, and Woodbridge. If families live within this region we can offer a "team" with full services (assessments, programs, supervision etc) and this ranges in price from $20,000 and up depending on the treatment plan the family has in mind (we offer different plans). In this regard we are very flexible which I believe makes us unique-we customize plans so that we are able to take into consideration the families needs/expectations. Grace Damouni, Director/Founder”
4. Workshop Emphasizes Teaching Verbal Communication Skills to Children with Autism and Other Developmental Disabilities - Dr. Vince Carbone is a Board-certified Behaviour Analyst with over 25 years of experience designing learning environments for people with autism and developmental disabilities. He provides preparatory training and clinical consultation to certified behaviour analysts, teaches university courses, and consults with schools, agencies, and families. He is the developer and presenter of a series of workshops on teaching verbal behaviour (verbal communication skills) to children with autism.
Dr. Carbone will be conducting a 3 day intensive workshop "Teaching Communication Skills to Children with Autism and other Developmental Disabilities: Introduction to Verbal Behaviour" on October 28, 29 & 30, 2002 in Oakville, Ontario. The cost of the workshop is $400.00 per person if registered prior to August 15, 2002 and $425.00 per person after August 15, 2002. The workshop is sponsored by Express Yourself Speech, Language and Communication Services. For more information please call 905-333-9730.
Participants in Dr. Carbone's workshop will learn (1) to conduct a Behavioural Language Assessment, (2) to select the most appropriate form of communication for a child, and (3) to identify the communication responses and supporting skills that should be taught first. He shares a special emphasis on teaching verbal behaviour to the most difficult to instruct learners.
Through methods of errorless teaching, specific quick-transfer procedures, and the use of discrete trial training Dr. Carbone has helped many children improve their communication skills. The natural environment and intensive teaching sessions are both employed during program implementation. Dr. Carbone's introductory workshop will provide parents, teachers, therapists, psychologists, and speech-language pathologists with practical information
for program planning and implementation.
5. ANNOUNCING Children's Residential Respite at Reena Commencing November 2002 Families who have children with Autism Spectrum Disorder between the ages of 9 - 15 are invited to attend an information session When: Thursday September 19, 2002
Where: Toby & Henry Battle Developmental Centre, 927 Clark Avenue West, Thornhill
Time: 7:00 pm
For further information and to RSVP, please call Brenda Rothenberg, Manager, Community Outreach (905) 889-2690 X 2226.
Refreshments will be served.
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(C) 2002 BBB Autism
Archived issues (too many to list here) are available by link in HTML, plain text and PDF on our website at www.bbbautism.com/news_arch.htm
BBB PARENT GUIDES
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2. Epsom Salts (Calcium too) – expanded version
3. Epsom Salts – condensed version
4. Pros and Cons of telling your ASD child his/her diagnosis
5. How we advocate for our children
6. Guide to holidays and large family gatherings
A notice to our readers...
The editor of this newsletter and founder of the BBB Autism support club is not a physician.
This newsletter references books and other web sites that may be of interest to the reader. The editor/founder 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/founder.
The editor/founder 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 or beliefs of 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 – September 2002
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