BBB AUTISM SUPPORT NETWORK/
AUTISM SOCIETY ONTARIO
(YORK REGION CHAPTER)
KEEPING YOUR COOL (WHILE YOUR EMOTIONS ARE ON FIRE)
About this issue....
For this issue, we
wrote to some parents and professionals asking them the following questions:
1. What are your
tips for keeping emotions under control in circumstances such as: school
meetings, uninformed/rude public and when having to reiterate your child's
history and most personal information to countless agencies.
2. How to
handle the lack of respect of parties offering strategies and advice that
parents are wary of. This could be a friend, stranger, agency, family who don't
live with autism 24/7, offering advice that is inappropriate to every day life.
(An example is the OT who told me I had to take my child to the park and swing
him five times per day! I got so frustrated trying to explain how
illogical this was to an unhearing professional that I almost lost it.)
3. How to keep your
emotions under check around your kids.
We were looking for
strategies on how to get our points (as parents) across, without becoming a
newsletter is the result of the wonderful input I got from professionals and
parents. These articles are originals, written exclusively for this newsletter
and the links are the most useful found by these people.
Many thanks to those who helped make this issue possible!
OUR FEATURED ARTICLE
KEEPING MY COOL by BBB Member Sonya
I live in a small town (about 3,000 people)
and this town thrives on gossip and rumor. It is a terrible feeling to walk down
the street and have everybody whispering behind you and pointing when your back
Generally, it is pity my fellow citizens
project. What they don't understand is that I don't want their pity.
To the people always handing out advice that
obviously have had no experience with an autistic child, but somehow think they
are an authority of some sort, I simply nod and then turn and walk away.
Generally, I walk away laughing and doing so very hard. I used to try to explain
to these people why their suggestion will not work, but they just argue with you
or look at you with a complete dumb expression and lack any comprehension. So,
just don't bother with it. I guess the reason I wait out their
"advice" is because I want them to leave the conversation with good
feelings towards me. I used to dish out smartass comments to everyone
until one day I realized that these people are walking away feeling that I am
downright rude and then they "develop" a negative attitude towards all
people with autistic children. I don't want that. It is better to respect the
fact that they are not trying to tell you that you are a bad parent; they are
just trying to help you. Their advice is usually worthless, but just hear them
out and then go on about your business.
To the people who treat me and my family so
rudely as to make comments about us, especially the people who make these
comments in front of us, I hold nothing back. Whatever my mood is at that
particular time, is what they deal with. I generally get right in their face and
ask them why they said this or that. By putting them on the spot, they generally
When they make comments about my child's
behaviors, I have been know to walk right up to him/her and say something to the
effect of, "This child has been diagnosed with autism. That explains his
behavior.... what is your excuse? Ignorance? Or just plain stupidity?" They
generally stand their in total shock that you've said this and completely
silent. At that point I say, "Yeah - I thought so!" and walk away.
For the days when I'm in a good mood and
refuse to let somebody get me down, I have business cards that I printed up on
the computer to hand out. On one side it says, "Please don't let this
child's behavior disturb you. He has Autism. Disruptive behavior is one of the
many symptoms of a pervasive development disorder such as autism." And then
on the back side of the card, it says, "Autism is a neurological
disorder that causes problems with communication, behavior and learning.
With intensive help, many people with autism can learn to compensate. For more
information, please contact: The Autism Society of America http://www.autism-society.org/1360 Beverly Road
#300 McLean, VA 22101 800/3-AUTISM. DONATIONS GLADLY ACCEPTED". I
generally just walk up to the person making the rude comments and hand him/her a
card and then walk away. SAY NOTHING.
I hope this makes them feel guilty and even
causes them to send in a donation out of this guilt.
My best word of advice to everyone is to talk
to their personal doctor. If you can find a female doctor in your area, I would
switch to her. Don't get me wrong...male doctors are fine; they just don't
understand the woman's psyche like another woman does. Do you find yourself
coming to tears easily? Over every little thing? Have you concluded that you
hate your life? Do you often daydream you are someone else? With a different
I recently began using Prozac at the
suggestion of my female doctor. I cannot tell you how this has changed my life.
I no longer find myself weeping and I am able to let a lot of the little
bothersome things slide. I always thought that I really didn't care what others
thought about me as long as I respected myself, but I found out that I felt
sorry for myself.
And you can't respect yourself if you feel
you've been slighted. The Prozac keeps me calm so that I do not blow up at
strangers and family anymore. I am much more tolerable.
MY EMOTIONS/MY CHILDREN
by ASO York Member Lynda
I let my kids see me cry, sob, wail, vent,
boil over ... BUT NEVER GOT PHYSICAL. I then used it as a teaching opportunity
after I calmed down. My then 4 year old son (not ASD) was literally my shoulder
to cry on, my other therapist for my (2 yr old) ASD son's home programming etc.
At that time their father's work would take him away from home for 4-5 days at a
time, 4 times a month.
I firmly believed in being totally honest
about my emotions, labeling it - giving them the language to understand it,
modeling that it's just as natural and justified to feel sad, angry, frustrated,
frightened or hopeless as it is to feel happy, excited, thrilled, grateful,
goofy or melancholy. They got to see that I could feel sad and then recover. My
eldest is still confused about his mother's 'just 'cause' crying at times, but
he brings me a Kleenex anyway.
I feel this is how both my sons learned
empathy, caring and helping others as well as not being frightened of or ashamed
by their emotions. Even my now 19 yr. old ASD son will try to make me feel
better if he sees I'm crying - he can't talk, but he can see my tears and will
rub my arm as his way of giving comfort. He doesn't seem to understand the
nuances of emotions in others, but will definitely respond appropriately to
tears or laughter in others.
The way kids, all kids, perceive their world
is entirely different from an adult's perspective. I clearly remember an
incident when I was 8, seeing my mother sobbing for the first time ever. She
wouldn't tell me what was wrong. I started crying hysterically too, firmly
convinced that she MUST be dying from cancer. I was terrified. Surely only
something that profound would reduce my mother to such a state.
Hours later over dinner, my parents were
laughing and saying sorry to each other for such a silly argument.
Dealing with adults is completely different,
however. We must keep our emotions in check, act responsibly and respectfully to
others even if it seems they are intentionally hurting us. (usually there's no
malicious intent, just mindlessness) However, sometimes blubbering has been an
A QUESTION, AN ANSWER AND A BOOK
REVIEW BY DR. ROBERT NASEEF, Ph.D.
1. How do you get rid of or channel the huge
amount of anger you feel when you have to fight the "system" to get
the services that your child needs? Recently, a mother wrote to me saying that
she felt like she could explode. "I get so drained and discouraged at all
the fighting you must do to give your child what he deserves. It just isn't
fair!" she stated.
It sure isn't fair. You have plenty to be
angry about. Human hardship is not distributed equally, as Rabbi Harold Kushner
wrote in When Bad Things Happen to Good People. I often recommend
this little but profound book to the parents of children with special needs.
Rabbi Kushner himself lost a child to a rare disease and knows all too well the
struggles of parents. I remember myself all too well how angry I was when my son
was seven years old. I had a hard time accepting that he would need special
services for the rest of his life. I walked around with a chip on my shoulder -
ready to rage and ready to cry.
If the universe is unfair, it sometimes seems
reasonable to become embittered and chronically angry. But most parents don't
want to go through life this way, so a new sense of what is fair is needed.
Kushner speaks to this ages-old question about justice that appeared in the
Bible. He reminds us that "Anguish and heartbreak may not be distributed
evenly throughout the world, but they are distributed very widely.
Everyone gets his share."
Sometimes even the children who are the
closest to "normal" but still needing specialized services and
programs can be very challenging.
Certainly many of us have felt, as you
describe so well, "drained and discouraged at all the fighting you must do
to give your child what he deserves." It may help you to think about what
other feelings you may have besides the anger. Is there fear? Sorrow? Worry?
Guilt? What would be there if the anger vanished?
Anger, one of the most intense and least
understood human emotions, is probably the scariest and most socially
unacceptable feelings to own up to. It often arises with the thought, "Why
me? Why did this have to happen to me?" Losing something precious hurts and
seems unfair. Parents want someone or something to blame. It might be
themselves, each other, the doctor, toxic waste, or the local school district.
Parents who have children with special needs
are trying to make sense out of what has happened - "If we are decent
people, how could this happen to us?" Why do we have to push and fight for
what seems only fair? Parents need loved ones and friends to allow them to
experience anger, to cry, and to scream. Indeed what has happened is terrible,
and it makes no sense. Trying to be patient by holding the anger in only
prolongs the pain.
Resolving anger depends on coming up with a
new definition of fairness in the universe. If you believe that the universe is
fundamentally unfair, you will remain chronically angry and embittered - walking
around "with a chip on your shoulder." On the other hand, many parents
have been able to use their anger to activate and energize themselves in the
struggle to get the best possible services and education for their child's
special needs. In this way parents can actually make the world behave more
fairly toward their child.
Psychology offers a concept that can give us a
handle in channeling anger into effective assertion - in the case of obtaining
services for a child with special needs. There is a continuum from passive to
assertive to aggressive problem-solving styles. The characteristics of each of
various styles are described by Robert Alberti and Michael Emmons in Your
Perfect Right, a classic self-help book.
The assertive person, in the role of the
parent of a child who has special needs, thinks and acts in ways that back up
the child's legitimate rights. An assertive parent can express strong thoughts
and feelings without putting down the thoughts and feelings of another. She can
attack a problem with respect for the professional's knowledge, and establish a
pattern of respect, thus avoiding the buildup of anger often caused by
miscommunication. The assertive parent is both respectful and self-confident
while requesting the services his or her child needs.
One mother told me how angry she gets when
professionals don't hear and understand her. The problem reminds her of
difficulties she had with her mother while she was growing up. Once she could
refocus on the love and dedication of the professionals who work with her
daughter every day, she was able to calmly and clearly express her thoughts,
which usually resolves the problem.
While these are general considerations, I
would recommend that you channel some of your energy into a parent organization,
such as the Autism Society of America, www.autism-society.org or the ARC
(http://www.thearc.org/), or UCP (http://www.ucpa.org/), etc. Connecting with
other parents who are either just starting out on this journey or further along
can be priceless. You may also want to channel some of your intense feelings
into an advocacy organization that helps other families.
Anger is part of the hurt. Gaining perspective
and learning how to be assertive helps to heal the heartbreak. It takes time and
support. If nothing else, our special children teach us patience - with them,
with ourselves, and with the world around us.
2. Accepting and Honoring Our
Everybody's Different: Understanding and
Changing Our Reactions to Disabilities
By Nancy B. Miller and Catherine C.
Sammons Paul Brookes. 359 pages. $21.95
No parent wants their child to be noticed as
different from the norm. You want a healthy, happy child who fits in and
makes you proud. But what do you do when your child is different? Speaking for
myself, I had a hard time when my son was diagnosed with autism many years ago.
I walked around looking out of the corner of my eye ready to pounce upon people
for their reactions. Actually it was more my perceptions of their reactions. Not
to mention the perpetual knot in the pit of my stomach. Like many parents whose
children are different, it felt to me that I was battling the whole world.
I wish we had Everybody's Different,
the new book by Nancy Miller and Catherine Sammons, much sooner. Life is
definitely easier when you understand your own reactions as well as those of
others while realizing that you are not alone--not by a long stretch.
Everybody's Different: Understanding and Changing Our Reactions to Disabilities
is an enlightened and enlightening look at the many differences that exist
amongst people in every walk of life and which need not divide us socially. The
authors patiently and thoroughly help the reader to understand our internal
emotional reactions to disabilities and the differences that result from those
conditions. They teach us strategies to build our lives and our families and our
communities in a way that is inclusive and respectful of our differences.
Together the authors have over 50 years of
experience as practitioners who have worked with children and adults with
disabilities and their families. They begin by helping the reader understand how
and why we react to the broad spectrum of differences. All too often we are
limited by our assumptions about how people look, move, communicate, behave, and
learn. (Each of these categories of difference has a thorough chapter devoted to
it.) When people are different we tend to stare and compare, so learning how our
brains are actually "wired" to notice differences that seem unfamiliar
or unsettling is very useful.
From there we can move forward and develop
better understanding and increased skills for interacting with people who have
The authors present a useful model, which they
call "The 4D Approach." The steps involve: first, detecting the
difference; second, deciding or evaluating the situation; third, doing or taking
action; and finally, debriefing to make it better the next time. This approach
can be used in classrooms, communities, and work places by teachers, therapists,
and trainers, as well as by parents, relatives, and friends of people who have
differences caused by their disabilities.
Many of the chapters apply specifically to
children and adults with autism. Perhaps the most obvious difference is that of
behavior. When my son who is now almost twenty starts "stimming," I
automatically want him to stop and act "normal." Internally my
reaction can be rather desperate for I don't want him AND me to be noticed as
different. I also still find myself trying to avoid taking photographs when he
is not behaving "normally." There is a certain image I prefer of him
in my head, as much as I hate to admit that. But his behaviors are, after all, a
part of him.
Even though I would consider myself a veteran,
Everybody's Different helped me understand and own up to these reactions. It has
taken me some time, but eventually I am learning to love my son, Tariq, not
despite his differences--but rather because of them. The knot in my gut is long
gone. Now for the most part I can look comfortably around me. I can notice what
must have been there before--the friendly faces and kind eyes of compassionate
Everybody's Different provides
a rare blend of compassion, scholarship, and practical guidance in a style
readable by a broad audience. At times as the reader, I found myself wishing for
more passion from the authors. By the end, however, I realized that it was
precisely the authors' very balanced approach that is so useful. For those of us
who are parents of children with autism, the journey involves understanding and
changing our reactions to this very perplexing difference in our children. With
Everybody's Different, Dr. Miller and Dr. Sammons can help us get there a little
Robert A. Naseef, Ph.D., 514 South 4th Street,
Philadelphia, PA 19147 Voice: 215-592-1333, Fax: 267-200-0806
Special Families Website: http://www.specialfamilies.com/
ACTING CAN HELP...by BBB Member Becca Lynn
As I mentioned in a post yesterday,
ironically, the most successful technique that I have ever used to deal with
powerful emotions is "character acting."
The emotions do not disappear... nor are they
buried forever they are simply placed to the side. I literally pretend
that who I am is someone completely different... strong, sure of myself, happy
and confident. When my child is screaming I am the best mother that I can
envision... when I go to the school I am that together very sure of herself
I just create the role and play it.
People wonder sometimes... how can a bipolar
mother raise special needs children. I hear from some people that they don't
even think people with a bipolar diagnosis should work with any children. And
their feelings are very powerful....
They are right that I experience extremely
powerful anger.... what they don't understand is the power of self-control. You
don't have to say this experience is about now... or that its a legitimate
emotion. Maybe you are just feeling so miserable cause you are tired or burned
Many mothers of bipolar children actually post
during a child's temper tantrum. Now as you probably know these type of
explosive tantrums can last literally for hours. The parent has no
control. He/She is completely helpless to stop or control the rage. She (usually
it is the mother) is in a very painful place emotionally, trapped between
powerful emotions of her own and no way to stop her child. And she obviously
cannot leave the house so she is wedged into an emotional pressure cooker.
Something is going to blow. Such a situation is definitely rife with possibility
for escalating physical violence from both the parent and the child.
So what is she going to do? Many go online.
Right in the Middle of a powerful temper tantrum. And begin typing. They know
somewhere sometime people just like her are going to read what she wrote and
understand. That offers her emotional connection. The writing itself
relieves some of the emotional pressure. And the sense of community of a support
society helps her focus on what is the most important as far as being a good
parent. A phone buddy in the same city would also offer the same type of
You are who you choose to be. In the throes of
anger and other powerful emotions it is important to remember that every moment
offers a new choice. The dark side or the light side.... true the farther you
move towards the dark the greater its lure. But the same applies for moving
towards the light.
Acting is a powerful tool.... I am exactly who
I want to be. I would even suggest writing out scripts (at least in general) to
address trigger situations. Run through them in your mind and visualize yourself
doing things calmly and or efficiently. It does work wonders as does thinking
positively.... and I can be calm attitude really does carry a lot of weight
One of the methods that works for me anyways.
by Rhona Feldt-Stein, OT, Executive Director of York Paediatric Therapy Services
things I advise parents to do in my capacity as a professional are:
a list of all medical findings/results, educational or therapy assessments
(within the last 2 yrs.), psychological assessments, birth history,
developmental milestone history etc.
in a binder under specific headings as above and make copies when you are being
interviewed by a professional or agency. It is often helpful to ask the
person/agency you are going to see, if you can fax/mail your information ahead
of time, thereby cutting down on the interview time (they like that) and using
the time remaining more efficiently. It also saves the parent a lot of
aggravation and frustration going through it again, again ......
regards to "unsolicited advice" I often tell parents to say
"thanks for your interest but I've got to go" and then walk away or
just say "we're having a bad day". Everyone loves to tell their story
about a SIMILAR child/nephew/neighbor etc. but it takes time and makes the ASD
child frustrated to get on his way and the behaviour increases. Saying
"thanks" even when you don't want to leaves you smelling pretty and
doesn't ruffle feathers except your own. Its unfortunate but people are
not really all that interested in what you've already done but only in how they
can give you more advice. Sometimes you just want to say, "OK why don't you
take him and try some of your own advice and tell me what works!"
Uhmesh Jain at the Clark Institute has some wonderful parenting workshop (free)
at the Clarke on Monday nights. While it is not specific to ASD it has
wonderful some great behaviour management techniques.
this is helpful -- Rhona
Paediatric Therapy Services
Rhona Feldt-Stein, OT,
10520 Yonge St. # 21
Richmond Hill, Ont. L4C 3C7
Tel: 905-737-9680 Fax: 905-737-2445 email: firstname.lastname@example.org
AWARENESS FROM PEERS
by Deanna Pietramala, Director, Leaps and
I think unfortunately this needs to be done by
I think that people should go out and talk to
young children in schools as well as the older one. But when you get them young
and explain it the kids grow up with it and understand. This should also be done
at schools when parents meet (i.e.) curriculum night have a 10 min. talk per
class. Sure it may take some time but it is worth it. Yes schools say we have
the teacher talk to the kids etc. but it is not enough. They do not necessarily
now how to present it, so kids get it. Probably because they do not always
understand it themselves. That is not a criticism but the fact is there is still
a great lack of knowledge.
For my kids I do that, it makes a big
difference. The kids then see the behaviour is not on purpose and want to help
rather than make fun of the child etc etc.
When I have done TV. interviews and newspaper
interviews I have always asked that they include a section directed at parents
to have them realize what the kids and other parents are going through. They
need to be educated as well.
You know how many parent have come to me and
said you know I use to see kids act like my child out in the community at school
etc. I use to think what is wrong with that parent can they not control their
child. But now I know, unless you experience it you do not understand it.
Parents: understand and send out the
message that everyone deserve respect.
Deanna can be reached at email@example.com,
telephone: (905) 953-0569, FAX: (905) 953-0589
Parent Empowerment Workshops ~ Fall 2001 Lineup
Proudly Presented by Autism Society Ontario ~ York Region Chapter
BBB Autism Support Network
Required, Limited Enrollment. Call 905-780-1590 or email firstname.lastname@example.org
Location: 11181 Yonge Street,
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OUR FAVORITE LINKS
Contributed by Becca and Bernie, thanks, guys! :)
Who is the Only
Person in the World Who Can Make You Angry?: http://members.aol.com/AngriesOut/grown1.htm
Get Your Angries Out: http://members.aol.com/AngriesOut/
The Counseling Center for Human Development: Coping with Anger: http://www.usf.edu/counsel/self-hlp/anger.htm
Coping with Difficult Emotions: http://www.innerself.com/Behavior_Modification/coping_emotions.htm
Learning to Handle Stress: http://www.sparks.org/pma/stress.htm
Overcoming Negative Emotions: http://www.ec-online.net/Knowledge/Articles/emotion2.html
PARENTS HELPING PARENTS
A Parent's Guide
to Accessing Parent Groups by NICHCY: http://www.nichcy.org/pubs/parent/pa10txt.htm
BBB Autism Support Network: http://www.bbbautism.com/club_front_page.htm#club_new_front_page
Autism Society Ontario - York Region Chapter - contact email@example.com
Autism/PDD Community on About.com: http://autism.about.com/mbody.htm
CHATS: EVERYBODY IS INVITED!!!
HOW TO SET UP A HOME PROGRAM - Guest hosted by Kathy Lear, creator of Help Us Learn http://www.helpuslearn.com; A Self Paced Training Program for ABA - Thursday, October 4 at 1:00 pm, eastern time.
SOCIAL SKILLS FOR THE ASD CHILD WHEN RELATING TO A SIBLING, SOCIAL SKILLS
IN GENERAL AND KEEPING YOUR COOL...
Guest hosted by Deanna
Pietramala of Leaps and Bounds (Specialized Programming Service in Ontario) - Thursday,
October 11 and Wednesday, October 24; both from 1:30 to 2:30 pm eastern
Convert to your time zone
PLEASE NOTE: TRANSCRIPTS FROM APRAXIA,
CHALLENGING BEHAVIORS, EVERYDAY SENSORY STRATEGIES AND AUTISM AND ENZYMES CHATS
AVAILABLE UPON REQUEST firstname.lastname@example.org
"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 Mon-Fri at 1pm and
9 pm daily. If no one is in the chat room when you get there...give it a chance.
You never know who might drop in!
Adelle 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.
Copy/Paste this URL into your browser: http://autism.about.com/index.htm?rnk=c1&terms=autism
On the grey bar (under Adelle's picture) click on "CHAT".
Click on "Log on to Chat".
On this page: (a) Under "nickname", delete "guest" and type
in a name for yourself. (b) Choose your preferred "font size".
Click on "Connect" and after a very short time, your chat screen will
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.
chat questions, please email email@example.com
subscribe, e-mail firstname.lastname@example.org please provide your name and location.
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Volume 1; Issue 1 WELCOME ISSUE!
Volume 1; Issue 2 SUMMER CRISIS ISSUE
Volume 1; Issue 3 SPOUSAL CONCERNS ISSUE
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Volume 1; Issue 5 CHALLENGING BEHAVIORS
Volume 1; Issue 6 BACK TO SCHOOL
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CONTAINS PRACTICAL INFORMATION BY PARENTS FOR PARENTS Available on request, e-mail mailto:firstname.lastname@example.org and ask for: (now available in PDF format)
2. Epsom Salts (long version)
3. Epsom Salts (condensed)
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 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
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