AUTISM/AUTISM SOCIETY ONTARIO
VOLUME 3; ISSUE 4
JANUARY 31, 2002
1. In mythology and legend, a man, often of divine ancestry, who is endowed with great courage and strength, celebrated for his bold exploits, and favored by the gods.
A person noted for feats of courage or nobility of purpose,
especially one who has risked or sacrificed his or her life: soldiers
and nurses who were heroes in an unpopular war.
3. A person noted for special achievement in a particular field: the heroes of medicine. See Synonyms at celebrity.
4. The principal male character in a novel, poem, or dramatic presentation.
I am an extremely
Every day I get to meet
with and talk to extraordinary heroes. Every time I fire up my computer,
there are emails from amazing people, there are chats to attend and there
are messages to be read on the BBB Autism message board.
When I go to meetings and courses put on by the Autism Society of
York Region, I meet many more. These
truly are individuals who are noted for feats of courage or nobility of
purpose. These are people who are parents of children with an autism
This issue obviously
contains only a few of the absolutely wonderful people out there.
There are thousands (millions?) more, but the idea of this issue is
to celebrate we, the parents - and all our hard work.
The people I contacted were all bewildered that they would be
considered role models for the rest of us…well, I think that is part of
what makes them heroes; they don’t even realize how special they are!
This is not necessarily about the work these parents do,
but the way they do it. They are positive and are inspiring
in that way. Heroism is not all
about advocacy, politics, running programs or following a diet (although
that is certainly part of it). Although those are great and noble things,
not all of us have the time, energy or funds to do those things.
Sometimes heroism is just living day-to-day, taking time to smell
the roses, enjoying our children and maintaining a sense of humour
throughout it all! J
Being an everyday hero is about being a parent and loving
your child the best you can…doing what you can with what you have.
We are not all rich; we don’t all have Cadillac therapies
happening for our kids. But we are making things work with a smile on our
faces (most days, anyway).
Let’s face it; every parent is a hero; whether his or her child has special needs or not. These parents represent a few of my personal heroes and I hope their stories will inspire, comfort and nurture you as well. Please join me in getting to know them!
Please note: Our
children our precious to us. We always substitute their real names for an
initial (unless otherwise requested).
Additionally, we never include last names of contributors (or any
personal information) without permission.
If you have any trouble opening graphics or have any other
questions, please let me know by email: mailto:firstname.lastname@example.org
on the bee to talk to me!
LAST CHANCE FOR POLL #1
will be closing Poll #1 (concerning ADD, ADHD and ASD in families)
February 14. Please take 10
seconds (that’s all it takes) to follow the link below and vote.
of our upcoming polls will be just for fun.
We will send results of the others (like the one below) to Dr.
Jeanette Holden (e-mail, mailto:email@example.com
who is doing this kind of research in the field.
first poll is concerning the incidence of ADHD and ADD in a family with an
individual with autism spectrum disorder.
Polls are voluntary and totally anonymous. Thanks in advance for your participation! J
Please cut and paste this
address into your browser or click on: http://www.bbbautism.com/poll_1.htm
(choose Poll #1)
child with ASD displaying particularly challenging behaviors lately
(January and February)?
Please choose POLL
#2 when you vote here: http://www.bbbautism.com/poll_1.htm
had more than a few posts on our message board lately with respect to
increased challenging behaviors. Want
to trouble shoot with us? Join our discussion here: http://www.network54.com/Forum/118931
I may have found inner peace. My
therapist told me the way to achieve inner peace was to finish things I
Today I finished 2 bags of potato
chips, a lemon pie, a bottle of red wine and a large box of chocolate.
I feel better already.
in my inbox (thanks, Di)
a woman has to choose between catching a fly ball and saving infant's
life, she will choose to save the infant's life without even considering
if there is a man on base." Dave Barry
DON’T FORGET TO
life is hardly heroic. I am, to put it bluntly, a survivor... and that does not
mean the kind who goes to Pango Pango for a few weeks to eat rat meat, and who
gets money as a reward. Actually, mine was a bit more complicated than that. Not
any easier, really, either.
to paraphrase one of my favorite comedians, "I started out as a
that, when I was 18, my mother and stepfather started what was then called a
"Home Care Facility" out of Orient State Institution, caring for
mentally retarded adults who were being moved out of the Institution, which was
later closed and turned into a prison. We had between 7 and 12 patients there at
any one time, all over age 21 and most over age 60. They were mostly profoundly
retarded, although I think that this was not a particularly accurate diagnosis
for them all, originally. The Institution used to take kids who were considered
difficult or incorrigible. We had one blind woman who actually ended up not
being all that mentally disabled, although she had a lot of problems from
sitting for the past 60 years. I mostly ran it while my mother and stepfather
worked elsewhere, far away, coming home for occasional weekends. This means
cooking, cleaning, laundry, diapers, meds, charting, ordering supplies,
everything. I got maybe one night off a month, if I was lucky. This lasted about
three years. (No, I wasn't paid).
we had no Autistic individuals there, I did read voraciously, (still do), and
ended up getting into reading about Autism and other disorders .I also had a
brief course in what was then The Skinner Method or Behavioral Conditioning -
now evolved into ABA. Not much, but a little of it. Mostly where they shove
marshmallows into mouths for doing a tiny step of the desired behavior
correctly. I did learn more about this later, and also got into the Sonrise
method. Then I met friends who had CP and they had undergone
"Patterning" at the "Institutes for Human Potential" in
after the home closed and my mother divorced, I left her and eventually went to
nursing school in another part of the state.
married after graduation, to an Iranian, (probably the only one in the States
without a rug), who came here with a Fullbright scholarship to get his second
MA, in linguistics this time. He had one in Education and taught English, of all
things. He died after a decade of marriage, of Lymphoma. He did not teach while
we were married, however. He did get certification but no one would hire him
because of where he was from. He mostly ended up making salads in a restaurant.
I ended up working a lot of overtime... often 72 hours a week. After he died I
did try sitters. That was hell, literally.
(they were) Stealing. Abusing the kids. Simply not showing up.... I gave
up after a bit over a year and filed for ADC and SSI. This took an unbelievably
long time to get - 8 months - and has a lot to do with the faith I have today. I
mean we never missed one meal... just awesome how things went. Rough, though.
Not at all easy. Ever...This is no
free lunch, guys. They make you *pay*!
had four children, two of whom are Autistic. I guess the diagnosis would be
PDD-NOS, now. They do change things. "Behavioral Communication Disorder
With Autistic-Like Tendencies" was the phrase before PDD. J, now 22 and
Facilitated Communication with some success is also severely ADHD and
microcephalic due to hypoxia at birth. R, now 18, is Hyperlexic, and can read
you the NY Times and not miss one word. He can even spell them all perfectly.
What he can't do is understand most of them. Both of my sons are fairly low
functioning. J is now in a group home about 80 miles away. I miss him and hate
this, but keeping him at home is not a safe option for him as I am also now
nearly deaf and have Menier's Syndrome, and he has an impulse control deficit
and loves to run outside in the traffic.
have two children who are also theoretically NT - although this is pretty iffy,
if you ask me. JJ, who is 20, is mildly ADHD and a genius as well as a chronic
underachiever who has been in Who's Who in High School twice and yet nearly
flunked his senior year when he decided to learn guitar and be a (Punk) Rock
Star. L, my 16-year-old only daughter, is also brilliant but has had CFS. She is
a junior in high school and is presently being home schooled.
to keep sane? Who said I was sane? Not meee! hehehe.... I still read
voraciously, and as much escapist novel stuff as I can, like Sci-fi and Who Dun
It's. I pray. I still meditate. I love music. I try to learn something new every
day, (which is really not that hard, especially now that I am online). I stay
curious... and that keeps me alive, I think. Counting my blessings reminds me
that there is always someone who has less to work with than I do. It also
reminds me that I also have the Big Man, Upstairs, to thank for an awful lot of
things. Laughter, also, is a big factor in my survival. Without humor, I would
not have made it.
Dreams? Well, around the beginning of this year, my first love, (back from when
I was ten and he was the 12 year old boy next door), found me online. We have
been talking ever since. We plan for me to return to California this spring and
see what we will see... umm? I guess I hope I will have a life after motherhood?
Maybe.... Just imagine! I turned a half century old this year! And I am still as
giggly as any teenager, which is silly, but oh I am having a ball!
Mostly with the school systems through the years. I have lost more battles than
I have won. Most of the ones that I won were lost, later, when they would make
new laws the following year. Getting J into any school program at any time and
keeping him there has been a life long struggle. He has been denied services off
and on for his entire life.
are a chronic struggle. My husband's death did not leave me much to cope with,
monetarily. Being technically disabled, myself, with a hearing loss, does not
my brother said once, "Life is not supposed to get that hard." So,
maybe his isn't and he mostly has avoided mine. My family is not supportive at
all. My mother has psychiatric problems. My sister, whom I was close to, died
last year of cancer. No one catches me when I fall. It has been mostly going it
alone... even when I was married, my husband was so deeply into denial about our
sons' problems that he did not acknowledge that there was anything wrong with
the oldest until not long before he died, and never did realize that anything
was at all different about Raud, despite all my trying to get intervention.
Mostly, it has just been fighting... and yeah I have a pretty bruised rear,
sometimes. Still, nothing else to do but pick up and go on.
Ummm.... I guess I am a lot stronger than I ever thought I would be, although I
will tell you that I feel pretty broken down at times. Life goes on whether I am
broken or functional, though it is smoother when I am able, and so I try to hang
in there and keep my head as clear as possible. Not very easy at times, though.
I have a different perspective from most of the people I know. Frankly, many
people's problems seem so trivial. I mean, can you imagine getting upset over a
ding in the fender? Not me... All seems so Sturm und Drang, dramatized; in
comparison to the way things are in how I see life, anyway. I just cannot
imagine why some people strain at gnats so much, and I am frankly turning into
the *big* old lady who will get all crotchety and tell them whatever is on her
mind. I want to knock them upside the head and tell them to count their
blessings and shut up!
guess that is my reward. I have four beautiful children whom I adore madly, even
though the NT ones drive me bananas.... (you think that Autism is hard? Try an
ADHD teenager)? My kids are terrific, just so sweet and special and I would not
change one hair on their heads unless it would be to make them happier about
things. I mean, talking would be nice, but it would not make me love them any
thing I have tried to do, off and on, is to make sure that not quite so many
moms go it alone, the way that I have had to. My path has been pretty solitary,
and more difficult than it would have been if I had been able to have someone to
turn to with some of my questions or concerns, or even just someone to listen. I
have been online for a bit over a year and it is like a whole new world, here,
and boy! Do I relish the e-friends I have made! I am turning into a social
butterfly, I guess.... and love every minute of it! Even though' my 16 year old
daughter still insists that I am too old to need a social life online!!!!
take each day one at a time. If that is too much, make it one hour at a time,
one minute at a time, and don't forget to breathe!
Love you! - Sue
Diana - BBB Autism Member
Liz seems to think that I am some sort of hero, but
really I am just a mom! I have 3 children, 8, 6 and 4. The 6 yr old and the 4
yr. old are my boys and they both have autism. My daughter is 8 and the best
big sister that you could imagine. I have a husband that works very hard to
keep us in diapers and all the essentials of life...and he also makes enough
so that I can stay at home and make sure that things run, "sort of"
smoothly around here.
Balancing the needs of everyone in this house may
seem like a daunting task, but it is something that we seem to have
accomplished. The boys needs do tend to come first. They have IBI therapy,
daycare and school, when they have free time, they hang out at home, and enjoy
respite outings on occasion.
We try very hard to make sure that our daughter
gets the attention that she needs. We use our respite hours very wisely. Some
are for my husband and I to enjoy time out, and some is so that we can take
our daughter out without her brothers. Family outings are not always
successful, and she should not miss out on activities because of her brothers.
On occasion, she gets out with our respite worker also, because she sees the
fun that they provide for the boys and she wants to be included in that.
I always find time to get out by myself. Whether
that is Girls' Night Out with some good friends, or just grocery shopping
alone. These things are important. I play softball in the summer and for those
few hours I leave the world of autism, and I get to be ME, not a mom of
autistic children. My husband also gets time to himself. We all need space!
The thing that keeps me sane are my friends, and my
outlook. I refuse to wallow in self-pity ....that does not mean that I
don't have bad days. because I do!!!, but I know that feeling negative and
sorry for myself or my kids is counter productive. I am always reading and
looking for information. I don't just jump into things lightly. I weigh it all
out and I research. The computer has been the best thing that has happened to
me. It provides me with information and information is power! The
Internet has also opened up a whole new world of support for me. I have very
good friends that know what I am going through, and understand. That is
important and through opening up with them, I am learning about them but also
myself and my children! Helping others is very important to me. I am kind of a
'behind the scenes' type of person. If I can help one parent at time, then I
feel like I have done something worthwhile. The kind of help I give may be
just a laugh to someone who has not laughed in a while or perhaps a shoulder
and an ear. We all need people to lean on!
Faria – President of Autism Society Ontario – Halton Chapter
‘A’ was diagnosed three days before his third birthday.
The doctor told me to get him some speech therapy because statistics
showed 50% of ‘these children’ never speak and he was nonverbal at this
point. Her parting comment to me
on that day was to "Be prepared to put him in a home when he reached 16
because he would be bigger than me then and chances are impossible to
handle". We didn't have a
computer then nor did I have a clue how to even turn one on and I knew I had
to research for answers, because I wasn't willing to accept the doctors
prognosis for my son's future. So
I left my stores in the hands of a 17 year old to run them while I hit the
libraries everyday. It took 3
months and a mountain of books until I found "Let Me Hear Your
Voice". It was the first
book that gave my son a chance at a future, I kept going until I found all the
research journals that backed up ABA... and we've never looked back since.
I hired Autism Partnership to head the program, at the time I choose
them for one reason only... Ron Leaf and John McEachin,
the directors, had been part of the original "Young Autism
Project" at UCLA. They had
been part of the team that had recovered children from Autism... so they new
it was possible. No one locally
would even consider such a possibility.
At the time a well-known local agency was just starting an ABA
pilot project and had asked me to switch my son's program over to them.
When I asked their representative how many children he had recovered
from autism or if he even believed recovery was possible (to make a long story
short) his answer was "No, children don't recover from Autism".
I told him then that I could not put my son's future in his hands, if
he didn't believe in it and shoot for it, then my son would never have the
chance to meet it.
Now four and a half years later and still in a home program,
I wouldn't consider him recovered... though I would venture to say he's
sitting on the edge of it. He has
two best friends, he is near the top of his class academically bringing home
all As and Bs, none of the kids in his class think that there is anything
wrong with him... other than his jokes suck and he's gullible at times.
He is in grade two with support for only one afternoon a week (an ABA
trained volunteer). He has come a
very long way...He loves the Pokemon, Digemon and the Power Rangers, he plays
little league baseball and soccer (for me these accomplishments are a dream
that I thought was lost for my child when we received his diagnosis).
He's seven years old and he sticks up for his little sister at school
as does she for him, she's six years old.
She has an active play date for other children with autism in their
home programs, actually she's like a walking miniature therapist, redirecting
her play dates with comments like "No, you can do better try again"
or "Do this", and best of all she has no idea that there is anything
wrong with her brother, she has no memory of what he used to be like... she
believes his therapists are teachers ... simply to help him learn.
Yet at just six years of age she can pick out a child with autism
easily saying "Mommy that little boy is like my friend George", but
she never connects it to her brother.
Does she miss out on things, I'd be lying if I said no...
there is less money to put her in all the programs she'd like to be in and if
the time slot of a program conflicts with his therapy, then therapy wins out.
She gets less one on one time than I wish... but her parents have much
better parenting skills due to the ABA training they have received so she
receives better quality time. Has
she suffered... a little yes, overall no I don't think so... instead she has
gained a brother who is now capable of sharing and participating in the
experience of being a sibling. Not
having that would have been a huge loss to her life and a burden to her as she
How I handled it in the past, is different than some... the
same as others. When he had
behaviours in public... I spoke up about the root of his behaviours to people
who glared the icy judgmental stare we all come to know so well. Why? honestly because explaining it was easier sometimes for
me to handle but I also looked at it in this light... if I let people know
that he wasn't just a child that misbehaved but that it was autism... then
maybe the next time they saw a child behaving like this that they wouldn't
assume he was just being bad and give the parent un-needed grief... maybe they
might help the parent instead of being so quick to judge them as having poor
parenting skills. I've heard lots
of parents say, "I owe no one an explanation and I don't tell people
anything, it's their problem"... that's okay too... each of us has to
handle it the way that works for us at the time.
Today life at our house is relatively normal, meaning that we
can go anywhere and do anything as a family now, autism isn't a factor in what my son can accomplish.
It still means we deal with issues because he has difficulties, but
they can be handled by staying calm and talking through it, or worst case
scenario we incorporate it in his program and he's gets it in no time.
To date my life still revolves around
autism, because you still need to advocate and fight for what they continue to
need to be successful, and because I volunteer in our local ASO chapter.
It's been almost five years since he was diagnosed, though most of the
time it feels like a lifetime ago, when really it's just yesterday in a lot of
respects. It's still just under
the surface, I remember all to easily how the bottom of my world fell out when
I left that doctor's office, all my hopes and dreams for my son wiped out in a
20-minute appointment. At the
time I would have killed to have a parent who had been there to walk me
through it, tell me what to do and where to go... they were out there but we
were isolated from each other... when I met my first parent we were at the
same place so we muddled through
together. As time went on we met
many more parents and we tried to help and learn from each other.
Sometimes it was good sometimes not, we can't and won't always see eye
to eye just because our children have the same diagnosis, but we can agree to
try and educate each other and then hopefully not judge each other for the
choices we make that are different.
Now I just try to help a new parent along so that they don't
have to waste time searching for answers, but can get going with helping their
child get what they need. I'm not
an expert by any stretch of the imagination, I only know where I've been and I
draw on that to help new parents, if they are interested in a treatment I'm
not familiar with then I can help connect them to a parent who does that
model. Really in the end
it's not about us the parents it's about the kids and getting them what they
My hope is to help parents and lessen their confusion on how
to help their child when their world is spinning out of control in the
My dream is for my son to be happy, confident and able to make
his way in this world.
Member Becca Lynn
Children, My Heroes”
Hi my name is Becca and I am Mom to four precious Angels.
From youngest to oldest they are R (12), A (11) Gifted/Major Depressive
Disorder, C (9) born with a minor DNA abnormalities, and M (7) and currently
children are my heroes each in their own special way. R is my hero because he
does a wonderful job living with so many special needs siblings.
He is generally kind, well balanced, tolerant and forgiving.
It’s a big weight life has put on his shoulders being the older
brother to so many needy younger ones. A is my hero as he has managed to not
only survive a major depression but to cope with many smaller ones as well.
Major depressions are ghastly horrid things filled with tremendous pain
and suffering. They are also
extremely terrifying too. But our
A has not only weathered the storm but is gradually learning to heal himself.
I admire him for his determined inner strength.
And his capacity to believe in a better tomorrow.
Not an easy thing when you’ve met major depression face to face.
my little heroine because she has always struggled with phobias, fears and
anxieties. Terrified out of her
mind the little mite would clamber up my body like a monkey right to the very
top. Nor would she let go.
She was afraid of so many things but she has been able to overcome all
of her fears. Perseverance and
patience, shaking and trembling, crying, wailing, fear.
But slowly she learned to self-talk herself through each and every
fear. C is my heroine because she
can feel great fear and do the terrifying anyways.
is a heroine in her own right. She
is a heroine as her very existence and accomplishments inspire everyone who
touches her life. Here is the
child destined to stay a half-mute inside an Autistic bubble.
This she did not in any way, shape or form. M is a heroine because her heart and soul are pure and as she
interacts with the world she shows that purity that exists in the heart of
every autistic child. And in her
everyday actions she demonstrates how the world would be if they just laid
down their hatred and unkindness. When
she wraps her arms around her sister, or her teacher, or a friend and cries
aloud to the world her inner love. That’s
why M is my hero. It’s the
purity of her love.
my name is Brian and I have one child Kyle age 6 diagnosed with autism and also
Chris Age 5 (neuro-typical). Currently
I share joint custody of my boys with my ex-wife. She has them on the nights
that I work (Thursday through Sunday) and I have them through the week when I am
off. I have gone back to college to get a degree in Network Administration and
Support. So I don’t miss any time with the boys I take classes during the time
when they are in school and study after they are in bed or on the days that they
are with their mother.
spend time doing things that both boys like to do and try to take them out when
I have them. I have an aide that comes and helps watch Kyle for 3.5 hours a day,
which really helps with taking care of both boys’ needs. I tell people at work
and school about the situations that contributed to Kyle's situation and am
finding out that a lot of people who have had to get their vaccinations redone
for working at the hospitals have ADHD/ADD or Autistic kids.
try to workout at the gym when not in school etc and that helps a lot to clear
my mind (no comments from the peanut gallery please). Also I spend time looking
at things on the Internet and scanning the news for information to help Kyle.
am the mother of six children. Three
have autism, one has ADD, another has speech delays and the last has multiple
health difficulties. Balancing
the needs of all my children and my husband come first in my list of
priorities. They all have to know that I love them, and they have to have
their physical needs met. Anything
after that is extra...volunteering for Cub Scouts, working in a parent
organization and going back to school have to take second place for me.
are a few things I do for myself, to keep my sanity.
I get up an hour earlier than everyone else, just to enjoy the quiet.
Even if all I do is sit there and stare, wrapped up in a nice warm
blanket, I feel it is still worth it. In
the warmer months I work in my vegetable garden.
Plants don't run out into the street, and you can see results from any
small efforts you may put into them. My
greatest luxury, though, has to be a long, hot shower. J
am a member of a small group of parents in our school district who are
organizing a Special Education Parent Advisory Committee.
It is hard work right now, gathering parents together to get it all
started, but I am sure it will bring good results in the end.
We hope to aid parents in their efforts to find good programs for their
often find myself searching the Internet for answers to my questions about
ASD. I am afraid I spend a little
too much time doing it...there is so much to learn!
I try to share that information with friends and family members when I
can. I am in a local (internet)
group of parents of children with ASD, and we share ideas when we can. I pass on so much information from this BBB Autism
website...it is truly my favorite place to come for ideas!
– a humorous peek into the life of Becca, BBB Member
1. Mommy wakes up, stumbles out of bed and into the hallway. M meets
Mommy in the hallway, yelling family fun night! Mommy finds a coffee and
returns to bedroom. Husband spies her and says Coffee? Mommy goes looking for
2. The dining room table is wobbly. Seems to be missing some screws. There is other furniture with screws missing. Mommy finds some screws lying around but can't locate the holes they belong in. Makes mental note that someone has been messing with screws. Goes and looks for screwdriver - screwdriver is mysteriously missing. Hmmm!
3. Mommy finds M by the window with the screwdriver. She appears to be quite busy. "What are you doing?" Mommy asks. Apparently, M was fixing the window! Looks like M has been fixing a lot of things around here. Mental note to unfix the fixed tomorrow and find new hiding place for screwdriver.
4. Mommy is distracted when cooking. Accidentally puts seasoning in all hamburger patties after being distracted by screwdriver incident. Mommy forgets that seasoning in all the hamburgers is a problem.
5. Dinner is served. M loves hamburgers and lots of ketchup. She wants the bun separate. Mommy compiles. M commences eating. Suddenly there is a wail; "I don't like hamburger! This is not tasty, not like other hamburger!" Mommy apologizes and makes mental note to keep at least one hamburger unseasoned! Mommy disposes of hamburger in tummy receptacle. (Yum, very tasty!) M requests that her bun be washed. Mommy looks at bun. It appears to have been decorated with two hamburger eyes and one hamburger nose. Me claims the bun is unfit for consumption unless cleansed. Mommy compiles. Mental note: Mommy has never washed a bun before.
6. Older brother, Reilly, Mommy's only completely normal child requests earplugs at the dinner table. Mental note: Mommy will retest hypothesis that older brother is’ normal’.
7. Everyone is wearing earplugs at the table, except Mommy and A. Mommy talks to A. Ay says Huh! Mommy remembers on his IQ test his highest score was under an area called powers of non-distractibility. Mental note: evaluate validity of what IQ tests evaluate.
8. M says loudly, "Family Fun Night!" and goes upstairs. Mommy doesn't think about what M is doing upstairs. Daddy arrives home, gobbles dinner and talks excitedly about a new exciting fun game! Time to go to family fun night at the school! M is nowhere to be found. M is located, in Pajamas. "I thought it was night time," she said. Mommy had to agree - it was nighttime! M got clothes on. Daddy and four children left the house with great fanfare (lots of noise)! C held M's hand (very touching). Mommy reminded older brothers to take care of their father in case he got lost or slipped and fell. Mommy closed door with Mommy on the inside!
9. Mommy had fun!
Books that Inspire! Readers’ Favourites!
a recent poll we conducted, parents were asked about the books they’ve found
most helpful. Here is what they recommend:
v Let Me Hear Your Voice by Catherine Maurice
Through Sensory Integration
by Ellen Yak, Shirley Sutton and Paula Aquilla
A Parents’ Guide to
Autism by Charles A. Hart
v One on One by Marilyn Chassman
v Asperger Syndrome by Tony Attwood
v Right From the Start by Sandra L Harris PhD and Mary Jane Weiss PhD
v A Work in Progress by Ron Leaf and John McEachin
v The Child with Special Needs by Stanley Greenspan
v Unraveling the Mystery of Autism and PDD by Karyn Seroussi
v Keys to Parenting a Child with Autism By Marlene Targ Brill
v An Anthropologist on Mars by Oliver Sacks
Aspergerger’s, Huh? by Rosina G. Schnurr
v Behavioral Intervention for Young Children with Autism edited by Catherine Maurice.
v The World of the Autistic Child by Brynna Seigel
v Autism: Handle with Care by Gail Gillingham
v Special Diets for Special Kids by Lisa Lewis
v Linda Hodgdon Books
v Books by Lorna Wing
v Simon Baron-Cohen
v Temple Grandin (2)
v More than Words by Fern Sussman
…Looking for a good list of ASD reading that includes
title, author and ISBN? Email me at mailto:firstname.lastname@example.org
and ask for the BBB reading list!
…Looking for a good list of ASD reading that includes title, author and ISBN? Email me at mailto:email@example.com and ask for the BBB reading list!
WE ARE ALL HEROES…HERE ARE SOME HOMEPAGES and/or WEBSITES BY PARENTS
|Dana’s View from the Inside: http://autismchannel.net/dana/|
|Bernie: Ariel's Home Page|
|“Sully’s Story” http://pages.sprint.ca/autismfriends/cjfam.html|
|‘Autism Friends’ designed, implemented and maintained by our very good friend, Tina: http://www.geocities.com/autismfriends/home.html|
Note: To me, the Mothers From Hell epitomize the hero. They are battling for their kids with humour and grace. If you haven’t paid them a visit before, please take the time to do so now! J http://www.mothersfromhell2.org/
Jean Yates lives in
Pound Ridge, NY with her husband Jim and five sons, two of whom have autism.
Ever since the first (not the last either!) person came up to me and
asked: "what is the MATTER with your kid?" and, when I replied,
"He's autistic" said, with way too much gusto, "gosh!! that's
HORRIBLE! I am SO SORRY for you!!” I have felt there should be a guide, an
etiquette book of a sort for special ed situations. As with "classic"
etiquette, there is a crying need for people to get a handle on how to behave at
certain times and in certain places. So I'm here to fix all of you and I'm gonna
learn you a thing or two. Let's do it!
Attitude: (you KNOW what this
is!) Your attitude is something you can control. You cannot control the attitude
of others. Therefore, I suggest, that whenever a little something goes awry,
possibly, for example, when your child removes all his clothes in the grocery
store and you can't find half of them, you take a deep breath, tell yourself
something affirmative - something that works for you personally (I usually say
to myself, "I am a Supermodel on vacation in the Bahamas!") Then
quietly rectify the situation as best you can. In a grocery store
"incident" for example, you might pile cases of diet soda like a tower
around your naked child until only his head can be seen. Then march serenely
past the checkout counter and casually toss them a twenty. If anyone says
anything, just say, loudly, but non belligerently, "WHAT?” A lady's
attitude will take her far in Special Circumstances.
Fortitude: (That means
strength) You must be stout hearted though not foolish when you entrust your
child to the hands of his teachers. Of course, do your research and call as many
people as it takes to find out if this is an appropriate school for your child.
If the timing is right, I am sure you have already done this. Why am I sure?
Because I have met countless parents of countless special ed children and I have
never seen such a bunch of hard working, loving, devoted people than the members
of this group. But, equally as important to your child's well being is your own.
In order to stay strong, you're gonna have to SLEEP sometimes. That is Special
Ediquette rule #2: If you don't snooze, you lose. And try to be strong about
going to the movies sometimes. And if you do go to the movies, and you see a
good one, would you mind writing me and telling me about it? Thanks.
The Dude: ("DUDE!")
Nothing to say here. I finally say The Big Lebowski, that's all.
Pulchritude: (That mean
beauty) "Everything is beautiful, in its own waaaaaay..." The song is
a little corny and yet so true. I may be alone on this one, etiquette wise, but
I believe that if you have a special needs child you should knock yourself out
to keep your son or daughter as clean and well dressed as you possibly can. This
acts as a defense against the odd person who might make negative judgments about
your child. It also shows your child's teachers in an unspoken way how much you
love and value your child. At this point, many people can see clearly enough to
see the beauty of our children, both inside and out. But for those that can't,
show them. And while you're at it, stop wearing your husband's t-shirts and
boxer shorts around the house as a daily outfit. Oh wait. Maybe that's just me.
Beatitude: (That means
blessedness) The final lesson for today (please be here next Tuesday for tea;
watercress sandwiches and lemonade will be served.) This has to do with our
"public relations problem" as parents of special needs children. Has
anyone ever said this to you: "you're a Saint!" or how about this:
"My, my, you certainly have a full plate!" How do you feel when
someone says things like this to you? I feel A) Awkward because I am not a
Saint... at least I wasn't the last time I looked, and B) angry because my
differentness has been pointed out. In fact, I don't even HAVE any plates-- my
wild man kid broke them all. Here's how I'd like to be seen: just struggling,
the same way anyone does, trying to raise a family, trying to get some plastic
plates that can go in the microwave.... oh I don't know -- just being me.
I have found the optimal response to the Saint and Plate (Pause and
silently imagine you are a Supermodel on vacation in ... London, yeah, London)
then smile serenely and say, "why yes, I AM a Saint and yes, my plate IS
full. Would you like to BABYSIT?"
UPCOMING PARENT EMPOWERMENT WORKSHOPS
Registration Required, Limited Enrolment. Email firstname.lastname@example.org Location: 11181 Yonge Street, Richmond Hill
COMING IN 2002…
Diagnosis of Autism Spectrum Disorder; A Time-Line Continuum ~ Margo Allen,
Early Intervention Services and Liz C, BBB Autism/ASO York Region, Darlene
Spence, York Behavior Management TUESDAY, FEBRUARY 5, 2002
Estates ~ Robyn Solnik TUESDAY, FEBRUARY 19, 2002
1Art Therapy ~
Nancy Wood, Art Therapist TUESDAY, MARCH 5, 2002
Children with Autism ~ Victor Predo, TRE-ADD TUESDAY, MARCH 26, 2002
Sexuality ~ Deanna Pietramala, Leaps & Bounds TUESDAY, APRIL 9, 2002
Skills ~ Deanna Pietramala, Leaps & Bounds TUESDAY APRIL 23, 2002
Discipline & The Exceptional Student
~ Lindsay Moir TUESDAY, MAY 7, 2002
Management ~ Deanna Pietramala, Leaps & Bounds TUESDAY, JUNE 4, 2002
To subscribe, e-mail email@example.com
please provide your name and location. To unsubscribe, e-mail firstname.lastname@example.org
please write 'unsubscribe' in subject line. If you think you know someone who might enjoy or benefit from these
newsletters, kindly forward us their email address at email@example.com
request, email firstname.lastname@example.org
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!
to reproduce and hand out is granted, provided the document is displayed
in its entirety. Other permissions may be requested by e-mail: email@example.com
PRACTICAL INFORMATION BY PARENTS FOR PARENTS Available on request, e-mail firstname.lastname@example.org
and ask for: (now available in PDF format)
Salts (long version)
and Cons of telling your ASD child his/her diagnosis
we advocate for our children
to holidays and large family gatherings
notice to our readers...
founders of this newsletter and the BBB Autism support club are not physicians.
editor reserves the right to make decisions as to whether contributions are
appropriate with respect to content, length, etc.
We will not publish offensive material using foul language, or
contributions that are inflammatory or disrespectful to decisions by other
parents (i.e. therapies). We do not generally accept contributions if they are
ads for private service agencies/clinics. We are also unable to accept
contributions after an issue has been completed. We reserve the right to edit
content, but will inform you in advance if we are going to do this. J
BBB Autism - 2002
E-News is the intellectual property of BBB Autism Support Network.
to reproduce and hand out is granted, provided the document is displayed in its
entirety. Other permissions may be requested by email: email@example.com.
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.