AUTISM SUPPORT NETWORK/AUTISM
(YORK REGION CHAPTER)
VOLUME 3; ISSUE 4
JANUARY 31, 2002
n. pl. he·roes
am an extremely lucky woman!
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 spectrum disorder.
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!
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!
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
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
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!
Please cut and paste this address
into your browser: http://www.bbbautism.com/poll_1.htm
(choose Poll #1)
your child with ASD displaying particularly challenging behaviors lately
(January and February)?
Please choose POLL
when you vote here: http://www.bbbautism.com/poll_1.htm
We’ve 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
Inspirational thought for the
day: The Key to Inner Peace
may have found inner peace. My therapist told me the way to achieve inner
peace was to finish things I had started.
Today I finished 2 bags of potato chips, a lemon pie, a bottle of red wine and a large box of chocolate.
feel better already.
…Found 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 BREATHE!
By BBB Member Sue
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
recently using 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 more.
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!
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
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.
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.
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.
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
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.
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
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 need.
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 beginning.
dream is for my son to be happy, confident and able to make his way in this
Member Becca Lynn “My 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 labeled PDD-NOS.
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.
C is 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
M 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
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
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 Day in the Life
– 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 another coffee.
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!
a recent poll we conducted, parents were asked about the books they’ve found
most helpful. Here is what they recommend:
Let Me Hear
Your Voice by
Bridges Through Sensory Integration
by Ellen Yak, Shirley Sutton and Paula Aquilla
Parents’ Guide to Autism
by Charles A. Hart
on One by Marilyn Chassman
Syndrome by Tony Attwood
From the Start by Sandra L Harris PhD and Mary Jane Weiss PhD
Work in Progress by Ron Leaf and John McEachin
Child with Special Needs by Stanley Greenspan
the Mystery of Autism and PDD by Karyn Seroussi
to Parenting a Child with Autism By Marlene Targ Brill
Anthropologist on Mars by Oliver Sacks
Aspergerger’s, Huh? By
Rosina G. Schnurr
Intervention for Young Children with Autism edited by Catherine
World of the Autistic Child by Brynna Seigel
Handle with Care by Gail Gillingham
Diets for Special Kids by Lisa Lewis
by Lorna Wing
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!
ARE ALL HEROES…HERE ARE SOME HOMEPAGES and/or WEBSITES BY PARENTS
Note: To me, the Mothers From Hell epitomizes 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
Etiquette: What You Need to Know
Jean Yates, reprinted (with permission) from the Mothers from Hell newsletter,
Vol. 8 No. 1, Feb/Mar, 1999
Jean Yates lives in Pound Ridge, NY with her husband Jim and
five sons, two of whom have autism.
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 going to
learn you a thing or two. Let's do it!
(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.
(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.
("DUDE!") Nothing to say here. I finally say The Big Lebowski, that's
(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.
(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.
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?"
PARENT EMPOWERMENT WORKSHOPS
Limited Enrolment. Email email@example.com Location: 11181 Yonge Street,
1A New 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
1Wills and Estates ~ Robyn Solnik TUESDAY,
FEBRUARY 19, 2002
1Art Therapy ~ Nancy Wood, Art Therapist TUESDAY,
MARCH 5, 2002
1Siblings of Children with Autism ~ Victor Predo,
TRE-ADD TUESDAY, MARCH 26, 2002
1Autism & Sexuality ~ Deanna Pietramala, Leaps
& Bounds TUESDAY, APRIL 9, 2002
1Social Skills ~ Deanna Pietramala, Leaps &
Bounds TUESDAY APRIL 23, 2002
1School Discipline & The Exceptional Student
~ Lindsay Moir TUESDAY, MAY 7, 2002
1Behavior Management ~ Deanna Pietramala, Leaps &
Bounds TUESDAY, JUNE 4, 2002
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Volume 1; Issue 1 WELCOME ISSUE!
Volume 1; Issue 2 SUMMER CRISIS
Volume 1; Issue 3 SPOUSAL CONCERNS
Volume 1; Issue 4 SENSORY INTEGRATION
Volume 1; Issue 5 CHALLENGING BEHAVIORS
Volume 1; Issue 6 BACK TO SCHOOL
Volume 2; Issue 1 IEP
Volume 2; Issue 2 KEEPING YOUR COOL - WHEN YOUR EMOTIONS ARE ON FIRE
Volume 2; Issue 3 DEALING WITH STRESS
Volume 2; Issue 4 GIFTS FOR THE CHILD WITH ASD
Volume 2; Issue 5 ONE CHILD’S STORY – A TALE OF LOVE AND INTERVENTIONS
Volume 3; Issue 1 SURVIVING THE HOLIDAYS
Volume 3; Issue 2 HOW TO ENJOY DISNEY WORLD
Volume 3; Issue 3 PARENT (AND GRANDPARENT) PIONEERS 2002
INFORMATION BY PARENTS FOR PARENTS Available on request, e-mail firstname.lastname@example.org and ask for: (now available in PDF format)
Epsom Salts (long version)
Epsom Salts (condensed)
Pros and Cons of telling your ASD child his/her diagnosis
How we advocate for our children
Guide to holidays and large family gatherings
notice to our readers...
founders of this newsletter and the BBB Autism support club are not physicians.
editor reserves the right to make decisions as to whether contributions are
appropriate with respect to content, length, etc. We will not publish offensive material using foul language,
or contributions that are inflammatory or disrespectful to decisions by other
parents (i.e. therapies). We do not generally accept contributions if they are
ads for private service agencies/clinics. We are also unable to accept
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 - 2002
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