SOCIETY ONTARIO (YORK REGION CHAPTER)
|VOLUME 4; ISSUE 2 FEBRUARY 28, 2002|
What is the definition of denial? A psychological defense; a mechanism in which
confrontation with an issue or reality is avoided by denying the
existence of the issue or reality.
Scanning the Internet and pouring over my books, I couldn’t
find very much about this topic as it applies to ASD/PDD. That
hasn’t stopped us before, so we are, once again, relying largely on
input from our wonderful contributors.
This time, we have a unique perspective: A husband and wife
who share the exact same story with us but from their own viewpoints.
They speak of their feelings about the diagnoses of their two sons and
their never-ending love for each other. The result is inspirational
and awe inspiring, and I could never thank Michelle and Rob enough for
Denial is not a totally negative reaction; it is a defense
mechanism that allows you to process some potentially difficult
information. The trick is
to not dwell there.
Acceptance: ac·cep·tance n.
Personally speaking, acceptance was a point I reached after I
stopped looking at my son as a child with autism and starting looking
at him as a child. The
autism is always there for us, but I don’t fear it. As a matter of
fact, I see it as part of my son.
I shook hands with it a few years ago… and we made friends.J.
In 1998, I attended the Geneva Centre for Autism’s
International Symposium http://www.genevacentre.com/ and
hearing adults with ASD speak about their lives was my epiphany!
I hope you enjoy this issue.
I once more give my sincere thanks to all the wonderful
families who searched their souls (and files) for their great stories.
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Denial - and coming to terms with my
By Michelle E.
I had a
beautiful son - R who was my first-born. He was everything I always wanted in a
first born - he had a wonderful disposition, slept and ate well and by the time
he was 11 months old – my husband and I decided we wanted 10 more just like
We got pregnant pretty fast with B - he was a difficult pregnancy and I was on bed rest for the last three months of my pregnancy due to lack of amniotic fluid.
B was another sweetheart newborn - a little colicky but after about 3 weeks and changing his formula 5 times - he turned into a smiling happy child.
R was 19 months old when B was born. He did everything quickly and was speaking in 3 word sentences by that time.
Months went by and life was nice. Busy - but I just loved being a mom to two beautiful boys.
We figured that B was a late talker (although he did say mama before DADA at 6 months). Looking back now - I realize there were problems that I didn't see but at the time I just thought R was doing all the talking for both of them. AT 15 months I started getting concerned - but kept it to myself. Apparently my husband, Rob was a bit worried too and kept it to himself. My mother ticked us both off by telling Rob when I was sleeping that she thought B was Autistic. He was appalled and said to my mom - "But look at all the things he can do" My mom - never to mince words lol - said to him – “Come on - you have an older son - look at all the things that he can't do that R did before 18 months”. I guess that hit home with Rob because he decided to take B with out my knowledge to his old pediatrician who had been in care of his brother (who has Downs syndrome) for 35 years. My mom - always the meddler lol - woke me up early to inform me that he was not going to tell me and just take him alone to see what he had to say. She insisted I go with him.
Thank God I listened to her and that she meddled because if Rob had to come home and had to tell me that my son was evaluated by a doctor with out my knowledge and that he had a developmental disability called AUTISM - neither of us would have survived!
Of course, I hated the doctor on sight, was ticked off at my mother and didn't believe any of it. He was just a late bloomer. I took him to three other pediatricians who wouldn't give me a straight answer – “Nah he'll be fine! Well he could have PDD…” (WHAT THE HELL WAS THAT???) I wondered – ‘well what ever it is - it’s better than autism’.
Rob knew way more about developmental disabilities - he "got" it when the doctor said it (the first one) because his brother had a developmental disability (Downs Syndrome). I, on the other hand, was happy to have him called anything but the dreaded "A" word and figured I could "FIX HIM” PDD, communication delayed, "had some issues", speech delayed etc. was better than autism.
Of course I will never forget the ride home from the doctor's office – Rob was driving - and we were both crying. My brother in law took the other two kids home so we could be alone.
I still didn't believe it - but I got right to work on finding out more on AUTISM and what to do for him. I was in complete shock over it. I LOATHED THE DOCTOR and my mother at the time. They were two instrumental people in my lives that made us face reality - and got B the help he needed EARLY on.
Ages 2-5 were the "bad years" although we got him into early intervention and a full time preschool handicap program that I had done my fieldwork in a few years back. (I had quit the decision to become a special ed teacher because it was way to sad to work with those poor children that would never make it to a ‘normal’ life.) Three years after I did my fieldwork there - B was enrolled in the exact same class that I had taught in - Ironic huh?
Still - he had his good moments and we had some good times that occasionally overshadowed the dark periods. B was extremely aggressive - and screamed constantly. I didn't know about Risperdal at the time but man we could have used it. We always knew B was smart - before he talked - he was writing long names like octopus and his name and other big words in chalk (his handwriting was neater at 3 then it is now). Then he started figuring out the numbers that corresponded to the letters. A = 1 B= 2 and so on and started writing out names and words in numbers. We were AMAZED; he couldn't be autistic - he was a genius J!
Then my mom got sick and we moved out of the area (school had no hope for him in our old town) and we moved to North Jersey to take care of my mom who’d had a stroke and aneurysm and who was getting better but needed care for the rest of her life.
At 4 I
tried to place him in a ‘regular’ nursery school still not believing that he
had autism. That lasted a few weeks - even though I had told the teachers that
he needed to be engaged at all times or he would wander off - they managed to
complain about him with in the first week or so. So I pulled him out after a few
Then we went to the new school system and registered him as preschool handicapped. I was not happy but I knew he needed help. They helped him right away - getting him into the right school with ABA (applied behavioral analysis) and socialization and eventually he made it to public school by the time he was 6.
I remember the child study team telling me he was classified as communication impaired and me asking them point blank – “DOES THIS MEAN HIS SENTENCE OF AUTISM IS OVER????” They looked strangely at me and said that was a school term not a medical diagnosis.
was in denial.
My mom never came out of the hospital - she died February 19th at age 59 and I was crushed! If there were one thing I could do it would be to thank her for being so blunt with us right from the beginning. At the time, I was so angry with her - I never did get to thank her.
B was still aggressive although the behavioral therapist saved me from jumping off my roof many a day and so did therapy.
When my third son D was born - I watched him like a hawk - it was not going to happen again - after all I tested negative for Fragile X (I was so naive back then)
He talked on time - then regressed. I was on it immediately - the doctor said not to worry about it – “…he could be a late talker.” (HE SAID THIS KNOWING MY B WAS AUTISTIC!!!) But I swung into action! We spent so much money on him with speech and a full time private special education school (they had cut funding for important things like that) and we started the whole process over again. At the first meeting - I said "Well - My other son was thought to be autistic but he isn't really...
more strange looks but after I said it it started to sink in my head. Not
completely though. I found the BBB Autism board and started reading the posts -
they were way too similar to my story.
B was Autistic - it slapped me in the face like the first time I had heard it. I credit finally coming to terms with it when I joined the BBB Autism board. All the members were so helpful and I couldn't believe that so many were going through the same or similar situations as me.
knowing more than I did 5 yrs earlier - now I wanted a diagnosis of Aspergers
instead of autism or high-functioning autism - I still couldn't stand that name.
So I asked my pediatric neurologist who specializes in autism and he bluntly
told me I can call it what ever I want – it’s the same thing - B is
on the Autism Spectrum and anyway I slice it (or call it) it will not change who
he is. He explained to me that it is a broad spectrum but it really hit home
So, I credit my finally being out of denial after 6 + years to the following people and groups - My wonderful husband who never gave up on me even when I was so down and out through all the bull --- we went through - I just wanted to die, and I blew up like a balloon and cried constantly - he has always been my biggest support system- and we have always been a team. And all the teachers who helped get B to where he is now and the BBB Autism Support Network who made me see that others were going through the same things and got me actively involved, my pediatric neurologist and the doctor I loathed and my mother - who would be so amazed at the changes in B today. I know she is looking down on us and keeping us safe and she is very proud - I wish she could be here for him now.
And all my
friends I have met through the various boards - tons that I have met - and tons
more that I plan on one day meeting lol. I value all your friendships so very
much - It means the world to me to have you as my friends and confidants.
Long story short - kids are doing well (still need work - we are all a work in progress) but things have gotten better and life in general is good.
A Father’s Perspective
By Rob E.
When my son
B was first diagnosed with having autism many emotions and thoughts ran through
me. The strongest among them was loss; a hole in my heart for all the
things he would never do, be or enjoy. In a very strange way, it was as if
someone had died - and perhaps they did - my “normal” little boy and the
typical hopes for the future were certainly no more. In their place were
sobering predictions about future outcomes, a family in crisis and a darkened
tomorrow. Many months ran together in a dark, almost gothic movie in my
head. I expected to wake up from this nightmare - but it kept on
continuing - affecting how I felt about our family, our future and life in
I am a fighter by nature; it is hardwired in to my brain. After a brief period of mourning I went about applying the full force of my intellect and tenacity to whoever stood in the way - teachers, child study teams, gawkers in public places and the rest of the world in general. My wife, who never gave herself the luxury of mourning and being inactive, was the general in our war to ‘save’ B. I was more like the marines; storming the beaches and securing the victories, which the General said, had to be won in the early going.
You never win this war - but you can have a lot of victories along the way. If you pile up enough victories; your child “may” just approach the level of hopes and dreams you originally set for him. This is the best you can hope for - there is no cure - and even this lofty status requires many battle scars. Under the direction of our General, we ended up here - the promised land of sorts - for parents with autistic children. However, we really paid the tolls for this success - which exacted a heavy price on our marriage, our family, our sense of self and even our health during this difficult time.
We are in a new, better place in all these areas now - years from the original diagnosis. My wife and I are closer than ever, our family hums along with the chaotic joy brought about by a loving environment, Michelle and I have taken control of our personal and professional lives and determined we would look and feel the best we possibly could. I had dinner with her and another couple just the other night. I recall looking at her all through the evening and thinking how fortunate I was that this beautiful, elegant creature - smiling and confident - would be coming home with me. She was the most fabulous woman in the room - and there were many others - but none could even come close to her.
Which leads me to a final reflection on all of what we have been through together. If I had to do it all over again, I would have been more involved in the very early strategic decisions. Even though we have been so blessed by B’s success, the “General” paid a heavy price for directing this war. She suffered through depression, anxiety, low self-esteem and a myriad of other injurious conditions for years after we first heard the sad news. Perhaps some of it was unavoidable - and everyone’s situation is different. However, while I had the security of knowing which beach to land on she had to wrestle with the more difficult questions of if we should be on this beach or the next one. She counted on me early on for the muscle and she was the engineer. Unfortunately, these are life-changing decisions from which the engineer faces demons of self-doubt and second-guessing. The muscle can relax when its work is done until it is needed again. The engineer must live with her decisions - forever.
I do not
believe it is a coincidence that we now share both the muscle and general roles
and as a couple and family are supremely well adjusted. Michelle can be as
tough as 100 Marines and I can be as calculating as Perry Mason in the last five
minutes of his show. We share the roles - and the responsibility - more
evenly. Michelle is still the expert, but we make more decisions jointly
because she has educated me and I have stepped up to the plate. It is too
easy to let your significant other handle the decisions and deal with the
fallout. This goes beyond traditional issues within child rearing and the
subsequent roles - no one is prepared for this - so be prepared to assist the
general from day one. I believe in doing so, you will lesson the awful
burden placed on your wife. The father needs to make clear these are our
children, our decisions and OUR consequences. Thus, the success - or lack
of success - is shared as well. No one person should have to hold up under
that kind of pressure - it’s just not fair.
As I write this Valentine’s Day is coming up. My wife and I are married 11 years and I can proudly say that I am married to my best friend - and one of the most beautiful, elegant and engaging women anywhere. I would match her up against any starlet or demy-god. She can meet them on looks, beat them on style and crush them on character. I would be lying if I said it was like this every day for 11 years; but it is now and we have had a lot more good than bad days. Perhaps that is what you, as a husband, gain as a prize in the end if you hang in and do the right thing. You wind up with a person who is closer than ever and whom you respect and admire more than you thought possible. When all is said and done I have two heroes in my life - based on their courage and will to live life - my wife Michelle and my son B. Two of the most glorious people ever put on God’s earth.
IMPORTANCE OF DENIAL, by
is important because it allows you go on without falling apart, and eventually
come to acceptance. Denial is one of the stages of grief, so is anger,
bargaining, depression and acceptance. Denial is an important part of the
process of grief, but if you get stuck in denial it can be dangerous for a child
because parents are the ones who oversee their therapeutic interventions.
What Point Did you have an Epiphany Regarding Your Child’s Diagnosis?
have a very good friend who is a psychometrist. One day we were discussing
how J always cried. I told her some lady in a park mentioned autism and
what a ridiculous thing to say. She
said to me "But J communicates, right? I mean, he points to what he
OH MAN!!! Then I knew.
had a friend who was a public health nurse. Her son had a lot of sensory problems and she was
getting him Occupational Therapy through Early Intervention. She told me
about the book "The Out of Sync Child", I read it and knew that
my child also had sensory issues. I began to read more about sensory
integration, and kept running into section on children with autism but I
usually just said, "Well, my kid doesn't have autism- he talks,
etc" and skipped the section. Something made me decide to read the
section on autism, and as I read about the sensory issues, the problems
with language, social, and obsessive tendencies I knew. It was before his
diagnosis and I knew what the doctor was going to say. I began to inform
friends and family so the blow would not be so hard on them (seems funny
knew she was different than the way the "neurologically typical"
expected her to be but then so were hubby and I. We considered M to have
strong characteristics that we were aware of from the time she was a
baby.... but we didn't consider the characteristics to be bad.
It was the difficulty with speech that upset us. The rest was just personality characteristics that in M were harmless. We didn't feel that society had the right to label her because of these characteristics. We were actually aware that M's characteristics were autistic-like... unless that had hurt her or caused her pain we didn't feel it was necessary to do anything with that awareness....
I guess we did
come to an awareness over time that some of those characteristics had the
potential to damage her potential and growth.... but that awareness was gradual
and evolved simply from living with her and observing her as a human being....
don't think I've ever had one. I still grudgingly accept it. I made myself
keep referring to N as autistic and the more I did it the easier it got.
It took a load off to just accept it but there was never really any big
epiphany. I didn't believe the first Speech Language Pathologist who
mentioned PDD and then I denied it but began reading stuff, checking out
web sites getting bogged down in that whole is it Autism or PDD definition
mess. I was always more concerned about the apraxia because I KNEW he was
trying to talk even though everyone said it was just jargon.
for me when my sister had said she only knew of one other child as busy as
H (she worked in child care) in her years of working and when the special
education evaluation team concurred basically the same when they said,
"He is the most severe case of ADHD we've seen." That was
pre-PDD-NOS and Asperger's dx (when he was just 3).
I remember the director of children's church pulling me aside and wise woman she was) very gently telling me that she hadn't observed any empathy from H when other children were crying or any joining in on their songs- he was just too busy and would never look you in the eye.
have a really good friend that said to me at my son's 2nd birthday party,
"It's kind of weird that he doesn't seem to care about what's going
on and the presents and stuff." IT IS??? Duh.
my oldest AS child...my second son...My mother had been away from him for
about 3 months, and noticed a big difference in him. I started noticing
his problems after that, and doing my own research. Doctors told me he was
just fine, but I knew they were wrong. In my searching for answers, I
found a book about autism. Finally!!!!! It truly described my son. It took
me another 4 years to convince doctors that I was right.
With the next one, I knew he had ADHD...hard to miss that...but I knew there was more to it. I knew his negative behavior was the result of things in his environment. A good OT at our school discovered the sensory difficulties and started us on our way to the autism diagnosis.
My youngest son was a little different. I stayed "in denial" for a long time with him. I would see a problem, then explain it all away. "He's just taking his time. He's picky. I'm just imagining it." My mom came through for me again. One day, when she was visiting, I looked at my 4-year-old son sitting in his high chair, facing away from everyone else so he would be able to eat. I said..."He's autistic, isn't he." She said, "Yes." I needed her blunt answer to get me back into reality.
My son was born only 16
months after my daughter (about 5 weeks early) and it was obvious from 3 months
old that he was not reaching typical developmental milestones.
He also screamed constantly. He
would start shortly after my husband left for work in the morning, stop for each
meal and each nap, start up again, then stop a half hour before my husband got
home at night. He screamed anywhere
from 3 to 8 hours per day, less on the weekends.
I started questioning our
pediatrician after 3 months and continued to do so every time we were in there
for a ‘well baby visit’. She
always said, “He’s fine, he’s a boy, he’s big, he was early. He’ll
catch up!” I would go home feeling okay for a few days, and then I’d start
to get worried again.
My sister-in-law is an
M.D. and she suggested we make another appointment to discuss our fears when J.
was 15 months old. She urged us to tell the pediatrician that J. flaps his
hands. When I mentioned this, the pediatrician sighed and said, “Oh, I know
what she is thinking, and you can tell her for me that he is NOT autistic!”
Autistic? Huh? Where did that come from? I went home, once again in
Two months later, I was
in her office again, frustrated and scared.
I demanded to see her and very firmly (quite loudly too) said, “Something
is going on with my son. He has no communication at all. He doesn’t even
point!” She wordlessly set up an appointment with a developmental
Very nice lady, this next
doctor. She watched J. for 15 minutes, asked us a few questions and
announced he had PDD. When I asked
if that meant autism, she deftly dodged the question. Two weeks later, we saw a
neurologist. The official diagnosis from him was, “Good looking boy with a
speech delay. I don’t think he has autism.” said this learned professional
while my boy sat in the corner spinning the wheels of toy cars.
Eventually, we saw a
wonderful psychologist who, along with her staff, administered a battery of
standardized tests, and presented me with a comprehensive diagnostic report. She
told me in no uncertain terms that my son had autism and was developmentally
delayed. But she also gave me hope, direction and introduced me to ABA (applied
behavioral analysis). I remain in this woman’s debt to this day.
I returned once more to
that pediatrician. When I told her about J’s diagnosis, she nodded wisely and
said “Just as I thought!” I was so appalled, I found a new doctor for both
my kids within days. I had to pay
to get their medical records, and scoured J’s for any of her thoughts that my
son had autism. There was no
mention even of my repeated concerns in the entire file except when he was 17
months old, and I had insisted she refer us to a specialist.
My experience was that
these professionals kept me in denial by their avoidance to discuss autism.
Watching videos of my son now (when he was two) it was so obvious he was
severely affected by autism, but no one had the guts to tell us.
Yes, we eventually got help and my son was still diagnosed quite early
(starting around 18 months) for that time, but the thought of those
professionals doing their best to keep me in the dark still bothers me!
A SPOONFUL OF HUMOUR!
YOU NEED A NEW DOCTOR
- He calls you at two in the morning "just to talk."
- Instead of rubber surgical gloves he wears oven mitts.
- He keeps accidentally referring to himself as "the defendant."
- After examining you, he says, "Now do me."
- He thinks Eastern Medicine was developed in Long Island.
- He keeps accidentally referring to your legs as "drumsticks."
- His examination room is Room 201 at the No-Tell Motel.
- He introduces you to his anesthesiologist, "Doctor Jim Beam."
- Before surgery, he asks if you want this "to go."
- He tries to color your X-rays with crayons
Mothers From Hell 2 http://www.mothersfromhell2.org/
PARENT EMPOWERMENT WORKSHOPS
Registration Required, Limited Enrolment. Email
email@example.com Location: 11181 Yonge Street, Richmond Hill
Art Therapy ~ Nancy Wood, Art Therapist TUESDAY,
MARCH 5, 2002
Siblings of Children with Autism ~ Victor Predo,
TRE-ADD TUESDAY, MARCH 26, 2002
Autism & Sexuality ~ Deanna Pietramala, Leaps
& Bounds TUESDAY, APRIL 9, 2002
Social Skills ~ Deanna Pietramala, Leaps &
Bounds TUESDAY APRIL 23, 2002
School Discipline & The Exceptional Student
~ Lindsay Moir TUESDAY, MAY 7, 2002
Behavior Management ~ Deanna Pietramala, Leaps &
Bounds TUESDAY, JUNE 4, 2002
Learning Centre is proud to present “Understanding Applied Behaviour Analysis:
Practical Applications for Autism” on Friday, April 5, 2002, 9:00 a.m. to 5:00
p.m., at Manulife Financial (200 Bloor Street East, Toronto).
REGISTRATION BEGINS FEBRUARY 25, 2002!
Speakers and topics include:
CAMERON, Canadian Journalist - Opening Address
DAVID CELIBERTI (keynote speaker), Director of Training & Research at Eden
II programs in Staten Island, New York - ABA:
What it is, what it isn’t, and what it
implies for educating children with autism
DAVID CELIBERTI (keynote speaker), Director of Training & Research at Eden
II programs in Staten Island, New York – What about me? Understanding and
addressing the needs of siblings.
GERENSER, Executive Director of Eden II programs in Staten Island, New York - Enhancing
language in children with autism
HOROWITZ, Director of Education Services at Eden II’s Genesis School in
Plainview, New York - Doctors,
Dentists, and Haircuts: applying behavioural teaching techniques in real life
LEN LEVIN (formerly from Alpine Centre, New York) & DR. SYLVIE DONAIS,
Kinark Family Services (Central East Preschool Autism Services) - Behaviour
management: decreasing challenging behaviour, increasing appropriate behaviour
MEISSNER, Program Director at New Haven Learning Centre - The “how
to’s” of ABA: top 10 strategies for parents and professionals to use today
BECKY WARD, Clinical Research Coordinator for the Autism Spectrum Disorders –
Canadian-American Research Consortium - Unraveling the mystery of autism:
from genetics to early detection and prevention
pre-register to attend. PARENTS/STUDENTS:
$150.00, PROFESSIONALS: $190.00
Registration deadline: March 22, 2002 (A cancellation fee will apply)
For more information, or to register, contact New Haven at 416.259.4445
416.259.2023 or email at NHLearning@aol.com
The Autism Society Ontario York Region
Chapter would like to thank IBM Canada Limited
for their generous donation of a computer.
IBM is a
corporate supporter of the ASO York Region
Halton Chapter to present ABA Training Workshop for Home-Based Programs!
March 8th & 9th or
April 20th & 21st 9:00 a.m. to 5:30 p.m.
This is an intensive 2-day
training workshop that will give you the fundamentals of a home-based ABA
program. This workshop emphasizes a
positive and systematic approach to teaching communication, play, social and
self -help skills using Applied Behaviour
Analysis. We will attempt to teach you how to implement this approach
using creativity and flexibility, capitalizing on the resources available to
each individual child and family.
Oakland's Regional Centre,
53 Bond Street, Oakville - 3rd
Floor - Library
Register Early - Limited
Enrolment - The first 30
registrations for each of the above dates will be confirmed by telephone
SORRY NO TELEPHONE
$150.00 per person fee,
Lunch included served b Please
submit registration Autism Society /Halton Chapter
173 Lakeshore Road, West,
Oakville, Ontario L6K 1E7
Fax: 905 689-2474
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Volume 1; Issue 1
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
Volume 3; Issue 4 EVERYDAY HEROES
Volume 4; Issue 1 DE-MYSTIFYING THE GFCF DIET
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CONTAINS PRACTICAL INFORMATION BY PARENTS FOR PARENTS Available on request, e-mail email@example.com 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.
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