THE
E-NEWS
THE CURE CONTROVERSY
Volume
6; Issue 4
August
15, 2002
A topic that arises from
time to time on message boards, chat rooms and now the E-News is the thread we
like to call “The Cure Controversy”. It
is not our intention for this issue of the E-News to be controversial, but often
this subject seems to touch a nerve. We
are offering this theme today, not to cause trouble, but to help look at
autism/PDD in a different way.
The question is put like
this:
“If
you were offered a cure for your child’s autism/PDD and any co-existing
disorders,
would you administer it? Our
‘cure’ has been proven to be totally safe with no side effects.
Please tell us your feelings on
this.”
You
might think everyone would jump at the chance, after all, look at the hoopla
over secretin a few years back. Black
marketers were offering it to anxious parents at $1,000 a pop! For our question, surprisingly enough, not everyone answered
yes (although there were a few conditional yeses).
Parents have a variety of responses and the reasoning in each of them is
valid and sincere.
There
are no right or wrong answers to this question.
Your response may even be different on Monday than it was on Friday. One
thing shines throughout all of the feedback – our love for our children!
There
is no disrespect meant to those on the spectrum reading this issue.
The interesting thing about this question is that it leads us to think of
autism in a way we may not have previously.
We are hoping to create a
movement in the mind and spirit towards peace and acceptance. It is our
hope to help ease pain and forge a path towards a positive future easing the
frustration along the way.
This
issue has been entirely written by parents of children with autism/PDD.
Their feelings are sincere, and some of them are raw. Please keep in mind they are speaking for themselves only and
no one is trying to push their views on anyone else. J
My deepest thanks go out to these awesome parents who opened their souls
for us to have a peek! Special
thanks to Becca who helped me shape this offering by lending me her words.
Bee
Cool,
Liz
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TABLE OF CONTENTS |
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A MOTHER’S THOUGHTS ON THE RELATIONSHIP BETWEEN AUTISM AND HER DAUGHTER’S CORE PERSONALITY An Original Piece by Becca |
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TO START US OFF…CONTRIBUTED
BY “Becca”
Seemed
an appropriate time to post Jim Sinclair's piece "Don't Mourn for
Us" in conjunction with the "cure/don't cure posts." Keep in
mind that Jim is a high functioning Autistic and as such sees the world through
this perspective.
As such he can also have difficulties understanding that the world might be
different for a low functioning individual or a parent of a child in who
suffers. His words however are eloquent and his insight amazing and his voice
carries a wisdom with it that cries to be heard.
Anyone one with pieces representing an opposite perspective I encourage you to
post these also. We need to see the world through as many perspectives as
possible to be the best that we can be...
[This
article was published in the "Our Voice," the newsletter of Autism
Network International (http://ani.autistics.org/), Volume
1, Number 3, 1993. It is an outline of the presentation I gave at the 1993
International Conference on Autism in Toronto, and is addressed primarily to
parents.] J.S.
Parents often report that learning their child is autistic was the most
traumatic thing that ever happened to them. Non-autistic people see autism as a
great tragedy, and parents experience continuing disappointment and grief at all
stages of the child's and family's life cycle.
But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person.
Some
amount of grief is natural as parents adjust to the fact that an event and a
relationship they've been looking forward to isn't going to materialize. But
this grief over a fantasized normal child needs to be separated from the
parents' perceptions of the child they do have: the autistic child who needs the
support of adult caretakers and who can form very meaningful relationships with
those caretakers if given the opportunity. Continuing focus on the child's
autism as a source of grief is damaging for both the parents and the child, and
precludes the development of an accepting and authentic relationship between
them. For their own sake and for the sake of their children, I urge parents to
make radical changes in their perceptions of what autism means.
I
invite you to look at our autism, and look at your grief, from our perspective. Please
click here.
THE
QUESTION:
“If
you were offered a cure for your child’s autism/PDD and any co-existing
disorders, would you administer it?
Our ‘cure’ has been proven to be totally safe with no side effects.
Please tell us
your feelings on this.”
“B”
dad to “K” aged 7
If
K would wake up in the morning leading a "normal" life, talking to me,
saying his name and behaving like other 7 year olds i would do it in an instant.
I would continue to help children with special needs any and every step of the
way, K's condition has opened my eyes to the problems and concerns other
children have.
It may sound selfish but that’s what i would do. I have people on the Internet
that I consider very dear friends and they are High Functioning and leading
happy and productive lives and I am not taking anything at all away from the
brilliant spirit each and every one of you radiates.
As for The Mourn post,
Again my friends on the Spectrum do not think for an instant that I would change
one iota of your lives even if I had the power, each and every one of you have
accomplished many brilliant things in your life and I am very proud of you. But
K’s situation is a little bit different from those with high-functioning
autism. He cannot function without
additional assistance and I also look at his brother, C would will one day have
to become his brother’s keeper if K does not become able to take care of
himself.
I admit I do not know how much the autism is a part of the K I love so much but
to help him and his family lead a happier life I would want him to be able to
talk and take care of himself.
“T”
mom to “R” age 9
I
like some of R’s quirks. Only thing I would like to have improved is his
flapping and his understanding and communication...other than that his busy
brain can stay. I’d miss his quirky imagination way too much.
It’s really a hard question to answer. If you could guarantee his personality
and silly quirks would stay then sure a cure would be great...personally I'm use
to the autistic stuff and don't really care either way if he's cured. I’d
probably wait till he could decide and follow his lead.
Hard question!
“J”
mom to “B” age 8
I'd
have to think about it cause I love B just the way he is and I’d be afraid of
him being a totally different person...would I know this person??? Would he
still be the (usually) same sweet kid with the million-dollar smile????
I'd love to gradually get rid of his autism...so we both could adjust to the
change...but a sudden overnight completely different kid.....I don't know...
“M”
mom to “B”
I
would wish B had more self-confidence and no issues that make him hurt (such as
his sensitivities to touch and smell and taste).
I love his brain -- the way he thinks and the way he comes up with the ideas he
does. For example -- he told his father that he wanted 6 dice so he could make
up different combinations. Guess who bought B the dice? He has a really neat way
of thinking.
If you had asked me this when he was 3 -- I would have said GIVE ME A CURE NOW
but now he has come so far -- I am very pleased with the way he is. And I look
forward to seeing him move up to the next step every day.
He has changed me so much -- I am such a different, better and stronger person
because of B. One day I hope he knows how much better he has made me as a
person.
And even if all of the traits disappeared tomorrow -- I would still spend my
days with the friends who have helped me, made me laugh when I wanted to cry and
visit every person I could on this board.
“L”
mom to “J” age 6 ½
I love my son so much. He is so cool and so interesting. He
is also sweet and even though he has difficult behaviors (like right now), I
feel very lucky to be his mom.
If he were to wake up tomorrow without the autism, developmental delays, seizure
disorders and anything else not yet detected, how would I feel? Definitely,
let's get rid of the seizures...they frighten me!
But would he be different? Would he lose the very J-ness that
makes him J? Gosh, this is something I've thought about and it really gives me
pause.
I have to sort out also whether it threatens my role. Boy, how honest is that?
If J was 'cured' tomorrow, would I be shunned from this wonderful community and
how would I feel about that? Does J's autism define me as a human being?
Okay, I think I have the answers. I'd like something that 'cured' modules of my
son's challenges.
For tomorrow, I'd like the following 'cures':
1. Seizures
2. Incontinence
3. Fecal Smearing (ugh)
4. Uncontrollable (and indefinable) outbursts of tantrums
5. Anything that may be causing him misery or pain
I would like to gradually continue to work on the other stuff: social,
expressive/receptive language etc. A sudden 'cure' might be a huge shock to the
system. If we can get rid of some of the big stuff, the gradual acquisition of
the skills that will help him lead an easier life might be gentler on J and
myself!
“C”
mom to “T” age 6
Everyone
here has pretty much captured the thoughts and sentiments of both my husband and
myself. When this diagnosis was made a few weeks ago, the doctor said "Now,
there really is no cure for this...." Once we were home, we realized that
we didn't really want a cure. Treatment, yes. Therapy to learn how to handle and
deal with everything, yes. But get rid of it? Toughie, but like others have
already stated, that would mean getting rid of a part of HIM - a part of his
soul and absolute way of being. And I totally agree with the question raised of
"What would that do to MY role"....as parents, we realize very early
on that WE are a big part of their life force, and when something becomes
altered, it alters EVERYTHING - not just with that person, but with the entire
family structure.
Seeing as how everyone that has answered so far has pretty much said that they
would not take an overnight "cure", I am curious to hear the other end
of the discussion and see what makes up a yes answer! =)
“K” mom to “J” age 9
I
would definitely love to wake up and my son be cured. In my situation Autism is
such a painful thing. Every child is different, but my child is gonna be 9 and
things are just not getting any better in a way. He is very hyper. Still puts
himself in dangerous situations. He has to be held by his Mommy or Daddy's hand
constantly.
Everyone has their own burdens to carry, my is too heavy. I would definitely
want him cured. Not only for myself but for his only brother, who puts up with
alot from him.
My life is constant worry. Never ever goes away. Sure, my son is the funniest
kid you would ever want to meet. But it was real funny when he was younger, but
now that he is getting older its not so funny anymore.
Don’t get me wrong; I love my son with all my heart. But I am also his mother,
to protect him from harm, all decisions come from me.
Don’t mean to sound so bitter, but this is how I feel. I guess you asked the
question at a wrong time in my life. LOL. We have tried at least 10 different
meds, nothing seems to help.
My son can read and write, add and subtract. But......the fear of
him running somewhere where he doesn’t belong really scares me to death. One
of these days he is gonna seriously get hurt. Maybe he will pick up a poisonous
spider or open a door with something very dangerous on the other side. His
curiosity really scares me. Never mind the fact that he will be hitting puberty
in a couple of years. Oh geeze, I could go on and on...LOL
If I were to answer this question a couple of years ago, it might be different,
but reality has set in and this "autism" is really not going anywhere.
Hopefully I didn’t offend anyone or make them depressed, but this is my
opinion, also my reality having a autistic child.
“J”
mom to “N” age 5
I
think he would only be better - and quieter! - if "cured". What makes
N "N" would still be there and the best part is more
people would see it.
“L”
If
it were totally safe, with no side effects or long-term effects I'd take it and
I'm not ashamed to say so. If my child had cancer and there were a cure I would
take it. If my child had food intolerances and there was a cure (not just things
to make it less worse) I would take it. If my child were a quadriplegic and
there was a cure I'd take it.
I don't think my son would be any less special without his autistic features.
It's not a matter of me wanting to have a "perfect" child or me
thinking he is a burden or not good enough as he is (because he IS) but me
wanting to give my son all the opportunities in life I possibly can. Being NT
(neuro-typical or typically developing) will give him more opportunities in all
areas - social, emotional, work, school, etc.
“B” mom to “A”
You're
right this is a tough question. I often ask myself would I be the same person
today if A didn't have autism? Would I be as compassionate, courageous enough,
or have had the experiences that I've had such as meeting all the wonderful
people that have touched our lives, such as A's speech therapist, ABA therapist,
OT therapist, you guys, all the friends I've made in numerous boards, would I
have a website that touches so many people, maybe not. It's a tough price to
pay, in a perfect world we would be able to choose what we want and what we
don't want for our child but unfortunately life doesn't work out that way. Maybe
A would be the same child and would be able to look me in the eye and tell me
how his school day went or point and tell me "look at the beautiful
butterfly." Who knows? But if I had to make a choice right now I think it
would be yes, a cure.
My biggest fear is his future and like K said, every decision that regards him
me and my husband have to make. We can't leave him unattended at all and what's
his future going to be like? Will his brother care for him or will we have to
place him in a residential facility when he gets older? Although life brings
many uncertainties, I’d choose a cure.
“K”
mom to “B” age 2 ½
I
would take that instant cure. Keep in mind that B is not yet even 3 years old. I
don't feel yet that autism is a part of who he is - I still feel that it is
something he is trapped behind. I absolutely hate what we are going through. In
fact, if I were offered a different disability (paralysis, blindness, etc) I
would even take that over autism. I think anything would be easier to deal with
than this!
I realize that these feelings are coloured by the fact that B is so young, and
the diagnosis only 7 months old. But these are definitely my feelings. Only less
than a week ago, I dreamed B had a brain tumor. He went through a terrible
operation, then woke up after surgery completely non-autistic. Goes to show you
how I feel about it, doesn't it?
It has been really interesting to get to you know all of you in this way, thanks
everyone for sharing.
“L”
mom to “M” and “D”
Honestly,
I never even thought of a cure and it's affects on my life. Each day when I wake
up, I view raising my boys as a true "calling", even though it was not
something I chose to do. Yes, I wanted children, and I wanted to be a mother.
However, I didn't chose to be the Mom of 2 Autistic Boys. I kind of look at it
this way: When your children are born you get to know them the first few months,
and after awhile you bond and they become a very BIG part of your life. You
notice all their little traits, and nuances. You see them for who they are, not
what you expected them to be before they were born. I see both of my children
for who and what they are, and I wouldn't have it any other way. Is there a cure
for the joy we feel when our children accomplish little feats?? Is there a cure
for when our child breaks through their little world and gives us a smile or a
hug???? I guess what I'm trying to say is why would you want or need a cure for
something that is intrinsically the unique essence of a person??? I for one
wouldn't want to erase or take away any of that even if I could right now. I
would however like to see my children grow and blossom ,be physically healthy,
become independent, and know how to love just like any other person does in the
world, with or without disabilities.
My children have opened my heart and caused it to grow to a size I could never
have imagined possible. If a child, or any person could have such an affect on
anyone I'd say they are a benefit to society, instead of someone that we'd want
to change. So, no, I wouldn't want a cure, but I would want the world to open
their arms and accept my boys just as they are. That would make me much more
happy!!
“G” Mom to 6
kids
Our family deals with so many hereditary medical issues, and none of them have
an "instant cure." I have a hard time imagining a cure for anything,
really. I have just gotten used to the fact that life is a ride, and we may as
well enjoy the good stuff that comes along, no matter what the hard stuff is.
My daughter's surgery Friday is supposed to be a "cure" for
GERD/reflux. I am still struggling to imagine what she could be like without the
chronic symptoms she has had all her life. I know I will cry with joy if the
cure really works, and sigh and say, "oh well" if it doesn't.
A cure for autism? I would love a cure for social delays, for stimming, for
aggression and regression, and one for the ignorance that other people show
towards children with disabilities.
I would NOT, however, want a cure for my sons' gentle personalities, their
unique perspective on the world, or their ingenious ways of learning to deal
with things they cannot comprehend. They are sweet, intelligent, interesting
people, and that would be a shame to miss out on.
G, who is: pessimistic about a "cure," but optimistic about the future
for my sons
“L.
A.” mom to “C” aged 3.9
I’ve
given a lot of thought to this question as I read all the previous messages in this
thread.
I am very lucky in the fact that C, who will be 4 in October, has high
functioning ASD. He said "mommy "and "daddy" for the first
time back in February. They were the sweetest words I had ever heard.
He has been progressing in leaps and bounds since then.
In regards to whether I'd cure him, I don't think so. Maybe I'm being selfish in a way but C makes everything seem
wonderful and brand new. Every step
he takes is exciting and it reminds me to be thankful for the small miracles
that happen every day. C and his autism forces our family to slow down and
appreciate the wonder that he sees in his world. It's also a good reminder to my 2 older sons to be tolerant
and they are fiercely protective of him.
I'll keep my ray of sunshine just as he is.
|
A
MOTHER’S THOUGHTS ON THE RELATIONSHIP BETWEEN AUTISM AND HER
DAUGHTER’S CORE PERSONALITY An
Original Piece by Becca I
watched a documentary featuring Hannah, a young Autistic child involved
in a program of ABA therapy. I
found myself mesmerized, drawn in not so much by the therapy or family
issues but by the moments frozen in time of Hannah happy within her
Autistic world. Triggered
in me were memories of not so long ago. Something
about Hannah… so precious and sweet reminded me of my youngest
daughter at an earlier age. Her
eyes, her mannerisms, and the expression of her Autistic self stirred
within me thoughts of a time I had taken for granted… that slipped
away. In my heart and soul
I missed my sweet daughter that was. Tears came for this is a secret I
rarely tell lest I offend someone in its telling. And I wonder did I
ever really tell anyone how hard it was to watch her change… so
unique, so precious, and so special in her Autistic world as she was. At
first I was hesitant about sharing this story but so often it has
pressed upon my mind, perhaps if I try hard enough I can find the right
words to do my daughter’s story justice.
Fair warning though mourning the loss of my daughter’s Autism
may not be what you expected. You
see once upon a time my little one was far more Autistic then she is
now. It was as if she lived within a bubble world.
Here she was safe, with her own self-made rules, laws and reasons
for the world being as it is. In her bubble she knew naught of the pain and sorrow or evil
ways of the world… nor that the world beyond could ever bring her
harm. The gift of her lack of understanding and comprehension made this
so. At
home I knew exactly what she wanted. What made her happy and what she
expected to do when and where and how. I would put on the same video
that she had memorized before... say Winnie the Pooh... she would watch
it gladly and then act it out word for word. We became part of the movie
as she came chattering at our knees and ending by calling us say Rabbit,
or Tigger or Pooh. She would talk to the parking lot at the grocery
story about it too.
This was her world… repetitive, predictable, and ordered.
And in this she too helped me to appreciate this calm.
Removed from the world of chaos we both were. I'd
take her for walks. Fearlessly she would poke her fingers into dog’s
eyes. That beautiful precious lack of fear... that terrifying lack of
fear that made us fight, both of us in tears all the way home from
kindergarten every day.
For unable to comprehend the meaning of being run over, being
squashed or dead she had no fear of cars.
The only thing that saved us was a fixation with white men and
orange hands on the pedestrian lights.
The
meaning of what they wanted became fixed in my daughter’s mind.
Something the school crossing patrol could not accomplish.
So we went 20 minutes out of our way just to find a crossing
light.
Those walks were so precious.
It was here I learned that she was stimulated to think and speak
when walking.
Wonderful observations she had and even the beginning of
questions.
I
cared not that the questions were always the same.
I understood her need for security and encouraged the repetition
in everything we did. I felt strongly that by meeting her in her world
she could feel safe enough with the consistency that she could begin to
move beyond.
I saw in her a child content in the sameness of the rocks, the
trees, the leaves, and a mother attempting to understand this need for
sameness and learn her speech, her language and her Autistic ways.
It was here I found her inner core of peace and a meeting of our
hearts and minds. These
walks gifts born of her lack of fear, which was in itself a precious
treasure of its own.
I feel the memory of laughter bubble for this lack of fear she
had brought to us many a joy.
Still present as she began to emerge she said of her older
sister’s fear of thunder, “I will go outside and beat the thunder
up.”
First signs of sisterly love… I saw the seeds of a miracle. But
that lack of fear did dissipated and vanished along with so much more. Now
I remember her far younger.
She could no longer walk with me, as she could not stand to hold
my hand. I pulled her in a wagon where she sat looking at all the
wonders of the world. Here she fell in love with flowers and rocks and
pinecones, which I thought wasn’t so bad till I was expected to pick
them all up. We
lived in a gentle world.
It was a world with no time or expectations. No demands that she
develop any faster than she was... no expectations that she be anything
other than who she was.
Nor any fear we had that she just like myself would develop as
nature intended. This was a happy world of perfect acceptance. Not
shattered yet by infringing schedules, doctor's dire predictions,
teacher's pressures, timetables or fear of time pressing on with no
progress. Our fairytale world filled with Dr. Seuss books neatly
stacked, dozens of card decks, the same puzzles everyday, millions of
Potato heads drawn in exactly the same and dozens of Lego pieces neatly
lying in a row. This
was the world when filled with gratitude I was amazed not only at her
neat and tidiness but at the fact that after four children this was the
first who knew exactly where everything belonged.
I was lucky and blessed to have such a child as she.
And although she was late walking and talking so too had I been.
One day the world would know as her father and I had always
known… that this child with the big eyes searching eyes was the most
intelligent of all our four children. But
one day as time went on her father and I felt inside that creeping fear.
We knew she was developmentally delayed and I knew too well what
her symptoms were a reflection of an Autistic disorder.
So I designed an intensive program and worked with her all day
and much of the evening. She began to emerge so innocent and lacking in
comprehension. Her happiness abundant still except of course for the
times that something went wrong.
But when these times of intense negativity were ended she did not
seem to remember they had ever been.
Moment to moment she lived and even though her unhappiness with
the inconsistency of the world came more often they still did not haunt
her contaminating other moments of her life. Yes
she could be very grouchy, but she could make the whole family
laugh…
and think.
She saw the world through different eyes.
Her thoughts expressed through seeing differently could be
insightful, helpful, or uplifting.
For this is a gift given to those who see differently.
The Neurologically atypical are needed so much for innovation and
progress as typical minds are more likely to see what has worked but not
necessarily what will.
It still amazes me though how one of my daughter’s comments can
shed new light on a situation without her even intending on being
helpful.
It is simply because her brain can see what mine cannot.
She is my daughter with the different eyes. I
remember how much she needed me, as if she and I were one myself vital
appendage.
At first she did not need me but gradually she decided that I was
the authority on everything.
With relatives in the middle of a sentence she would look over
for the answer... exactly what pronoun is my Auntie anyways? For
strangers she treated me as if I was an interpreter.
What an ego rush with an Auditory Processing Disorder and
Expressive Language Problems of my own.
But heaven help me were I not available or contradicted some idea
she still held firmly in her brain.
My, did I get a lecture the day I told her that awful rule that
the plural of goose is geese.
She had wanted to show off her knowledge of added ‘s to words
verbally.
And I had to correct her.
This correction was not gently taken as her entire world
threatened collapse. But
she had no choice when I took this treasure from her thrusting her into
a world of awareness she was ill prepared for.
This I fought for as a gift of love but truly the driving passion
came from a thirst inside my own soul.
And in so doing her personality was altered.
As she became less Autistic she became less of who she had been.
This included elements of my daughter both wonderful and
precious. Elements of my
daughter born of an autistic mind.
In this I lost a piece of my heart.
I grieve for I have never felt completely comfortable for taking
from my own daughter due to my own desires. But
right now she comes upon me throwing her arm full wide.
Now she kisses me wet upon my cheek.
Burrowing amongst the covers she finds daddy. To him too she gives a big smack. Hmmmm at least this precious little girl doesn't lick us
anymore as she once learned from the cats.
A few years back she had a moderate problem it seems with
identifying which species she originated from.
Don’t know how she could have stood those cat hairs all over
her tongue. But throwing a
ball when she thought she was related to a dog was a bit more fun. I
think perhaps what was is precious, what exists now is different yet
special as well, … and what lies in the future is undiscovered and
mysterious in its hope. And our daughter is our daughter... she is right the way she is.... |
IN
CONCLUSION….
“A Cure?
No way!
I am not sick, nor do I have a mental illness! Yes, I have many difficulties
that I have to deal with, but I also experience incredible joy and success. I
wouldn't be the same person if I was a neuro-typical, nor do I think that I
necessarily want to be that person. I like who I am, although I do wish that
society would allow people to be who they are, even if it is different than
them. I believe that, in heaven, we will one day rejoice with many different
brothers & sisters - even the ones that are different.
I would prefer that people wouldn't pray for me to be "healed",
either. When I hear this, I hear, "I will be praying that you will become
a different person." I am a whole person. Autism is a key part of who I
am. Asking me to want to give up that part would be like me asking you to give
up a sense of humor! Without the autism, I would be less whole, not
more whole.”
The rest of this
website can be found here
Author Unknown
Two frogs fell into a deep cream bowl.
One was an optimistic soul.
But the other took the gloomy view.
"We'll drown," he lamented without much ado,
and with a last despairing cry,
he flung up his legs and said "Goodbye."
Quote the other frog with a steadfast grin,
"I can't get out but I won't give in,
I'll just swim around till my strength is spent,
then I'll die the more content."
Bravely he swam to work his scheme,
and his struggles began to churn the cream.
The more he swam, his legs a flutter,
the more the cream turned into butter.
On top of the butter at last he stopped,
and out of the bowl he gaily hopped.
What is the moral? It's easily found...
If you can't hop out, keep swimming around!