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Here you
will find some narratives, poems, and stories written by parents of children
with special needs. They were taken from the following sources:
Poems, Stories: The Autistic
Spectrum:
http://stevens_mom.tripod.com/id7.html
Children’s Tumor Foundation:
http://www.ctf.org/cgi-bin/bb/ultimatebb.cgi?ubb=get_topic;f=2;t=002477
TimesOnline:
http://timesonline.typepad.com/india_knight/reader_stories/index.html
1. To You,
My Sisters
By Maureen K.
Higgins
http://stevens_mom.tripod.com/id7.html
Many of you I have never even met face to face, but I’ve searched you out every
day. I’ve looked for you on the internet, on playgrounds and in grocery stores.
I’ve become an expert at identifying you. You are well worn. You are stronger
than you ever wanted to be. Your words ring experience, experience you culled
with your very heart and soul. You are compassionate beyond the expectations of
this world. You are my “sisters.”
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We
are special. Just like any other sorority, we were chosen to be members. Some of
us were invited to join immediately, some not for months or even years. Some of
us even tried to refuse membership, but to no avail.
We were initiated in neurologist’s offices and NICU units, in obstetrician’s
offices, in emergency rooms, and during ultrasounds. We were initiated with
somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI
films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant,
or we had just given birth, or we were nursing our newborn, or we were playing
with our toddler. Yes, one minute everything was fine. Then, whether it happened
in an instant, as it often does, or over the course of a few weeks or months,
our entire lives changed. Something wasn’t quite right. Then we found ourselves
mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children’s special
needs. Some of our children ungergo chemotherapy. Some need respirators and
ventilators. Some are unable to talk, some are unable to walk. Some eat through
feeding tubes. Some live in a different world. We do not discriminate against
those mothers whose children’s needs are not as “special” as our child’s. We
have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we
could find. We know “the” specialists in the field. We know “the” neurologists,
“the” hospitals, “the” wonder drugs, “the” treatments. We know “the” tests that
need to be done, we know “the” degenerative and progressive diseases and we hold
our breath while our children are tested for them. Without formal education, we
could become board certified in neurology, endocrinology, and physiatry.
We have taken on our insurance companies and school boards to get what our
children need to survive, and to flourish. We have prevailed upon the State to
include augmentative communication devices in special education classes and
mainstream schools for our children with cerebral palsy. We have labored to
prove to insurance companies the medical necessity of gait trainers and other
adaptive equipment for our children with spinal cord defects. We have sued
municipalities to have our children properly classified so they could receive
education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking
away from it. We have tolerated scorn in supermarkets during “tantrums” and
gritted our teeth while discipline was advocated by the person behind us on
line. We have tolerated inane suggestions and home remedies from well-meaning
strangers. We have tolerated mothers of children without special needs
complaining about chicken pox and ear infections. We have learned that many of
our closest friends can’t understand what it’s like to be in our sorority, and
don’t even want to try.
We have our own personal copies of Emily Perl Kingsley’s “A Trip To Holland” and
Erma Bombeck’s “The Special Mother.” We keep them by our bedside and read and
reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically
handicapped children to the neighbors’ front doors on Halloween, and we have
found ways to help our deaf children form the words, “trick or treat.” We have
accepted that our children with sensory dysfunction will never wear velvet or
lace on Christmas. We have painted a canvas of lights and a blazing yule log
with our words for our blind children. We have pureed turkey on Thanksgiving. We
have bought white chocolate bunnies for Easter. And all the while, we have tried
to create a festive atmosphere for the rest of our family.
We’ve gotten up every morning since our journey began wondering how we’d make it
through another day, and gone to bed every evening not sure how we did it.
We’ve mourned the fact that we never got to relax and sip red wine in Italy.
We’ve mourned the fact that our trip to Holland has required much more baggage
than we ever imagined when we first visited the travel agent. And we’ve mourned
because we left for the airport without most of the things we needed for the
trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for
our special children and our belief in all that they will achieve in life knows
no bounds. We dream of them scoring touchdowns and extra points and home runs.
We visualize them running sprints and marathons. We dream of them planting
vegetable seeds, riding horses and chopping down trees. We hear their angelic
voices singing Christmas carols. We see their palettes smeared with watercolors,
and their fingers flying over ivory keys in a concert hall. We are amazed at the
grace of their pirouettes. We never, never stop believing in all they will
accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight
to their little hands as together, we special mothers and our special children,
reach for the stars
2.
A Trip
To Holland
By Emily Perl Kingsley
http://www.ctf.org/cgi-bin/bb/ultimatebb.cgi?ubb=get_topic;f=2;t=002477
I am often asked to describe the experience of raising a child with a disability
-- to try to help people who have not shared that unique experience to
understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip to
Italy. You buy a bunch of guide books and make your wonderful plans... the
Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in
Italian. It's all very exciting. After several months of eager anticipation, the
day finally arrives. You pack your bags and off you go. Several hours later, the
plane lands. The stewardess comes in and says, "Welcome to Holland!" "Holland?"
you say. "What do you mean, Holland? I signed up for Italy. I'm supposed to be
in Italy. All my life I've dreamed of going to Italy." But there's been a change
in the flight plan. They've landed in Holland and there you must stay. The
important thing is that they haven't taken you to a horrible, disgusting, filthy
place full of pestilence, famine, and disease. It's just a different place. So,
you must go out and buy new guidebooks. And you must learn a whole new language.
And you will meet a whole new group of people you would never have met. It's
just a different place. It's slower paced than Italy, less flashy than Italy.
But after you've been there for a while and you catch your breath, you look
around. You begin to notice that Holland has windmills. Holland has tulips. And
Holland even has Rembrandts. But everyone you know is busy coming and going from
Italy, and they're all bragging about what a wonderful time they had there. And
for the rest of your life you will say, " Yes, that's where I was supposed to
go. That's what I had planned." And the pain of that experience will never,
ever, ever, go away. The loss of that dream is a very significant loss. But if
you spend your life mourning the fact that you didn't get to Italy, you may
never be free to enjoy the very special, the very lovely things about Holland.
3.
Celebrating
Holland- I'm Home
By Cathy Anthony
http://www.ctf.org/cgi-bin/bb/ultimatebb.cgi?ubb=get_topic;f=2;t=002477
(my follow-up to the original \Welcome to Holland\ by Emily Perl Kingsley)
I have been in Holland for over a decade now. It has become home. I have had
time to catch my breath, to settle and adjust, to accept something different
than I'd planned.I reflect back on those years of past when I had first landed
in Holland. I remember clearly my shock, my fear, my anger, the pain and
uncertainty. Inthose first few years, I tried to get back to Italy as planned,
but Holland was where I was to stay. Today, I can say how far I have come on
this unexpected journey. I have learned so much more. But, this too has been a
journey of time.
I worked hard. I bought new guidebooks. I learned a new language and I slowly
found my way around this new land. I have met others whose plans had changed
like mine, and who could share my experience. We supported one another and some
have become very special friends.
Some of these fellow travelers had been in Holland longer than I and were
seasoned guides, assisting me along the way. Many have encouraged me. Many have
taught me to open my eyes to the wonder and gifts to behold in this new land. I
have discovered a community of caring. Holland wasn't so bad.
I think that Holland is used to wayward travelers like me and grew to become a
land of hospitality, reaching out to welcome, to assist and to support newcomers
like me in this new land. Over the years, I've wondered what life would have
been like if I'd landed in Italy as planned. Would life have been easier? Would
it have been as rewarding? Would I have learned some of the important lessons I
hold today?
Sure, this journey has been more challenging and at times I would (and still do)
stomp my feet and cry out in frustration and protest. And, yes, Holland is
slower paced than Italy and less flashy than Italy, but this too has been an
unexpected gift. I have learned to slow down in ways too and look closer at
things, with a new appreciation for the remarkable beauty of Holland with its
tulips, windmills and Rembrandts.
I have come to love Holland and call it Home.
I have become a world traveler and discovered that it doesn't matter where you
land. What's more important is what you make of your journey and how you see and
enjoy the very special, the very lovely, things that Holland, or any land, has
to offer.
Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful,
for this destination has been richer than I could have imagined
4.
Trip to
Holland? Not us. A Little ‘Musing’
by Jennifer Armerding
http://www.ctf.org/cgi-bin/bb/ultimatebb.cgi?ubb=get_topic;f=2;t=002477
It seems every parent with a child with special needs has read the little story
equating having a child with a disability to an overseas trip. In this analogy
the parents having a child assume they are going to Italy, like every other
parent they know, and, lo and behold, they discover that they have gone to
Holland instead. A slower, equally enjoyable place, but a new language must be
learned, new activities engaged in, and with the knowledge that they were
supposed to go to Italy, but never quite made it, always in the backs of their
minds. Well, last night I came to a realization that my experience hasn’t been
quite that. I love Holland (metaphorically speaking). Always have. I like life a
little slower than some. However, I just discovered that my kids and I are not
IN Holland! A mistake has been made. We are definitely Dutch. No argument there.
But we are in Italy. And we are there to stay, like it or not.
Let me explain.
My children were born with disabilities. I was blessed to be their
foster/adoptive mother from the time they were each about two years old. Now
they are 8 and 11. I love the ‘Holland’ story, and have read it on numerous
occasions. However, last night I came home from a Halloween carnival in tears as
it sunk in once again that our family just does not fit in when we go out in
society. Usually we are in quite a protected environment. Family that loves and
knows us. Friends who’s families are also dealing with disabilities. The world
of therapies, doctors, equipment issues. Sometimes I think we ‘fit in’
beautifully. Then we go out. I laid in bed thinking back to that lovely Holland
story, and somehow it did not fit, so I made up a new story, that is closer to
what I perceive as the experience of many families with children with
disabilities.
Hey! You are having a baby! Sure enough, you are told by the doctors that you
have a baby, but apparently the baby is Dutch, rather than Italian, which is
what you were expecting. (Let’s make the silly assumption that nationality
brings with it different care needs!) Woah! Now you need to learn to care for a
Dutch baby. New lingo, new physical care, etc. But… you are IN Italy. Your
friends are still Italian. Your grocery store is still Italian. Your church is
still Italian. And most of them haven’t met anybody Dutch before. They are
intrigued by your child. However, Dutch babies are pretty adorable, in general,
like any other baby. You also find that there are a league of professional
people swarming around whose entire job is to help your baby adapt to become
more Italian as he grows. You meet other families who ended up with Dutch babies
and live in Italy. You all hold out hope that your babies will become more
Italian as time goes on. As your baby grows, you read magazine articles and see
television features about babies ‘just like yours’ who beat the odds and became
Italian! Yours doesn’t.
He isn’t a baby anymore, and the former swarm of professionals becomes a few
here and there. People aren’t saying it, but you get the feeling they don’t
think there is much chance he will gain too many Italian skills as time goes on.
He is slower, can’t seem to learn the language, looks different, etc. Ok, you
tell yourself! Dutch is good! This kid is the greatest! People from Italy and
Holland can coexist! We will call it inclusion! Then you learn that inclusion
means that the Dutch kids have to be able to do what the Italian kids are doing
or they are deemed ‘inappropriate’. Some of your friends’ Dutch kids manage to
do this. Some of them don’t. Apparently they belong with other Dutch kids in a
separate place. Italian kids will visit them from time to time, maybe reading to
them or playing games, and then they will leave. Other kids have ‘friends’. Your
kid has ‘helpers’. The Italian kids might even earn points and rewards for
volunteering to do this!
Your child is now not a ‘little kid’ anymore. You and he walk down the street in
your wooden shoes and realize all of a sudden that everyone rushing past you is
wearing the latest styles; leather, silk, designer clothes. They are talking
madly on their cel phones. They are laughing and drinking their espressos in
sidewalk cafes. They are speaking Italian, which you used to know. In fact you
were fluent. Now you wonder what happened. Dutch is now your language. The
Italian seems…. foreign somehow. When did YOU become Dutch? Well, the hard part
is that, far from being an adorable baby, your child is now a challenge for
Italian people to accept. Unless they know other Dutch children or have known
you for a while, it is hard for them to know what to say to you, how to treat
your child. If they invited your child to a birthday party, for example, what
would they do with him? They only speak Italian. The games will all be ones
Italian kids play. So they don’t invite him. The Italians are big hearted, warm
people, in general, but still, you are a foreigner. Other kids stare and
sometimes even worry that they might become Dutch if they get too close. So they
don’t. You stand in a crowded hall with your wonderful, sweet child with a
10-foot parametre of empty space around you, and that is when it hits you.
We are not in Holland. We are never going to Holland. This is it
5. WELCOME
TO BEIRUT
© Susan F. Rzucidlo
(Beginner's Guide to Autism)
http://stevens_mom.tripod.com/id7.html
"I am
often asked to describe the experience of raising a child with autism-to try and
help people who have not shared in that unique experience to understand it, to
imagine how it would feel. It's like this.."
There
you are, happy in your life, one or two little ones at your feet. Life is
complete and good. One of the children is a little different than the other but
of course, he's like your in-laws, and you did marry into the family. It can't
be all that bad. One day someone comes up from behind you and throws a black bag
over your head. They start kicking you in the stomach and trying to tear your
heart out. You are terrified, kicking and screaming you struggle to get away but
there are too many of them, they overpower you and stuff you into a trunk of a
car. Bruised and dazed, you don't know where you are. What's going to happen to
you? Will you live through this? This is the day you get the diagnosis. "YOUR
CHILD HAS AUTISM"!
There
you are in Beirut, dropped in the middle of a war. You don't know the language
and you don't know what is going on. Bombs are dropping "Life long diagnosis"
and "Neurologically impaired". Bullets whiz by "refrigerator mother" " A good
smack is all HE needs to straighten up". Your adrenaline races as the clock
ticks away your child's chances for "recovery". You sure as heck didn't sign up
for this and want out NOW! God has over estimated your abilities.
Unfortunately, there is no one to send your resignation to. You've done
everything right in your life, well you tried, well, you weren't caught too
often. Hey! you've never even heard of autism before You look around and
everything looks the same, but different. Your family is the same, your child is
the same, but now he has a label and you have a case worker assigned to your
family. She'll call you soon. You feel like a lab rat dropped into a maze.
Just as
you start to get the first one figured out ( early intervention) they drop you
into a larger more complex one (school). Never to be out done, there is always
the medical intervention maze. That one is almost never completed. There is
always some new "miracle" drug out there. It helps some kids, will it help
yours? You will find some if the greatest folks in the world are doing the same
maze you are, maybe on another level but a special-ed maze just the same.
Tapping into those folks is a great life line to help you get through the day.
This really sucks but hey, there are still good times to be had. WARNING! You do
develop and odd
sense of humor. Every so often you get hit by a bullet or bomb not enough to
kill you, only enough to leave a gaping wound.
Your
child regresses for no apparent reason, and it feels like a kick in the stomach.
Some bully makes fun of your kid and your heart aches. You're excluded from
activities and functions because of your child and you cry. Your other children
are embarrassed to be around your disabled child and you sigh. You're insurance
company refuses to provide therapies for "chronic, life long conditions" and
your blood pressure goes up. Your arm aches from holding onto the phone with yet
another bureaucrat or doctor or therapist who holds the power to improve or
destroy the quality of your child's life with the stroke of a pen. You're
exhausted because your child doesn't sleep.
And
yet, hope springs eternal.
Yes
there is hope. There ARE new medications. There IS research going on. There are
interventions that help. Thank God for all those who fought so hard before you
came along. Your child will make progress. When he speaks for the first time,
maybe not until he is 8 yrs old, your heart will soar. You will know that you
have experienced a miracle and you will rejoice. The smallest improvement will
look like a huge leap to you. You will marvel at typical development and realize
how amazing it is. You will know sorrow like few others and yet you will know
joy above joy. You will meet dirty faced angels on playgrounds who are kind to
your child without being told to be.
There
will be a few nurses and doctors who treat your child with respect and who will
show you concern and love like few others. Knowing eyes will meet yours in
restaurants and malls, they'll understand, they are living through similar
times. For those people you will be forever grateful. Don't get me wrong. This
is war and its awful. There are no discharges and when you are gone someone else
will have to fight in your place.
But,
there are lulls in wars, times when the bullets aren't flying and bombs aren't
dropping. Flowers are seen and picked. Life long friendships are forged. You
share and odd kinship with people from all walks of life. Good times are had,
and because we know how bad the bad times are, the good times are even better.
Life is good but your life is never normal again, but hey, what fun is normal?
from
their guest(s) with Autism.
6. Someone I
Love
by: Lori Hickman
http://stevens_mom.tripod.com/id7.html
Someone I love relies on me in ways you will never nderstand.
Someone I love endures pain and challenges that break my heart and renew my
pirit at the same time.
Someone I love is unable to advocate for themselves for things that most of us
take for granted.
Someone I love will never have the opportunities that every child should have.
Someone I love will need unconditional love and support after I am gone - this
frightens me to the core.
Someone I love encounters pity, stereotyping responses, and prejudice at every
turn, because they look, act, and/or learn differently than others.
Someone I love has needs that require me to allow "outsiders" to have power and
input in areas that should be mine alone to meet.
Someone I love will continue to look to me for everything in life long after
other children are able to assume a place as part of the world.
Someone I love has needs that require more time and energy than I have to give.
Someone I love has needs that mean I am not able to meet basic needs of my own.
Someone I love has needs that have become the driving force behind major
decisions my family makes.
Someone I love has changed me in ways I will never be able to describe.
Someone I love has taught me about love and about the really important things in
life. . . .
"Living In My Skin: The Insider's View of Life With a Special Needs Child" ~
Copyright (c) 2000 by Communication Skill Builders, a Harcourt Health Sciences
Company.
7.
You have
Taught Me
By Anne Maclellan
March 1998
http://www.ctf.org/cgi-bin/bb/ultimatebb.cgi?ubb=get_topic;f=2;t=002477
You have
Taught Me
You have taught me patience
to rejoice in small gains which others take for granted.
You have taught me tolerance
to accept that your perspective is different
and deserves respect.
You have taught me courage
to fight for you when no one else will.
You have taught me endurance
to go on when I feel I can't any more.
You have taught me humility
to accept when I can't make things better
but can only be here for you.
You have taught me to love
at a deeper level than I ever thought possible.
8.
The
Woman in the Mirror......
By Cheryl Veenstra
February 2001
http://www.ctf.org/cgi-bin/bb/ultimatebb.cgi?ubb=get_topic;f=2;t=002477
I saw an unfamiliar face in the mirror today. She caught my eye as I rushed to
start the day. I hardly recognized this woman. What had changed in her eyes? She
was no longer young, naive and viewing the world through rose-tinted glasses.
What had caused the worry lines and thoughtful brow? How could she look so
fragile and weary, yet also determined and strong? Around some corner on the
road of life.......she had been shaken to the core of her very being.
There was a time when only tears and fears were reflected in those eyes. A
doctor's unexpected words, the future suddenly uncertain......gray, shadowy
images of the vague and scary concept of her child coming into the world as
"disabled". An incredible journey began that caught her by surprise and would
take her places she never thought she would go. The journey had been long at
times and she had shed tears of pain and tears of joy. She'd had hopes and
dreams dashed in the blink of an eye. She'd asked the question WHY? She'd had
friends fail her and not know what to say or how to help. She'd seen her child
suffer. She'd cried silent tears into her pillow at night. Tears of exhaustion
and fear. Tears of helplessness and longing. Tears of thankfulness and relief.
Tears that are choked back during the day, but are unleashed like floodwaters in
the safety of the night to wash away any walls being built up to protect her
heart. Nights of worry blurring into days of endless responsibility. But then
slowly, but surely, her broken heart begins to heal and mend.
The same pity she had once felt as she watched a mother hold her 'special child'
close was now looking back at her in the eyes of strangers. But a smile tugs at
her lips as she suddenly realizes that now she knew the secret! The hard-fought,
carefully guarded secret that was slowly revealed in the depths of her
heart.....but only after the tears and anguish of the first days and weeks of
this new life. The illusive truth that mothers of special children discover as
they take their first faltering steps down this
new path........It was okay. She and her child could survive, even thrive! It
was not as grueling and unforgiving a road as she had imagined. The fog,
confusion, despair and fear were being slowly replaced by peace, acceptance,
contentment, joy and gratitude. A mother's unique, unconditional love changes
the equation that may look hopeless and tough from those outside, looking in.
She will fight for, live for and die for her child. These special children
transform those around them into different people. Stronger people. Dare I say
it......deeper people. Long gone are the days when all they had to worry about
was where to vacation or what color mini-van to buy. They now struggle with life
and death medical issues. They must answer their child's questions about life's
unfairness and pain. What remaining strength and energy they have is spent
trying to make their
'family life' as normal and happy as possible.
A twinkle returns to the eyes of the woman in the mirror as she takes a deep
breath and remembers what she's been fighting for. How very worthwhile this
journey has been! This child is an incredible gift and it is a privilege to be
given the task of raising her. Her child is beautiful and perfect in her eyes.
She longs for her child to be seen by the world through this filter of love,
acceptance and potential. Could others take the time to see past this little
girl's slower steps to see the life and love reflected in her eyes? Would her
child be able to see herself through the filter of contentment that the woman
has journeyed so long to discover?
Hope was rekindled as the woman's eyes grew brighter. The future remained
uncertain, but the incredible, protective love she felt for her child threw a
warm blanket over the cold, dark storm clouds that used to threaten her very
soul. As she threw open the doors of her heart, she felt the warm sun on her
face and she beheld a beautiful rainbow of intense beauty and unmistakable
peace. Hope still comforts this woman who cries in the middle of the night. Love
gets her through each day. Faith takes her hand and leads her around each corner
and through each deep, dark valley. Peace soothes her heart as she relinquishes
control of their destiny to One wiser and all knowing. Joy brings laughter and
smiles to those tired eyes once again. Each day is recognized for the gift it
is.
I gave that woman a smile as I left her at the mirror today. I'll see her again
soon and I'm curious to see how she will continue to change and grow. She's not
the same young, carefree woman she used to be, but that is okay. I like who she
is becoming and I feel comfortable in her life. The sun is shining, the day is
brand new, my child is humming and God is so good!
9.
The
Silent, Constant Scream
By Pat Linkhorn, from FIN FACTS
http://www.ctf.org/cgi-bin/bb/ultimatebb.cgi?ubb=get_topic;f=2;t=002477
Most parents who have kids with disabilities usually seem to be fairly normal
people. Others, who don't have children with disabilities, sometimes tell us
what saints we must be to do all the things we do. Those of us who have been at
this for several years know we're not saints. We know how long it took us to get
to this place. This place where we appear to be capable and normal. Each ways.
Some accept it as God's way. Others accept it as a challenge to grow. Some are
angry. Some are sad. Most of us bounce back and forth between. We each cope in
different ways too. Some advocate. Some scream. Some hide behind humor. Some
silently accept. Some use their spouses as whipping boards. (As well as any
other person who happens to be close.) It's a mixed up, jumbled up mess whenever
you try to figure out what or how you are handling this. Most of us never
actually figure it out. We just continue to plod along, hurdling each new
obstacle as it arises. Never fully understanding exactly what it is that drives
us. Perhaps it's better that we don't know. Sometimes I have moments of
startling clarity. The other night while talking to a bunch of friends, someone
said that it was okay to scream. Most did their best jungle scream, but I
couldn't. The conversation had been about kids and Christmas. I shared with this
group that Christmas was the worst for me because my youngest couldn't see all
the lights. Somehow her blindness always seems worse during this season when the
full impact of blindness and all it entails really tears at my heart.
Suddenly I knew there is a silent, constant scream within me. I do my best to
muffle its vibrations. I keep busy. I do what has to be done. I advocate. I
write. I try to keep the scream buried. Sometimes I think I fear that if I do
scream, I will never be able to stop. Some people may say that I still haven't
totally accepted my child's disability. Maybe I haven't. Maybe I never will.
Maybe the scream is my way of not accepting. Who knows? Many of you will
understand what I am trying to convey here. I'm sure many adults with
disabilities also have the silent scream within. It's caused by all the
unfairness and frustration that always tags along with disabilities. It's the
force, the adrenaline, the vibration that keeps us moving, whether it be in mind
or in body. It can be channeled into constructive areas or it can lead straight
to destruction. The person who feels it must make the choice--whether to scream
aloud or to continue to scream silently
10.
No
Longer Alone
Written April 10 1996
Copyright 1996, Lori Kutnink
http://www.ctf.org/cgi-bin/bb/ultimatebb.cgi?ubb=get_topic;f=2;t=002477
I stood at the fork in the road and I could no longer move. I could feel a
loss from within. I felt so alone.
I felt weakend and then I felt a kindered spirit, but I could not see it. I
some how felt a small speck of hope.
I felt ashamed of my failures and then I felt a gentle hand reach to me and
touch my shoulder, but I could not see it. I some how knew I was not alone
I felt fear of the unknown, and then I felt a hand take mine. But I could
see no one. I somehow knew I could face the fear now.
I felt drained and withered, and then I felt a hug. I could see no one
around me. But I knew now I could go on.
I shed a tear and it rolled down my cheek. And then I felt a tear of
another. But I saw no one. I felt I could be whole again
I walked forwared and I knew I would not walk alone. I heard the whispers of
many in my ear "We are here."
11. Isn't She
Talking Yet
by India Knight
http://timesonline.typepad.com/india_knight/reader_stories/index.html
We have a daughter with
an unusual chromosomal disorder and Asperger's syndrome-she is now 26 and living
semi-independently. Over the yeas she has brought us both enormous joy and also
feelings of despair. However, all is well-she is now happy working part-time in
a charity shop and our family and marriage have survived these difficulties.
I just want to pass on
one tiny bit of advice
for
new parents of
a child with special needs, which may be helpful. I used to find my daughter'
birthday party very sad when she was little because it high-lighted how far
behind her peers she had fallen - developmentally. After a couple of traumatic
years when I did what people normally do - that is, invite her contemporaries to
her party and watch them crawling, speaking, walking and doing everything way in
advance of her - I then decided to have a party inviting children and adults of
all ages - grannies, older cousins, siblings' friends, favourite people etc etc. It made
the whole occasion far easier and happier.
The other thing which I wish i had been more aware of is how difficult it was
for her sisters. They were both brilliant and very helpful, but my 'special'
daughter took up so much time, energy, brain-space etc etc that I feel we
under-estimated how over-shadowed the others were. Often there is not much one
can do about this, but being aware is a step in the right direction. A
psychologist once told us to stop trying to do everything as a family, and give
more time to each child individually. This was very helpful advice."
12.
I am
for mothers
©
Michelle Guppy
http://stevens_mom.tripod.com/id7.html
I am the little engine that did. When on my journey in life, my tracks led me to
a mountain - a diagnosis of Autism - I looked at it with defeat - thinking there
was no way I could climb over it. I then pondered the obstacle before me, and I
then said to myself over and over, "I think I can, I think I can...," then I
slowly started climbing the mountain saying to myself over and over, "I know I
can, I know I can,...." and then I made it over that ominous diagnosis of Autism
and continued my journey. I am the little engine that did.
I am more devoted than Noah's wife. I am cooped up in this "houseboat" for 365
days and 365 nights a year, constantly taking care of and cleaning up after my
"herd of animals." And when the storms of isolation and monotony become most
unbearable, I do not jump ship. Instead I wait for the rainbow that is sure to
come.
I am Xena. Real life warrior goddess of Autism. With my steel plated armor I can
fight anyone who gets in the way of progress for my child. I can fight the
stares and ignorance of typpies - those without autism in their lives - and
educate them as to why my child is the way he is, and why he does the things he
does. I can fight the schools to have them properly educate my child. And I can
fight denied insurance claims to get coverage for my child. Yes, I am Xena - and
I am armed for battle...
I am Betsy Ross. I am part of History by my contribution to the Autism Awareness
Quilt -- many pieces of fabric representing many states, stitched together, that
will collectively symbolize Freedom. Freedom from the lack of information about
Autism, Freedom from not knowing what causes Autism, and Freedom from the lack
of funding and research to treat, overcome, and live with - Autism. Like Betsy's
piece of fabric, my piece of fabric will someday sit in a museum, for others to
see my 12.5 x 12.5 inch memorial of a battle well fought. Whether my child is
"cured" in my lifetime does not matter, in the end what will matter to me and to
my child, is that I never surrendered.
I am the Bionic Woman. I have X-Ray vision - I can see through the mask of
autism on my child's face, and see the beauty in his soul and the intelligence
in his eyes --- when others can't. I have super-hearing - I can look at my child
when he smiles at me, and hear his voice say, "I Love You Mommy," --- even
though he can't talk. Yes, I am thankful to be Bionic.
I am Mary. A not so well known mother of an Autistic child who was brought here
to touch the souls of those around him, in a way that will forever change them.
And it started with me. By teaching me things I would never have known, by
bringing me friendships I never would have had, and by opening my eyes as to
what really matters in life. Things like keeping the Faith, never losing Hope,
and knowing a Love that that words cannot express. Yes, I too am blessed by a
special child, just like Mary.
I am Superwoman. I am able to leap over tall loads of laundry in a single bound,
and run faster than a speeding bullet, to chase my child as he dashes out the
front door and heads for the busy street. Oh yes, without a doubt, I am
Superwoman.
I am Moses. I am doing my part in leading other parents and society to more
awareness, knowledge, and resources, and most of all - Faith. Like Moses did, I
too, will sometimes meet with resistance from those who don't believe. And like
Moses, God will give me the small Miracles here and there, needed to accomplish
my mission.
I am Stretch Armstrong - a mom that can be stretched beyond belief - and still
somehow return to normal. I can stretch limited funds to cover every treatment
and therapy that insurance won't. I can stretch my patience as I explain my
child's biomedical issues with yet another uneducated doctor. I can stretch what
time I have, and share it with my husband, my
children, my church, and still have some leftover to help others. Yes, my name
is Stretch. And I have the stretch-marks to prove it!
I am Rosa Parks. I refuse to move or waver in what I believe is right for my
child --simply because my view is the minority, not the majority. I refuse to
believe "What can one mother do?" But instead, I will write, call, and rally to
the government, and do whatever it takes to bring equality for my child.
I am Hercules. The Greek god known for strength and courage. The heavy loads I
must carry would make others crumble to the ground. The weight of Sorrow, Fear
at uncertainty of the future, Injustice at having no answers, and from Tears of
despair, would alone possibly be too much, --- even for Hercules. But then the
Joy, Laughter, Smiles, and Tears of pride, - at my child's accomplishments, -
balance the load to make it easy to bear.
I am touched by an Angel. An Angel who is often described as living in a world
of his own. And it's true. He lives in a world of innocence and purity. A world
without hatred or deceit. A world where everyone is beautiful and where no-one
is ugly. A world where there is always enough time. A world where he goes to bed
with no worries of tomorrow and wakes up with no regrets of the past. Yes, I
most certainly am touched by an Angel, and I sometimes think that his world is
better....
I am a mom of a special needs child, all the above, and so much more. Somedays I
will want to be none of the above - and just be a typical mom with a typical
child, doing typical things. On those days I will know it's o.k. to be angry,
and to cry, and to lean on my friends for support. Because after all, ---the
most important thing I am, ..... is human.
13.
Mothers who get something more
Lori Borgman
http://stevens_mom.tripod.com/id7.html
Expectant mothers waiting for a newborn's arrival say they don't care what sex
the baby is. They just want it to have ten fingers and ten toes.
Mothers lie.
Every mother wants so much more. She wants a perfectly healthy baby with a round
head, rosebud lips, button nose, beautiful eyes and satin skin. She wants a baby
so gorgeous that people will pity the Gerber baby for being flat-out ugly.
She wants a baby that will roll over, sit up and take those first steps right on
schedule (according to the baby development chart on page 57, column two). Every
mother wants a baby that can see, hear, run, jump and fire neurons by the
billions. She wants a kid that can smack the ball out of the park and do toe
points that are the envy of the entire ballet class. Call it greed if you want,
but a mother wants what a mother wants. Some mothers get babies with something
more.
Maybe you're one who got a baby with a condition you couldn't pronounce, a spine
that didn't fuse, a missing chromosome or a palette that didn't close. The
doctor's words took your breath away. It was just like the time at recess in the
fourth grade when you didn't see the kick ball coming and it knocked the wind
right out of you.
Some of you left the hospital with a healthy bundle, then, months, even years
later, took him in for a routine visit, or scheduled her for a well check, and
crashed head first into a brick wall as you bore the brunt of devastating news.
It didn't seem possible. That didn't run in your family. Could this really be
happening in your lifetime?
I watch the Olympics for the sheer thrill of seeing finely sculpted bodies. It's
not a lust thing, it's a wondrous thing. They appear as specimens without flaw
-- muscles, strength and coordination all working in perfect harmony. Then an
athlete walks over to a tote bag, rustles through the contents and pulls out an
inhaler.
There's no such thing as a perfect body. Everybody will bear something at some
time or another. Maybe the affliction will be apparent to curious eyes, or maybe
it will be unseen, quietly treated with trips to the doctor, therapy or surgery.
Mothers of children with disabilities live the limitations with them.
Frankly, I don't know how you do it. Sometimes you mothers scare me. How you
lift that kid in and out of the wheelchair twenty times a day. How you monitor
tests, track medications, and serve as the gatekeeper to a hundred specialists
yammering in your ear.
I wonder how you endure the cliches and the platitudes, the well-intentioned
souls explaining how G-d is at work when you've occasionally questioned if G-d
is on strike. I even wonder how you endure schmaltzy columns like this one --
saluting you, painting you as hero and saint, when you know you're ordinary. You
snap, you bark, you bite. You didn't volunteer for this, you didn't jump up and
down in the motherhood line yelling, "Choose me, G-d. Choose me! I've got what
it takes."
You're a woman who doesn't have time to step back and put things in perspective,
so let me do it for you. From where I sit, you're way ahead of the pack. You've
developed the strength of a draft horse while holding onto the delicacy of a
daffodil. You have a heart that melts like chocolate in a glove box in July,
counter-balanced against the stubbornness of an Ozark mule.
You are the mother, advocate and protector of a child with a disability. You're
a neighbor, a friend, a woman I pass at church and my sister-in-law. You're a
wonder.
You can read more by Lori Borgman at
http://www.loriborgman.com
14.
Where Are the Parents?
Adapted
from a paper By Sue Stuyvesant -The author of this adapted version wishes to
remain anonymous.
http://stevens_mom.tripod.com/id7.html
Where Are the Parents?
They
are on the phone to doctors and hospitals, fighting with insurance companies,
wading through the red tape in order that their child's medical needs can be
properly addressed.
They
are buried under a mountain of paperwork and medical bills, trying to make sense
of a system that seems designed to confuse and intimidate all but the very
savvy. They are weary because everyone says they cannot help them, and oh,
Autism is excluded from your health insurance policy because it is a
psychological problem, not a physiological problem.
Where
are the parents?
They
are on the phone to school districts, teachers, special education
administrators, trying to get what is just for their children. They are buried
under a mountain of regulations and lawsthat
purport to help them, but just serve to confuse them. They are trying to become
school house lawyers just to get what the law already says they are their
rights. They try to explain why it is not acceptable for Johnny or Mary to sit
in the chair without stimulation for four hours a day, or why circle time is
just not something that a child with autism can understand.
Where
are the parents?
They
are at home, diapering their 6 year old son. They are chasing their child, who
does not understand the need to eat, or who is allergic to food, because of the
exorbitant behavior the allergies to food bring on. They spend hours trying to
convince a child to eat that has no
interest. They are administering medications, hoping and wondering if there is
anything that science will do to help.
Where
are the parents?
They
are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for
tests results to come back and wondering: is this the time when my child doesn't
pull through?
It
seems that Johnny ran out into the road because he did not know any better.
Where
are the parents?
They
are incapacitated, after the sleeping aid the doctor prescribed for Johnny had
the opposite effect, and caused the child to stay up for 10 strait days.
Somehow, they were not able to come to the meeting.
Where
are the parents?
They
are home reading books about behaviorism and psychology, hoping to learn enough
to make some difference in their child's lives, because the professionals have
told them that discreet trial or 40 hours a week of intense behavioral
intervention is not appropriate for a child. "The child needs to play" they
say but the child does not know how to play. "The child needs to socialize"
they say, but the child does not know how to play.
Where
are the parents?
They
are sleeping in shifts because their child won't sleep more than 2 or 3 hours a
night, and must constantly be watched, lest he do himself, or another member of
the family, harm. They have not slept in years. They are sitting at home with
their child because family and friends are either too intimidated or too
unwilling to help with child care and the state agencies that are designed to
help are suffering cut backs of there own.
Where
are the parents?
They
are trying to spend time with their non-disabled children, as they try to make
up for the extra time and effort that is critical to keeping their disabled
child alive. They are struggling to keep a marriage together, because adversity
does not always bring you closer. They are working 2 and sometime 3 jobs in
order to keep up with the extra expenses. They cannot make the meeting because
it was only acceptable to the professionals to hold it during the day, when the
parent has to be at work. There is no vacation left, or sick days. And sometimes
they are a single parent struggling to do it all by themselves.
Where
are the parents?
They
are trying to survive in a society that pays lip service to helping those in
need, as long as it doesn't cost them anything. They are trying to patch their
broken dreams together so thatthey
might have some sort of normal life for their children and their families.
15.
Autism and
Holiday Gatherings ~ Viki Gayhardt
http://stevens_mom.tripod.com/id7.html
Dear Family and
Friends:
I understand
that we will be visiting each other for the holidays this year! Sometimes these
visits can be very hard for me, but here is some information that might help our
visit to be more successful.
As you probably
know, I am challenged by a hidden disability called autism or what some people
refer to as a pervasive developmental disorder (PDD).
Autism/PDD is a
neurodevelopmental disorder which makes it hard for me to understand the
environment around me. I have barriers in my brain that you can't see but which
make it difficult for me to adapt to my surroundings.
Sometimes I may
seem rude and abrupt, but it is only because I have to try so hard to understand
people and at the same time, make myself understood. People with autism have
different abilities: some may not speak, some write beautiful poetry. Others are
whizzes in math (Albert Einstein was thought to be autistic), or have difficulty
making friends. We are all different and need various degrees of support.
Sometimes when
I am touched unexpectedly, it might feel painful and make me want to run away. I
get easily frustrated, too. Being with lots of other people is like standing
next to a moving freight train and trying to decide how and when to jump aboard.
I feel frightened and confused a lot of the time, like you would if you landed
on an alien planet and didn't understand how the inhabitants communicated. This
is why I need to have things the same as much as possible. Once I learn how
things happen, I can get by ok. But if something, anything changes, then I have
to relearn the situation all over again! It is very hard.
When you try to
talk to me, I often can't understand what you say because there is a lot of
distraction around. I have to concentrate very hard to hear and understand one
thing at a time. You might think I am ignoring you--I am not. Rather, I am
hearing everything and not knowing what is most important to respond to.
Holidays are
exceptionally hard because there are so many different people, places and things
going on that are out of my ordinary realm. This may be fun and adventurous for
most people, but for me, it's very hard work and can be extremely stressful.
I often have to
get away from all the commotion to calm down. It would be great if you had a
private place set up to where I could retreat.
If I cannot sit
at the meal table, do not think I am misbehaved or that my parents have no
control over me. Sitting in one place for even 5 minutes is often impossible for
me. I feel so antsy and overwhelmed by all the smells, sounds, and people--I
just have to get up and move about. Please don't hold up your meal for me--go on
without me and my parents will handle the situation the best way they know.
Eating in
general is hard for me. If you understand that autism is a sensory processing
disorder, it's no wonder eating is a problem! Think of all the senses involved
with eating: sight, smell, taste, touch AND all the complicated mechanics that
are involved with chewing and swallowing that a lot of people with autism have
trouble with. I am not being picky -- I literally cannot eat certain food as my
sensory system and/or oral motor coordination are impaired.
Don't be
disappointed if mommy hasn't dressed me in starch and bows. It's because she
knows how much stiff and frilly clothes can drive me buggy! I have to feel
comfortable in my clothes or I will just be miserable! Temple Grandin, a very
smart adult with autism, has taught people that when she had to wear stiff
petticoats as a child, she felt like her skin was being rubbed with sandpaper. I
often feel the same way in dressy clothes.
When I go to
someone else's house, I may appear bossy and controlling. In a sense, I am being
controlling because that is how I try to fit into the world around me (which is
so hard to figure out!) Things have to be done in a way I am familiar with or
else I might get confused and frustrated. It doesn't mean you have to change the
way you are doing things -- just please be patient with me and understanding of
how I have to cope...mom and dad have no control over how my autism makes me
feel inside.
People with
autism often have little things that they do to help themselves feel more
comfortable. The grown ups call it "self regulation," or "stimming'. I might
rock, hum, flick my fingers in my face, flap my arms or any number of different
things. I am not trying to be disruptive or weird. Again, I am doing what I have
to do for my brain to adapt to your world.
Sometimes I
cannot stop myself from talking, singing, or partaking in an activity. The grown
ups call this "perseverating" which is kind of like self-regulation or stimming.
I do this only because I have found something to occupy myself that makes me
feel comfortable, and I don't want to come out of that comfortable place and
join your hard-to-figure-out-world. Perseverative behaviors are good to a
certain degree because they help me calm down.
Please be
respectful to my mom and dad if they let me "stim" for a while as they know me
best and what helps to calm me. Remember that my mom and dad have to watch me
much more closely than the average child. This is for my own safety,
preservation of your possessions, and to facilitate my integration with you
tippies (what we autistics fondly call you neurotypical folk!) It hurts my
parents' feelings to be criticized for being over-protective or condemned for
not watching me close enough. They are human and have been given an assignment
intended for saints. My parents are good people and need your support.
Holidays are
filled with sights, sounds, and smells. The average household is turned into a
busy, frantic, festive place. Remember that this may be fun for you tippies but
it's very hard work for me to conform. If I fall apart or act out in a way that
you consider socially inappropriate, please remember that I don't possess the
neurological system that is required to follow tippy rules.
I am a unique
person--an interesting person. I will find my place at this celebration that is
comfortable for us all as long as you'll try to view the world through my eyes!
16.
Just
For This Day
©Sally
Meyer ~ 1998
http://stevens_mom.tripod.com/id7.html
1
Just for this morning I am going to smile when I see your face, and laugh when I
feel like crying.
Just for this morning I will let you wake up softly in your flannel p.j.'s and
hold you until you are ready to stir.
Just for this morning, I will let you choose what you want to wear, and I will
say how beautiful you are.
Just for this morning I will step over the laundry to pick you up, and take you
to the park to play.
Just for this morning I will leave the dishes in the sink, and let you teach me
how to put that puzzle together.
Just for this afternoon I will unplug the telephone and keep the computer off,
and sit with you in the garden blowing bubbles.
Just for this afternoon I will not yell once, not even a tiny grumble when you
scream and whine for the ice cream truck and I will buy you one, if he comes by.
Just for this afternoon I wont worry about what you are going to be when you
grow up, or how you might have been before your diagnosis.
Just for this afternoon, I will let you help me make cookies, and I won't stand
over you. . . trying to 'fix things.
Just for this afternoon, I will take you to McDonalds and buy us both a 'Happy
Meal' So you can have two toys.
Just for this evening, I will hold you in my arms and tell you the story of how
you were born, and how much we love you.
2
Just for this evening, I will let you splash in the bathtub, and I won't get
angry when you your water over your sisters head.
Just for this evening I will let you stay up late, while we sit on the porch
swing and count all the stars.
Just for this evening I will bring you glasses of water, and snuggle beside you
for hours, and miss my favorite t.v. show.
Just for this evening when I kneel down to pray, I will simply be grateful for
all that I have, and not ask for anything,
Except ...
Just one more day.
17. I
WAS LIKE YOU.......ONCE (for Dhylan)
©Sally Meyers
http://stevens_mom.tripod.com/id7.html
If you see me at the supermarket,
And my child is screaming, rolling on the floor
With anger seeping from his pores.
Please don't blame me, I was like you once.
If you are in a restaurant and my child throws food
And it
hits you in the face, please, don't be angry,
I can't handle any more rage.
If you see my child climbing over a very tall fence
With nothing on except his hat.
Please don't call the police, I only looked away for a minute.
If you see me crying, as you pull up next to me at a stop light,
At a busy intersection, honk and smile, I need a friend.
If you see me, running down the street with curlers in my hair
Chasing a small child who runs so fast, I can't catch him
Help me chase him down.
If my child grabs your child, or pushes him or bites or
Kicks him, or says words that make your hair curl,
Please forgive him, and me too.
If you happen to see us, walking in your neighbourhood,
Or in the malls, or at the park,
Please
don't turn away,
I was like you once.
18. Every Silver Lining Has a Cloud
by India Knight
http://timesonline.typepad.com/india_knight/reader_stories/index.html
The central
problem is seems to me is this: how do you come with daily life am talking
about The Aliens-that is, all the people who have no idea what parents like us
are going through or how we feel, and-quite understandably, really, because
everyone is pre-occupied with their own problems - don't want to know?
Like all parents of severely disabled children, I am consumed by 'anxiety,
sorrow and blind terror', as you so eloquently put it. I don't like
to whine or sound self-pitying, so I never talk about how I feel, to anyone.
Some friends and family may disagree, but what I've said to them is only the tip
of a very deep, very frozen iceberg.
19. Telling it Like it Is
By Jo Pearson
http://timesonline.typepad.com/india_knight/reader_stories/index.html
“I never wanted
to be the mother of a special needs child. Well, who does? I didn’t know
much about disability, and I came from the sort of family who weren’t very
tolerant of it. The disabled kids (Down’s Syndrome, in the main) that I saw in
the 1970s were universally
appallingly and inappropriately dressed. So when I gave birth to my son and he
wasn’t ‘normal,’ my first, shameful thought was ‘Oh God, I won’t be able to
dress him in anything nice’. How shallow is that?
20. Keeping Things in Perspective
© Mary Gorman, April 1999
jbgorman@juno.com
http://stevens_mom.tripod.com/id7.html
I hear a mother
complain about her child "talking back to her" and think... I wish my child
could talk. I see two brothers playing tag at the park and think... I wish my
child could do that.
I hear a mother complain about her daughter's choice of wardrobe and think... I
wish my child could choose and dress himself. I see my son line up his legos and
think... I wish he would build something with them.
I complain about my child's picky eating... and think about all the children who
have to be fed through tubes. I see my child climbing on the table... and think
of the children who can't walk or climb.
I see a child with leukemia and think... at least my child is physically
healthy. I receive from and give hugs to my son... and think of the mothers
who've never received a hug from their child.
I hear my son say "Mama" for the first time and I thank God.
I look at my son and wonder at the beautiful gift God has given me.
God only gives us as much as we can handle. Sometimes it seems as though we
cannot cope with all the struggles, but we must remember we are CHOSEN as strong
parents of very special children.
Mary Gorman
Mom to Nathan (autistic) and Jesse (speech delayed) -- 3 year old fraternal
twins, and Luke (9 months)
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