A resource of articles and encouraging words selected to inspire your journey through the world of Autism, Asperger's and other Special Needs. Check back often for additions to my collection.
Hello. Allow me to introduce myself to you. My name is autism. Perhaps you know me or know of me. I am a condition, "disorder" that affects many people. I strike at will, when and where I want. Unlike Downs Syndrome or other birth "defects," I leave no marks on those I strike. In fact, I pride myself on the ability to infiltrate a child's life, while leaving him or her strikingly handsome. Many people may not even know I am there. They blame the child for what I cause him or her to do. I am autism and I do as I please.
I am autism. I strike boys and girls. infants and toddlers. I find my best victims to be boys around the age of 2, but any child will do. I like children and they are always the true victims, though I take hostage the others in the child's family as well. It is a bit like getting two for the price of one. I affect one child and "infect" the entire family.
I am autism. I strike rich and poor alike. The rich combat me with education and therapy. The poor shut their children away and cannot afford to fight me. I am able to win in the lives of poor children more than I am those of the wealthy, but I will try to take root anywhere.
I am autism. I am an equal opportunity disorder. I strike whites, blacks, Mexicans, Ukrainians, Russians, Poles, Slavs, Japanese, Koreans and Fins. In fact, I strike everywhere on Earth. I know no geographical bounds.
I am autism. I do not discriminate based upon religion either. I strike Jews and Christians, Muslims and Buddhists, Atheists and Agnostics. I do not care what religion a person is or what beliefs he may hold. When I strike, there will be little time for any of that anyway. When they find me, they will question everything they believe in, so why would I strike only one group? I have affected followers of every religion on the planet.
I am autism and I am strong and getting stronger every year, every month, every day, every minute and every second. I am concerned that money might be allotted to combat me and my takeover of children, but so far, I have little to fear. Some countries like Kuwait are spending quite a bit of money to assist those who I have targeted and some, like the United States, would rather spend money on such ludicrous things as discovering the number of American Indians who practice Voodoo, as opposed to combating me. In an atmosphere such as that, I can flourish and wreck havoc at will. In places such as that, I rub my hands with glee at the problems I can cause to children, their families and to the society at large.
I am autism. When I come, I come to stay. I take the dreams and hopes of families and trample them with delight. I see the fear and confusion in the eyes of my victims and see the formation of wrinkles, the worries and pain on the face of their parents. I see the embarrassment their child causes because of me and the parents unsuccessful attempt to hide their child, and me. I see tears the parents cry and feel the tears of their child. I am autism. I leave sorrow in my wake.
I am autism. I taketh away and give nothing but bewilderment and loathing in return. I take speech and learning. I take socialization and understanding. I take away "common sense" and, if I am allowed to flourish, I take away all but their physical life. What I leave behind, is almost worse than death.
I am autism. I fear nothing except courage, which I thankfully see little of. I fear those who take a stand against me and attempt to fight me and bring others into the fight as well. I fear those who try to make it safe and easier for my victims in the community, and their families. I fear those who push ahead, despite the fact that I am in tow. I fear the day I will be eradicated from the planet. Yet, I do not fear too much right now. There is no need.
I am autism and I bet you know me or know of me. If you don't, you probably will soon. I am marching forward faster than I ever have before. I am looking for new children all the time. I am looking for new children to consume and new lives to destroy. I dread the day I will be looked upon with pity or worse yet, understanding, for that day, is the day I will begin to die.
But in the mean time I am safe, free to prowl onward. Free to cause the pain and suffering that I do so well. I am on a mission and have much work to do and thankfully no one is stopping me yet.
Hello. Allow me to introduce myself. My name is autism. Perhaps you know me or know of me, if not don't worry, you will meet me soon.
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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 undergo 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 psychology.
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.
by Maureen K. Higgins
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Before I was even a twinkle in your eye, God picked you to be my Daddy.
He fashioned my body with a reason and a purpose and He knew I needed you to help me through this life.
He knew I'd need your strong arms to carry me when I couldn't walk.
He knew I'd need your fun laugh to cheer me when I was sad.
He knew you'd sit with me for hours and cuddle when I felt sick.
He knew your adventurous spirit would make my life so fun and normal.
He knew you'd spend lots of time with me to make me feel special.
He knew I would thrive as you shared with me your love of the outdoors.
He knew Mommy needed a strong shoulder to cry on to support her through tough times.
I do know that Daddies get frustrated sometimes because they want to 'fix' things and make the bad times 'go away' That's just the way God made Daddies!
I know you would do anything to make my struggles disappear.
I also know that you will always be my biggest fan! You'll always be my hero!
We're a good team, you and me.
I'm teaching you about God and His eternal perspective.
You're teaching me to enjoy this beautiful life and our journey here on Earth.
We've both learned to be thankful for the little things in life.
You and Mommy don't take any of my accomplishments and milestones for granted.
I revel in the pride that shines from your adoring eyes.
I know that I can try anything if I set my mind to it-- As long as you are behind me to cheer me on and catch me when I fall.
I see glimpses of my Heavenly Father in your eyes, the love, the pride, the pain and the unconditional acceptance.
I am whole and perfect in your eyes.
I am beautiful and charming in your eyes.
You don't care that I may not be just like all the other little girls.
That's why you love me so much!
One thing is for sure, I have you wrapped around my little finger and I won't ever let you go.
Thank you for loving me for who I am
and for guiding me towards Heaven where someday I will run and jump and maybe even fly!
I can't wait for the day when I am holding your hand and God's hand
and we are walking together into the sunrise of forever.
If Dr. Seuss had a Special Child
Dear Mom-I-am, dear Mom-I-am, we have a problem, Mom-I-am.
Your son won't do what he must do. He drives me crazy, yes, it's true!
He will stall and squirm and hum, and leave all of his work undone.
He dreams and will not pay attention, have you considered medication?
With other kids he does not play, he is alone much of the day.
Something does not seem quite right, because I know he must be bright.
He seems to learn, despite the rest, but the work is not his best.
He is disruptive, yes it's true. He just won't do what he must do!
Yes, teacher I can really see, how frustrating all this must be.
A child who does not meet the norm, a child whose mold won't fit the form.
I've had him tested on WICS-III, by your approved test agency.
He scores much higher than the mean, there's more to this than can be seen.
So help us, help us find the way, to teach this child best if we may.
He is not like the rest you see, he acts and thinks far differently.
We need another way to teach him, another way to finally reach him.
Not the normal thing you do, but something altogether new!
What! Something new - go bar the door! We've not done it that way before!
If we do this thing for you, then all the rest will want it too!
Change our ways, that can't be done. Same for all, not changed for some.
All children are gifted, yes it's true! Just MAKE him do what he must do!
Please, please, teacher, hear me through. The laws say you must help us, too.
His needs are different than the rest, we CAN help him to do his best.
We can make this easy too; it will not be more work for you.
This can work out, you will see. Try it, try it, please, for me?
All right, all right, if I must. I still maintain this is not just.
But first there is red tape you see, test and checks and IEP.
And after weeks and months of proving, finally we can begin moving.
Then I'll try it and we'll see, if this method is the key.
Hey, I see something, yes I do! We have found something he will do!
No more fiddle, squirm and hum, no more worksheets left undone.
He's zipping through, he's learning fast, he's doing his best work at last.
Why did I put up a fight? I guess dear Mom, that you were right.
By Mary Beth Northrup
(published with permission)
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Welcome to Holland 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 are new to your child's diagnosis there is a pain that rips through your heart that only another parent with the same experience can even begin to understand. I think Emily Perl Kingsley does a wonderful job of describing that early time after diagnosis in "Welcome To Holland".
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. Michelangelo's David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After 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! 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 guide books. 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...and you begin to notice that Holland has windmills...and Holland has tulips. 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 will never, ever, ever, ever, go away...because the loss of that dream is a very, 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.
Copyright 1987 by Emily Perl Kingsley
All Rights Reserved
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...
Remember that he is, first of all, my child.
Let me see him smiling in his sleep and let me think about how handsome he is
and not about how delayed that smile was in coming.
Help me not lose sight of my son in the shadow of his limitations
I know that you care for my child and that you work hard with him.
I need your expertise to help him become all that he is capable of being.
You need my help in understanding who he really is
and in following through at home with things that are important.
Remember, though, that you send him home at night and have weekends off and paid vacations.
Let me have the luxury of having a vacation, sometimes physically,
sometimes just emotionally, for a day, a week, a month, without your judging me.
I will be there for him when you are long gone.
I love my child with an intensity that you can only imagine.
If on a given day I am tired or cross with him, listen to me,
lighten my burden, but do not judge me.
Celebrate with me, rejoice in who he is and who he will become
but forgive me if from time to time I shed a tear for who he might have been.