How easily we take for granted that simple, little gesture.  Yet, how significant its impact when it is lacking.  I was always told that as a good listener you must give eye contact and other appropriate body language to let the speaker know you are paying attention.  So, does that mean he’s not listening to me?  Probably.  Maybe.  And if the eyes are truly the “windows to our soul,” will my son never be able recognize or acknowledge the true essence of another person?

Some adults inflicted with the same, mild form of autism as my son have been able to articulate their position on this (allegedly) essential, non-verbal communication skill.  Their general consensus is that they can’t concentrate on what you are saying if they have to look you in the eye.  It’s almost painful for them.  But more than that, I imagine that they don’t really see the need for it at all.  Just because we don’t think they are listening doesn’t mean they aren’t.

Neurotypicals, as the rest of us are called, must come across as being a really self-conscious bunch, always needing affirmation and validation, both verbal and non-verbal.  It reminds me of a story of a mother who asked her teenage son with high functioning autism why he never tells her he loves her.  “I already told you when I was seven; my feelings for you haven’t changed,” was his response.

So, why do I need eye contact from my son to feel that we have a bond or connection?  It’s not his hang-up.  At school they are teaching him to look people in the eye when they speak to him, and God love him, he is trying.  Yet, sometimes it feels more like he’s looking through you, rather than at you.

So much pressure to put on such a small child who did not choose his Autism.  If I didn’t have my other three children who are capable of providing eye contact, would it be harder for me to accept my son’s limitation?  Would I be more desperate than ever for it?  Or would I be able to come to terms with it sooner, being that it would be all I’d ever known?

Parenting a child with special needs forces you to adjust your expectations.  This doesn’t always have to be negative, though.  I’ve learned that what is important for me as a mother is to let my children love me anyway they know how.  My oldest daughter has many ways of showing me love.  She is very affectionate and tells me constantly that she loves me.  We even butt heads frequently on many issues.  This, too, is another way she shows her love for me, as a measure of trust.  Even my two, young babies express their love for me.  They cry when they see me leave the house, and then show such excitement upon my return.

My son shows his love for me, too, in his own special way.  When I see him concentrating on his drawings or hear him laughing at his favorite cartoons, I know he is happy and, we are meeting his needs.  Although his speech is improving, he still can’t quite communicate with me in the typical way.  However, when he tells me the same knock-knock joke for the twentieth time in a row, I know he is sharing something important with me.  He wants to hear me laugh with him.  I know that he could have chosen to sit in his room, cocooning himself in his flannel Tigger sheet, with only his stuffed animals for companionship.  No, he has chosen to be near me, rather than disappear into his own world.   For this I am grateful.  Eye contact, or no eye contact, I love him too.

By Jen Warwick

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.

After my mom read William Shaw’s book “Biological Treatments of Autism And Pervasive Developmental Disorders” we visited the US for a specific therapy named “sensory learning” done by Mary Bolles in Boulder Colorado. My brother had some tests, and we realized that he had Candida ,so he had to quit eating wheat and drinking milk.

As we live in Turkey, it was hard to find GF/CF food because my lovely country was unaware of the need for gluten free foods and at that time these kinds of GF/CF foods were unavailable in Izmir. My mother was ordering some cake mixes from internet but the delivery unfortunately took 2 months by shipping.

In 2002 I visited my cousin who was studying in Nice/France. Her and I both tried to find the specific gluten-free casein-free store and it was so hard to find. It was raining that day so we decided to find the address from the internet and the following day we have finally reached the store.

The store was full of people buying one or two things necessary for the next days but me and my cousin had filled the cart with many, many cakes, pastas, soy puddings, cookies, breads, and rice milk. Pretty much a lifetime supply.

And guess what had happened? All the people in the shop stopped buying and started to look directly at us like we were nuts! But we ignored their weird looks and put all the food into a suit case and carried it out and walked all the way from the GFCF store on the fancy streets of Nice to our flat.

At the airport I had to pay 150€ because of the heaviness of the suitcase. Finally, back at home my dear brother was screaming like crazy when he saw all the food he could eat without any prohibition.

By Gulser Vardarci

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.

As a Chicken Soup co-author I’m always looking for your stories to share with everyone else.  Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions.  I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis.  Here is one from Charisa Spatig!

Basketball Players Changed Tanner!
(by Cherisa Spating)

My son Tanner was diagnosed with PDD/NOS at age 8. He is now 11 and a total sports junkie. Our story starts last year at this time. I had received a paper from his school that the High School Boys Basketball Team was sponsoring a 3 day camp for the kids in our community. Tanner so wanted to go. He had watched all these boys play football and loved every minute of that. I was a little leery to send him. So being the over protective parent I called the mom who was in charge. Her name is Melissa and she has become a great friend since this. I told her a little bit about Tanner, and that I would be more than happy to come to the camp and knew he would love it. She suggested assigning him a “partner”. I thought that was a great idea. Little did I know how much that would change my son’s life?

The day of the camp came, and Tanner was thrilled he got to go. We got to the school and there is this 6 foot 2 redheaded kid, a junior in high school waiting for Tanner to get there. His name is Tyler, and that kid has been my angel sent straight from heaven. He took Tanner and said see you at 8. They not only taught him basketball skills they have taught him much more. I love this entire High School Team. Not only have they kept him involved in all they have done over the last year. He has been invited to high school graduation dinners, got to sit with the team at all their home games. Tanner can tell you which kind of Gatorade drink each of those boys will have during the game.  Every member on the Football and Basketball Team know him, and it doesn’t matter where we are they always talk to him.

So now with the 2011-2012 season starting Tanner is again at basketball camp, but this time he doesn’t need to have a one-on-one. Although Tyler is not far away, he is enjoying the game just like everyone else his age is. All the senior boys Tyler, Matt, Rocco, Will, and their Coach Bubba will never know how much they mean to Tanner and our family. Because of this team and their support to Tanner he has joined a Baseball Team, Special Olympics, and is now known as t Evanston, Wyoming High School Red Devil’s # 1 Fan.

All My Readers,

As a Chicken Soup co-author I’m always looking for your stories to share with everyone else.  Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions.  I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis.  Here is the thirteenth one from Maya!

A Message from Maya!

Dear Karen

Thank you so, so, so, so much.

I can’t find the right words to thank you because I think this word is nothing compared to what you have done for me.  You have opened my eyes to a new world.  Before communicating with you I was very sad because I felt lonely.  I thought that no one else understood me or how I felt thinking of my child’s future.  How can he manage his life or even live without me – I couldn’t sleep at night thinking of how he will live, study, get married, or have children in the future? 

Maybe you think I exaggerate but I really want to ask you something and I want you to answer me honestly in a personal message please.  “My child is diagnosed with an autism spectrum disorder, do you think that he has a chance to be cured?   I mean to be treated and live a normal life just like any other child?  Please answer me and thank you very much. 

You are an angel .

Maya

All My Readers,

As a Chicken Soup co-author I’m always looking for your stories to share with everyone else.  Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions.  I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis.  Here is the twelvth one from Holly McBain!

Cookie-Cutter Mentality Needs to Go

(by HollyMcBain)

Just now I was researching potty-training because my 6 year old son, who is diagnosed as High Functioning Autistic, still is not using the toilet. He turned 6 on July 29^th and is in the 1^st grade. Besides being HFA he also has a speech delay including cognition issues. When he was 3 years old he had a vocabulary of about 12 – 15 words. After trying a variety of private and semi-private therapies, we placed him in the PPCD program with the school district and he blossomed. Needless to say he and his brother (Asperger’s Syndrome) are the light of our lives.

Anyway, back to my point about cookie-cutter mentality needs to go: while researching potty-training for people with ASD I once again ran into the proverbial “brick wall” of just set up a routine and stick with it” approach. I really do not understand why that when dealing with a “spectrum” disorder, intelligent professionals want to place everyone in one category. Both of our boys are on the Autism Spectrum with both being extremely intelligent; but that is where their similarities end. From there, they are as different as night and day, so why would one process or plan work for both? It wouldn’t.

How I work with, discipline and deal with them is very different – not only because one is 6 and the other 8, but also because each one is an individual with their own characteristics, tastes, idiosyncrasies and issues. I realize that no one book is going to encompass the litany of possibilities to choose from when developing strategies for your child, however listing in one paragraph how to develop a potty-training routine using a cooking timer is just a wee bit simplified and seems almost condescending because essentially for me it is “been there, done that”.

I am looking for help to understand my child’s issues with potty-training and help him understand what I am trying to explain to him. Have you ever tried asking someone “are you getting the pee signal” who is autistic? God knows what he thinks I am asking – it could be anywhere from thinking a bell should ring to getting a phone call or some acute pain. I have no clue if he really understands because he cannot enunciate to me what is or is not happening just prior to soiling his diaper. So to offer advice like “oh just use a timer and set up a schedule” is useless information for me.

This is what I mean by cookie-cutter mentality – if every person on the Autism Spectrum is different in their issues, why aren’t there a greater variety of ways to help them? You know we are taught not to “pigeon-hole” neuro-typical children because everyone is their own individual entity. Maybe it is time this was extended in greater detail for ASD kids and adults.

All My Readers,

As a Chicken Soup co-author I’m always looking for your stories to share with everyone else.  Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions.  I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis.  Here is the tenth one from Jeff Stimpson!

The Terrible 13′s
(By Jeff Stimpson)

 My son Alex, who has autism, just turned 13. Hair is sprouting all over his body. He’s started using roll-on.  His voice has deepened.  Parts of him are suddenly stunningly large.  Others don’t seem to be growing at all.  “He must be getting very … wilful,” says his service coordinator, looking at him in our living room.  He’s watching Elmo.  I can see his first moustache from here.  Yes.

It seems a blink ago that he was a premature baby in an isolette in a neonatal intensive care unit. It was 13 years ago.  It was a blink ago – about 15 minutes, actually – that my wife Jill called to say:  “We haven’t had a good outing.  He’s lying down on the line for the registers and I’ve tried taking his ear and it didn’t work.  People are staring.  It’s going to take a special set of people for him, and we’re not them.”

“I didn’t like it when he was five and he drank out of puddles, but nobody laughed at him and nobody made fun of him,” Jill says. True.  But in the past six months Alex has become more embarrassing than at any time in his life. People are starting to look at Alex, then look away, then look back, as if at a train wreck, says Jill.  They never used to.  He pitches forward and back on stiff legs.  His voice is getting loud and embarrassing as he sprawls on the floor of a store and bellows “Banana!”  Jill says that during their recent outing Alex had to use the bathroom.   Jill can’t go in the bathroom with him anymore, of course. She says a boy about 13 came out while Alex was in there.  “You could tell he didn’t want to be in there with Alex,” Jill says.  “People are starting to react to him.”  She also said her legs hurt when she returned with him.

His school – school,  that bastion of sanity in Alex’s life – has reported that he needs a 1:1 para-professional to shadow and monitor him so he doesn’t bolt to the playground or barge into counselling sessions with students or into classrooms.  “With hormones and puberty and everything going on, it’s becoming a little too much for him to focus,” said his head teacher.  Indeed.

An adult recreation program I tried to get him into last month sure reacted to him. They found him in a pre-school room on the fourth floor, with its huge red rubber ball and Elmo books.  We all watched him press the ball to his midsection and flip through Elmo books.  “He’s obviously more comfortable in this environment and we’re not set up to deliver that,” says one staffer, speaking of the big ball and the Elmo books.

He grabs his crotch these days and purrs “Mooooommmmmmmyyyyy …”  We tell him to do that in private, when he’s alone.  He does it on the sidewalk, too, between bouts of running ahead of us, shouting, bobbing and weaving and biting his arm.  “God it’s embarrassing,” says Jill.”   I hate to say it, but it’s true.”  He seems to prefer men as companions — I sure found females confusing at 13, too — and when out with a female sitter recently darted into a health club kids’ room and started pressing a big ball against his midsection.

Can the teachers, can anybody, help him understand that he shouldn’t leave our apartment and bust in on neighbours?  Stop biting his arm when frustrated, stop unravelling and ripping his own T shirts? Can they help him understand the dangers of traffic?  “I can’t have him run across the street when I have five kids back here on this corner,” his teacher says.

Busting in at home:  There was the couple that we think was having sex.  The young woman in the middle of her first brunch for friends in her newly renovated two-bedroom.  There was the couple with the great cats.  The family with all the expensive ship models in glass cases that I could picture Alex missing by a hair as he darted into their apartment.  There was the surgeon. “Do you need any help?” he asked.  He wasn’t smiling; neither was his wife. “He took my hand and tried to go right in,” Mrs. Surgeon said. Alex was sprawled on the carpet outside their door.

I bought three white plastic doorknob covers for babies  (babies, for Christ’s Sake; Alex is shaving.). Aunt Julie suggests a combination lock.  Ideal, but we checked into this back in 2006 when Alex first bolted.  You want a what?, the locksmith asked.  He figured, after some head-scratching, that a combo lock wouldn’t work that way – the bolt goes into the door jamb the wrong way– unless installed upside down.

I’ve sent notes to neighbours, and made Alex apologize in person.  “I’m sorry,” he says;  I stand there wondering if he knows what the syllables mean.  Jill suggests that when he gets home from school, we take him out.  “Take him floor to floor.  Let him get it out of his system.”  This sort of works  for one night.

“Will he get over this?” they asked at a sexuality and autism workshop a year ago. This is the question I asked a prospective babysitter (…babies, for Christ’s Sake…) whom I interviewed this afternoon. You can expect more aggression, said the first.  Sure it’s normal, said the second.  Great, but once again in my son’s life I feel myself groping for what others find normal.

jeffslife.tripod.com/alextheboy
Twitter Name: Jeffslife

“Alex: The Fathering of a Preemie” (on Amazon and at academychicago.com) and “Alex the Boy: Episodes From A Family’s Life With Autism” (available at vervante.com and on Amazon)

All My Readers,

As a Chicken Soup co-author I’m always looking for your stories to share with everyone else.  Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions.  I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis.  Here is the eighth one from Caroline Washington!

Judging a Book by its Cover
(By Caroline Washington)

That saying was told to me as a child, but it’s a saying some of us have forgotten. When I go out with my son in public most people automatically assume that I am a bad mother because Uriah has tantrums in public. My son is a normal little boy in so many ways, but I know that my Child has Autism Spectrum Disorder.

Uriah was diagnosed with Autism in June of 2000. As a mother, I felt guilty because I thought it was caused by something I had done. Of course, now I realize that I couldn’t have done anything to control the Autism. Yet, that doesn’t stop the hurt that I feel. With Autism, I find myself struggling to keep my child’s life as normal and stress-free as possible.

 Like many, I had never heard of this disorder before 2000. It took a neurological doctor to explain that it is a developmental disability. Uriah’s mind works like a two and half year olds. He has little or no speech, he tantrums a lot, which has led to a behavioral problem. As a mother, I want him to experience the same things other kids do, but I find it hard to do so. Not because the kids aren’t accepting of his Autism, but because of the adults. I guess they feel that if Uriah plays with their kids in the park, then their kids might become “special” too! Things like that have not stopped me from taking Uriah out, I just explain to them that Uriah’s brain works a little different from everybody else’s.

In December of 2000, I decided to leave my job to care for him full-time. It hasn’t been easy going from a two income household down to one. I guess, in my mind, there was going to be a system set up to help me financially. I quickly discovered there wasn’t. In the beginning, Uriah had qualified for SSI disability, but when my husband received a raise at work he was cut off.

My son is now in a public school program for special needs children and I keep being told he could use extra speech and occupational therapy, something my husband’s insurance does not cover. I find myself working with flash cards and the like at home, hoping this will help until his Autism Waiver is approved. (I have been told this can take up to seven years). I never regret that Uriah is here, because I realize that my son gives me a purpose.

My life’s joy is to help Uriah succeed in whatever he wants to do now and in the future, and to let other people know that when they see a child acting out in the store or whatever, don’t just assume it’s bad parenting. It just maybe a special child acting out…and they cannot help themselves. That’s why it’s not good to Judge a Book by its Cover.

All My Readers,

As a Chicken Soup co-author I’m always looking for your stories to share with everyone else.  Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions.  I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis.  Here is the seventh one from Matt McLain!

Patience Really is a Virtue
(By Matt McLain)

As parents of a special needs child, we hear the word, “patience” every day and sometimes even more. But, have you ever really stopped to focus on just what that word means when dealing with the day-to-day struggles of caring for your special needs child?

As a father of a child with Autism, it took me quite some time to really figure out the importance of exercising patience with my son.

Lately, I have noticed when my son goes into a tantrum or outburst, instead of becoming frustrated and going from 0-60 in mere seconds…exercising patience is really, as they say, a virtue. If I step back and count to ten and calmly ask him to show me what is wrong, or show me what he needs, he will calm down much quicker and proceed to communicate with me the best way he can. I have to remember, it is just as frustrating for him to not be able to communicate with me as it is for me to be able to understand his outbursts and communication struggles.

Exercising patience aids in opening up a communication doorway and, in my opinion, strengthens the bond between you and your special someone. I believe our children have a unique and intelligent understanding of the world around them, and we, as parents, just need to be more patient to further understand what they perceive as normal, every day.

So the next time you feel frustrated or hear someone say, “be patient,” really stop and give it a try; it just may be the key to unlocking some of the mysteries behind the communication barriers with special needs children…and maybe even relieve some of the stress you deal with every day.

Matt McLain
Owner – Ready, Set, Bloom, LLC.
www.myreadysetbloom.com

All My Readers,

As a Chicken Soup co-author I’m always looking for your stories to share with everyone else.  Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions.  I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis.  Here is the fifth one from Nancy Bernotaitis!

Autism Is Definitely Not for Wimps

(By Nancy Bernotaitis)

I’ve heard it said that parenthood is not for wimps.  If that’s true, then parenting a child with autism is definitely not for wimps.  

With two fairly well-adjusted kids and a marriage intact, I thought I was pretty good at the mommy thing.  Then God threw us a curveball.  Remember everything you’ve learned about being a mom?  Well, throw it out the window because it won’t work.  Your special child will not care how his behavior affects anyone else, if “everyone in the store is looking” at him, or if he should be ashamed of himself.  He’s not.  Being the parent of a special needs child is going to challenge your imagination, creativity, and patience more than you ever thought possible.  You will be forced to look at the world through his eyes and figure out how he thinks, how he sees the world, before you can begin to figure out why he does the things he does.  Then you’ll have to adapt your way of doing things to accommodate that. 

For instance, when we began toilet training our youngest, we would sit him on the toilet backwards, which required complete undressing from the waist down, to be sure his aim was on target.  After a year of this, we decided it was time for him to stand up like all the other boys.   Our older son had made this transition on his own so we figured it was just natural.  Lesson #1, almost nothing comes natural to our special kids.  When we tried to stand him in front of the toilet, he would scream bloody-murder until we gave in, mostly out of fear, and quickly placed him on the toilet backwards.  So I analyzed the situation, looking at it from his point of view.  He obviously did not understand what we were asking of him.  I then took a piece of construction paper, traced around his feet, stuck it to the floor in front of the toilet with contact paper, and waited for nature to call.  When it did, I walked him into the bathroom, stepped onto the outlines with my own feet, and then backed up.  I, literally, saw the lightbulb go on over his head and heard an audible *ding*.  He then stepped into the outline of his own feet and tinkled in the toilet.  Problem solved!  It was a miracle! 

Nothing in my life before I had a special needs child prepared me for the life I have now.  It’s stressful, chaotic, frustrating, and challenging beyond belief.  When I was the mother of two typical kids, I was arrogant, I’ll admit it.  I breezed through the day kissing boo-boos and packing lunches like Mary Poppins.  Then I fell down the rabbit hole.  It’s as if everything has been magnified.  It’s 100 times harder than parenting a typical child but when joy comes, it’s overwhelming.  I get sad when I realize that parents of typical kids just have the typical milestones to reach.  Nothing spectacular, everyone does it eventually.  They rarely get to feel that they’ve witnessed a miracle.  With autism, there is no roadmap so everything is a surprise, everything is huge, everything is a gift.   Don’t get me wrong, I enjoyed my typical children as they reached each and every milestone, but with this last one I get to witness a miracle every single day.

About the author:  Nancy Bernotaitis is the mother of three children, two “typicals” and one diagnosed with autism.  She provides in-home childcare specializing in special needs.  Nancy currently volunteers as President of the Dayton Chapter of the Autism Society of America and sits on several committees including the Miami Valley Autism Coalition, the Ohio Autism Coalition, and the Parent Advisory Council.  She lives in Dayton, Ohio with her husband of 20 years, her 3 kids, an autism service dog, and 3 cats.

All My Readers,

As a Chicken Soup co-author I’m always looking for your stories to share with everyone else.  Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions.  I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis.  Here is the fourth one from Cristy Bobbett!

Children Are The True Educators

By Cristy Bobbett 

I have been a special education teacher in fully inclusive classrooms for the West Genesee School District since 2003.  Prior to that, I taught at Edward Smith Elementary School in the Syracuse City School District for 12 years.  My students have Autism, Down Syndrome, CP, ED, etc.  Many of my students are/were non-verbal, and many of them are no longer non verbal.  Many were non readers, and now are reading.  I have been blessed in my job and thought I would share with you some of my thoughts. 

I have been working with and teaching children with special needs for the past 18 years.  In that time I have come to the realization that the children, my students, have actually been teaching me.  I will never be able to fully explain in words what these beautiful children and their families have done for my perspective on life as well as for the beauty that I see every day in people.  Children with special needs have so much to teach us if we allow them to.

I have learned through doing, that fully inclusive classrooms (if done right) are not only successful places for all students, but actually amazing places where everyone; students, teachers and administrators become better learners, teachers, friends, and people.

I have learned that there are no limits to what children with special needs can do.  We as educators, parents and neighbors are the ones with limits.  Limits that we put on children when we can’t see the way to make a situation work. 

I have learned that the families of children with special needs are some of the most special families this world has to offer.  I have witnessed unbelievable acts of selflessness, love, courage, perseverance and grace from the parents, grandparents and siblings of the children I have had the honor to teach.

I have learned to think deeper, analyze more critically and prioritize the true goal of a situation, job or experience is, in order to adapt or modify myself, the surroundings, materials or curriculum, so that all children can reach their full potential every day.

I have learned that sometimes the best thing you can do is back away and let children figure things out for themselves.  Young children can and will make friends everywhere they go, especially if we, the adults get out of their way.

I have learned that there is no other job in the world that would allow me to spend my time trying to help others and better other people’s lives while my life is actually being improved and bettered in ways that can not be measured.

I have learned to be thankful for everyday, no matter what it brings and to look forward to each September hoping that I can give as much to the children and families that walk into my classroom as they give to me.

Cristy Bobbett
M.S. Special Education