I work with children with disabilities at a mental health hospital, but Sawyer is my own son, and I worry that what we do will set him back or not progress as fast as he could.  So Sawyer and I spend time in the bathroom even though it makes him cry.

I thought that maybe he needed a role model (yes, I had role modeled it for him the way only a dad can, but I am 6’4” and did not want to role model using the potty chair), I saw Sawyer’s doll Buddy.  This stuffed guy with his baby face and red coveralls was ignored by Sawyer and slated for Goodwill, but I thought maybe I could put him to use.

“Sawyer, come use your potty chair.”  I called to Sawyer as I propped Sawyer’s Buddy doll on the potty chair.  “See, Buddy’s a big boy.” Sawyer laughed to see his doll on the potty.  I wanted to show Sawyer that the potty chair was perfectly harmless and fun.  He liked Buddy being on there, but wouldn’t sit on the chair himself without crying.

Exhausted from teaching all day, I went back to work with him on the flashcards that Early Childhood had sent as homework.  I  used my teaching techniques to push Sawyer towards progress.  I gave M&M as rewards and pair it with verbal praise, but I was, frankly, frustrated.

Then Sawyer got up and carried Buddy into the bathroom.  And sure enough, Buddy had to pee-pee.  Sawyer resisted even sitting on the potty, but Buddy started going on a fairly regular basis.  With Sawyer’s prompting, Buddy tinkled as I poured water between his fiber-stuffed legs.

Night after night, Buddy began to do everything that Sawyer was supposed to do.  Buddy went in the high chair to eat and signed for all done.  Sawyer deferred the flashcards to Buddy.  Sawyer, Buddy and I sat on the floor and went through the flashcards together.  I asked Sawyer to pick the right card of the three choices laid out.  Through gestures, Sawyer showed that he wanted Buddy to pick the right card.  I had Buddy pick the right card and rewarded him with a M&M.  Sawyer loved that and wanted Buddy to keep going.  Sawyer even occasionally took a turn, but I began to wonder if Sawyer had as much chance of talking as Buddy did.

Then as Sawyer climbed down off my lap one night, he placed Buddy on my lap as a stand-in for him.  This spark of imaginative play is what every parent of a child with Autism wants to see. His act of kindness filled me with hope because I see children with Autism and Asperger’s get labeled as “terminally obnoxious” because they cannot interpret other’s feelings.

Sawyer gave me Buddy so that I would have companionship -or maybe he was allowing Buddy to have some affection, either way it was an act of kindness.  As I believe that giving is the key to happiness, this act of kindness was the first sign that allowed me to believe that everything would turn out all right for my son.

There would be other lessons that my son would need to teach me before I could stop worrying about his future or even his childhood.  But I could finally believe that things were going to be okay after this incident in the bathroom. Sawyer had a tantrum about sitting on the potty.   I looked at him.  “Are you a naughty boy?” I asked, teasing him about his minor tantrum.

“No. I happy boy.”

When you have a nonverbal child that begins to talk, you have a lot of questions to ask him.  He didn’t really answer my teasing question, but rather the question that was most often on my mind.

Author Unknown

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

Someone forgot to mention that I would listen to my child’s simple utterances, or attempted approximations, as if he was a world leader giving the speech of a lifetime.  I could never have imagined the worth of a single word despite the fact that I may never hear it again.

Someone forgot to mention that when my son was finally potty trained at age 9 there would be few people that would understand the significance of such an accomplishment, and even fewer that I could actually share it with.  Accomplishments of any size, their true worth known only to me, would bring quiet celebrations between my son and I.

Someone should have mentioned that Autism is messy!  That wallpaper’s meant to be shredded, bathrooms are designed to be flooded, walls are bare in order to smear stuff on them, washable paint really isn’t, and that most food will actually be crushed or dropped on the floor.

Any parent can readily recall what it felt like the first time they held their child for the first time after birth.  In my opinion there is no better feeling in the world.  Someone should have mentioned that each time your child with Autism initiates or engages in a reciprocal hug, that feeling that you had when you held them for the first time comes back, time and time again.

I wish someone would’ve mentioned that Autism is extremely expensive!  Doctors, therapists, medications, supplements, conferences, and sensory equipment are only the tip of the iceberg.  I could not have guessed that it would be my child’s disability which allowed people to cross our path in life that otherwise would not have, and that those people would respond to a child in need with such love and generosity.

Finally, what they forgot to mention the day my son was diagnosed with Autism, is that the triumphs over his disability would far outweigh the tears, that laughter would eventually ease the sense of loss, and that sheer faith would allow me, and millions of other parents, to fall into bed exhausted each night only to get up the next day eager to discover what else they forgot to mention.

Author Unknown

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

The first year was challenging.  Josh had trouble sleeping, eating and was often sick.  At age 2 he was not speaking more than 3 words.  Our first speech therapist assured us he was fine and recommended once a week speech therapy.  Over the next few months, as we were on a waiting list for speech services, we watched our little boy slip away from us.  He lost the 3 words he had, stopped looking at us, continued to have trouble eating, and continued to have frequent illnesses.

He was on multiple breathing medications, constantly drooled, and lost interest in the world around him.  In the middle of his second year, we were told our son had Autism and Apraxia of Speech.  Being an Occupational Therapist myself, I was not terribly surprised but none the less devastated.

Other than being told to pursue therapies, we were left directionless.  I began on a mission to find out how to help our son.  I started a journal and wrote down everything that happened in Josh’s life.  I read everything I could get my hands on.  Josh went through 2 more speech therapists before finding one that he didn’t run away from.  Through all the rough times those first 2 years my husband and I would occasionally see signs from Josh that he really did want to be in our world and needed our help getting there.

It wasn’t until after Josh’s 3rd birthday that he began making sounds again.  However, during his second year of life, we began noticing special skills in our son.  He had an usual love for numbers and letters.  He was counting with number magnets and knew all 26 letters of the alphabet.  Yet he could not talk.

In my journal, a particular entry on July 25th, 2003, stands out in my memory.  I had arrived at the daycare where my son had attended since birth.  Josh was 2 and 1/2 years old.  He was outside in an enclosed play area for the toddlers.  He saw me from across the play area and looked at me; for probably 20-30 seconds.  It was as if he was seeing me for the first time.  It took my breath away.  He didn’t look at me after that for a long time, but I knew I would reach him eventually.

We continued with therapies and also began the dietary interventions of gluten free and dairy/casein free eating.  It was very difficult and expensive, but how could I not try it?   What if it helped?  Soon our son began talking. He stopped being sick and was taken off all breathing medications.  Speech progress was very slow and tiring, but hearing his voice was music to our ears.

Josh worked very hard and was delighted with his accomplishments.  Once talking, we found out he could read as well as count into the hundreds and spell 100′s of words.  He began interacting with us and occasionally with others too.  He was getting closer to our world. Our hard work continued over the next 2 years.  Keeping him focused on his homework, and making sure his food was safe, but as close to normal as possible.

Reading in my journal again leads me to the most memorable entry.  It was May 2005.  It had been a long day with the kids.  I was putting Joshua to bed.   After tucking him in and saying goodnight, Josh said goodnight to me!  I was so happy to hear him return my nightly gesture. I said “Thanks Josh”.  He looked at me and said “I love you”.

That was the first time he had ever said those words to me.  It was Mother’s Day.

Author Unknown

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

We did as most parents do.  We read books, sang songs, and played with both of our children. We enjoyed the busy life of raising two toddlers, sixteen months apart.  But a nagging worry surrounded me about my little boy.

At ten months, he sat up, crawled, pulled himself up as a many do at that age, but he had no apparent need to interact with us.  I would go into his room in the morning to find him sitting pressed into the corner of his crib.  He did not hold up his arms or cry to me to be picked up as his sister had done just months before.  While sitting on the living room floor surrounded by toys and books, his preferred toy would be anything that could dangle or flap.  He would tap his foot on the floor repetitively while staring at it.  I remember joking with my husband, “It looks like he’s Autistic.”

My mother had been a special education teacher, and she brought stories home about the children in her life.  Among the children she taught was a boy with Autism.  Thinking more about that boy, and watching my own little guy not reach milestones his sister had reached, made me investigate further.  I went on to the internet and searched my gut fear, that Timothy had Autism.  I looked for criteria for Autism and found a DSM1V, a diagnostic checklist that is used to check for symptoms that are characteristic of Autism.  Timothy had many of them.

Being only sixteen months at the time, it was hard to find anyone who could diagnose him.  We lived in a large city, and our own pediatrician told us that this was typical male development.  We would have to watch over a longer period of time to reach any kind of diagnosis. But having researched autism extensively, being fairly confident that I knew my own child, and wanting the best outcome for our family, I pressed on for answers.

I contacted the local Autism Society and received a list of local services and doctors.  We decided on a pediatrician who specialized in developmental disorders and was associated with a children’s hospital.  She observed Tim on a rainy Friday.  My husband and I both knew what she would find.

As part of her observation, she asked for us to leave the office and return to see if there would be any separation difficulties.  I knew there would be none.  I often joked we could leave Timothy with the mailman and as long as he was fed and watered, he would be happy.  We truly wanted him to cry for us, but there were no tears except our own.  The doctor told us she expected autism, but would have to watch him over a longer period of time.  We cried, and she asked us, “Isn’t what I am telling you what you expected?”  I replied, “I really wanted to be wrong.”

Timothy is now ten years old.  He is a beautiful boy and we have done the best we can for him.  We have had many challenges over the years, but what I have learned from the outset is to follow my gut.  We knew Tim had Autism before anyone, and we followed our instincts to do what was best for him.  We have always found that if we persevere, we can get the help that we need.

There are many people who have helped us along the way including family, friends and a long list of professionals.  But I have to say the greatest teacher, guide, helper I have had on this journey has to be my son, Timothy.  He taught me to follow my instincts, to persevere when it doesn’t seem worth it anymore, and how to love unconditionally.

Author Unknown

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

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)