Stories From the Heart: Destiny Joy

“She has Down Syndrome.” The words were spoken kindly and calmly by the midwife, but their impact simultaneously demolished the last shred of hope for my failing marriage. How would I support these three children by myself? How would I do full time care of this most precious institutionally needy infant and work to support the four of us? How would I know how to protect this little beauty from a world where I was never permitted to associate with “them” at school when I grew up?

At 40 years old I was a stay at home mom who was confused and terrified. A little child’s prophetic insight led me to embrace joy. Six year old, blonde, dimpled, wise beyond his years, hyperactive Reed tore through the house, blaring, “I’ll take care of her. I’m the big brother.”

Then miraculously he sat down contentedly and affixed on her eyes; while she connected to his for some 7 seconds. The last time I saw this kind of link was on Star Trek with mind melt. I tucked the memory in the pocket of my mother’s heart. I was amazed.

The moment was interrupted when Cherish’s lacey bloomers pressed against my thigh, while her knees gored my tummy, and she crawled in to the bed to snuggle. She was trying to get to her sister for her turn. “I’m the big sister! Let me hold her.” Cherish was ballerinas, dollies, and tea party three. Her dark, brown, long, hair curling around her exquisite, black-lashed eyes, brushed against the baby’s cheek. I reached in time to rescue our five pound pink and blue, tiny angel with the straight line across her palms, curled little finger, flattened nose, and slanting eyes.

Oh how the three of us adored this extraordinary, five pound, mini-babe. Tears, tears and more tears. Would they ever stop? The children were staring with painful wonder. I knew they must be told. “Darlings, you know how momma’s been crying a lot lately?” “Yes,” said Cherish wiping my face with a tissue as Reed nodded and rubbed his hand over the baby’s head so gingerly. “Well, uh, umm” I stammered while biting my lip and searching for the most succinct and tactful words.

“Well, you know I’ve been crying a lot and haven’t really stopped and this is not like me?” Their heads bobbed like two gorgeous springy, China dolls. How did I put all the complexities of the last three days into terms they could understand? I didn’t quite realize that I was crying for our new one’s medical survival and safety. I was crying for my own inadequacy to perform this great task with so few special need skills. How was I to become worthy of this gifted child?

“Well, first, I am so grateful our baby made it to us safely and I love her so very, very much. I don’t cry because of anything you or she has done. Do you understand? You and the baby are terrific. I am so happy to have all of you.” They squeezed in closer.  ” I am crying because, uh, because…well…you know our baby is, ah….different. It’s a good difference but she is different and our life will be different too.”

Reed burst out, “I know how she’s different! I know how she’s different!” You do? You know how she’s different? I was thinking of how I would tell them about the twenty-first chromosome, their dad’s leaving, and how we’d have to move with no money or house. Fortunately, I bit my tongue instead and responded, “Well, honey, what do you know? Please share.”

“Momma, I know that she has a lot more love in her than anyone else!”

Somehow, all the loftier scientific and sociological aspects did not matter. “Reed, you are absolutely right. She has lots more love for all of us and we’ll be just fine.” The four of us hugged together. We were so proud of our Destiny Joy.

By Kathilyn Baker Wilcox

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

Stories From the Heart: A Mother Knows Best

A mother knows when something isn’t right. Even at 19 years old I knew that there was something different about my baby.  I knew that his life was going to be a challenge and that mine would forever be changed from not just that of a carefree teenager to a young parent, but to a parent of a child with a condition that would force me to recognize that I had passed on a trait so complicated it would take most of my adult life to help him find his way.

I named him Justin Daniel, he was beautiful.  He arrived five weeks early but the doctors said he was a picture of health!  From the moment I held him I was sure there was something different about my baby, but I quickly dismissed it for new parent jitters. But within months it was obvious I was right.  He wasn’t hitting his milestones.  Everything was delayed.

Justin had some other odd behaviors as well, he didn’t sleep through the night, loud noises bothered him, he didn’t like to make eye contact with people, he preferred not to be held unless he was nursing, and he only liked to play with toys the had a predominance of red in them.  The only exception was his teddy bear, George, who was brown.

When Justin got to the age of two and a half he still wasn’t talking, I decided it was time for an evaluation, the results were shocking.   He had what appeared to be autistic tendencies or features.  But because of his age autism was not a diagnosis they would give him.  Instead he diagnosed with an expressive and receptive language disorder.  By the age of three he was using words but only in form of echolalia, repeating words back to you.  He still rocked and had severe gross motor and fine motor control issues.

Finally after he was potty trained they entered him into an early childhood program where he began to flourish.  The second diagnosis they gave him was autistic tendencies with expressive and receptive language based disorder and mental retardation.  I was shocked.  I refused to believe that my son was MR.  How could they decide that a three and a half year old child was MR when he could not sit still long enough to be adequately evaluated?  Fortunately not all the team agreed with the diagnosis and it was expunged.  The services continued and he stayed in the early childhood program until he was five.

Once he was five it was time to decide what to do, by now he was communicating at one year behind age level.  He had made great strides.  He was diagnosed with expressive and receptive language disorder but we made the decision to put him in a private non-service school.

When you are a parent of a child with these disabilities, sometimes you want to believe your child is normal.  They are better, it has gone away and he will be fine now.  What a mistake that was.  We got through kindergarten okay, but first grade saw a teacher who was very unsympathetic and was described by my son as ”a big fat frog face.”  Needless to say we did not make it through first grade.  Private special education school here we come.

Another thing about having a child with special education needs is there tends to be a lack of friendships, especially when there is a communication disorder at the helm.  Justin didn’t know how to start conversations with other kids; he just didn’t know what to say to them.  He had too many things to say in the form of questions.

I knew as a parent I had to find a way to help my son develop friendships, it wasn’t just about academics and the kids even in his school for special education found him different at his young age.  I was heartbroken for him.  He was isolated.  There were kids on our block and he would play with them a little, but there was a missing link with them as well.

Justin didn’t appear to care that much about not having friends to hang around with, he was content to play by himself. But as he got older the more curious he got in other people.  I pushed him to socialize because I felt it was important.

His first introduction to having to do this on his own was with the group that worked with kids with all kinds of disabilities, they took them on trips to places they would never be able to go otherwise and give them experiences they would never forget.

That is where he met his first best friend Bobby. Bobby also had disabilities; he had Cerebral Palsy and used a wheelchair to get around.  Justin and Bobby became best friends while at space camp.  Justin helped Bobby get around and do things, and Bobby helped Justin communicate and come out of his shell.  It was a match made in heaven.  Upon their return they were inseparable; they spent the night at each others houses, went to more events together, and became the best of friends.  For several years until Justin moved out of state he and Bobby remained great friends.

After the move Justin had to start all over again, new school, new friends, a new life.  Before he moved to his new school, he spent the summer in Nantucket, at a caddy camp.  He did a lot of growing up that summer.  He was teased and ridiculed, not given any breaks by any of the other boys, no one wanted to be his friend, but he stuck it out.  He wanted to make money to buy his first car, and he did make good money.

He also learned to get himself out of a couple jams, like finding transportation to Martha’s Vineyard to meet a friend of ours when the plane was cancelled.  He was able to problem solve his way through, and found our friend without even knowing where to look.

His disabilities in school were not as prevalent as his problems with receptive and expressive language, which did cause some problems in classes where discussions where part of the curriculum, and a lot of note taking was required.  He still had his autistic tendencies this showed up in flicking light switches, playing with any switches actually, his obsessive compulsiveness: everything in his room had to be in perfect order.  He actually labeled all the cabinets in the house for me.  And when the groceries arrived he would make sure they all got put away in the proper place.

It was always my hope that Justin would be able to not only get a job but hold one down successfully.  I was sure he would do a good job as OCD as he was, he had gotten his drivers license and was very careful so I was pleased with that, still he had a long way to go.  He got a job at a theatre as an usher, and then was moved to concession.  He did so well he was quickly promoted to cashier and within six months made supervisor.

Justin was surpassing expectations of the diagnosticians many years ago telling us he was MR and the most I could hope for was his working at a fast food restaurant wiping down tables. He was only seventeen and already supervising, plus going to school full time.  He was working thirty hours a week sometimes, with a disability, managing school and his job.  Within another six months he was promoted to manager.  Justin was doing well in school and at work.  His social life was lagging but he was excelling in all other areas.  I was worried about the hours he was working and warned him about it, but he thought he could handle it.  So as long as his grades did not suffer I let him continue.

Then it hit, one day I went into his room and he was gone.  Bags packed bed made and no Justin.  I was terrified.  He had left.  No note, he had just disappeared.  I was frantic.  I tried calling him and no response.  This is how Justin dealt with stress.  It had gotten to be too much for him.  He had no outlet.  I contacted the police and explained his situation to them and they were nice enough to put out a missing persons report on him because of his having disabilities.

About twelve hours later I got a call from him.  He was several hours out of town and in tears; he wanted help but didn’t know where to turn.  We talked and it was decided he would come home and we would strategize on what to do about work and school.  Things changed after that, he resigned from his job and got one that was not as stressful, he learned a lot about himself but realized he could not balance work and school to the degree he was doing.  The key to his success in learning this was that I did not interfere and save him from his learning this he got to learn it on his own.

Justin graduated from high school having learned a lot. He has a positive outlook on his life, he knows he has disabilities but he has a handle on them.  Since high school he has entered college and begun studying for a degree in business management.  He is also working as an accounting coordinator where he does accounts payables and receivables, works with students who have disabilities and teaches them to do financial planning, writes contracts for clients, and plans social recreational activities for students.

He has many friends at the age of 24; he has surpassed his difficulties with expressive and receptive language based skills.  His autistic behaviors are hardly noticeable and he is one of the most social people I know when it comes to being at a party.  He has surpassed expectations and actually owns his own home now.   Justin is also a national public speaker.   I owe it to all the programs he was in and his tenacity that he is the success he is today.

The one thing I know about working with young people who have disabilities is you have to let them have both successes and failures.  We can not rescue them each time they fail or they will give up trying.  We must push them to have experiences that will allow them to experience life the way anyone else would.  If we don’t we are condemning them to a meaningless existence, one that we create for them.

By Veronica Crawford

Veronica Crawford is the author of “Embracing the Monster:  Overcoming the Challenges of Hidden Disabilities”,  Brookes Publishing 2002.

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

Top 10 Apps and Software for Autism

Why is the iPad so important for working with autism in children? Steve Jobs probably never had this in mind while he was developing it, but the truth is this little gadget has revolutionized the world for nonverbal kids with autism.

Communication devices that before were cumbersome to use and cost several thousand dollars a pop have now been reduced to a unit as small as the iPad, and apps that cost between a dollar and in some cases a couple hundred dollars, depending on the complexity and program. That’s a huge advantage over the previous technology.

These apps and software became widely known throughout the world not only because of their features but also their abilities to manage autism behavior. Take a look at the best apps and softwares for autism.

Computer Programs and Apps for Children with Autism

From: www.healingautismandadhd.com

Autism TodayAdvances in technology have provided educators with an abundance of new tools to use in instruction. This is no exception for teachers educating those on the autism spectrum.From SMART Boards to iPads to the common computer, there are a number of software programs, websites and applications that support the needs of learners with autism.

Visit www.healingautismandadhd.com for more details.

Free Autism Apps

From: www.massmatch.org

autism-todayThe EmergingEDTech blog recommends a FREE app at iTunes today. Apps for Autism is a tool that provides an easy way to search and find apps that may be of benefit to individuals with autism or other special needs. App listings include screenshots for iPhone/iPad, reviews, and an email-to-a-friend funcition. The blog says, “This is a really top notch resource and we highly recommend it.”

If you want to learn more about the latest autism apps, visit www.massmatch.org.

Awesome Apps for Autism

From:  www.autismresearchfoundation.com

autism todayMost of us know what an app is. For those who don’t: “app” is short for application software, which helps a device user perform specific tasks. Most smartphones, handheld devices, and computers have apps that allow us to play games, catch up on the news, and connect us to social media.

Recently Hewlett-Packard (HP) hosted a “hackathon” for autism at their campus in Cupertino, California. What is a hackathon? I asked myself the same question.

At the hackathon about 100 HP tech members and autism advocates came together to work towards developing touch screen apps for children with autism.  Working with children who have autism, the team members began to develop apps that would help overcome the challenges individuals on the spectrum face daily

For more details, visit www.autismresearchfoundation.com.

Autism 5 – Point Scale EP App

From: www.otswithapps.com

Autism TodayAutism 5 -Point Scale EP is a free app for iPhone and iPad developed by the Autism Society of Minnesota. Ms. Van Dixhorn, EBD teacher at the Sheboygan Falls Middle   this app with me as an app to help with the programming of a student we mutually will work with. Not only free, but simple and easy to use for elementary  and older students who would benefit from a simple method of identifying emotions and feedback about how they feel and potentially what strategies they could use.

If you want to know how to use this app, visit www.otswithapps.com

Monster List of Apps for People with Autism

From: www.appsineducation.blogspot.com

autism todayThe touch screen interface and intuitive nature of the iPad has been a productive and inclusive way to provide educational experiences for people with Autism. Many schools and organisations use specific iPad apps as effective tools in the educational process but what if you had access to a whole suite of tools. This is exactly what these guys have done at iPad Apps & Resources for Autism. Compiled by a parent, an adult with Autism and an SLP; Shannon Des Roches Rosa, Corina Becker and SLP Jordan Sadler,  have collated a monster list of great apps for teaching people with Autism

Visit www.appsineducation.blogspot.com for more details.

Autism Apps for Iphones

From: www.lifewithpdd-nos.com

Autism TodayWe are excited to announce that our site now has access to sell apps for iPhone’s, iPad’s, Droid’s, Windows Devices, HTML, and even software for Mac and PC.  Click on the Autism Apps in the menu bar or click on the picture above.

“How do you sell iPhone apps when you are not the all mighty app store?”

Good question.

We have contracted with a company called the App Store that is affiliated Apple, Droid, Microsoft, etc… So when you purchase an iPhone app, it will take you to Apple’s App Store. For Droid, it will take you to the Market Place…and so on.

If you want to learn more about the best autism apps for Iphone, visit www.lifewithpdd-nos.com.

Social Express: Top Autism App

From: www.thesocialexpress.com

Autism TodayA big thank you to the community of kids with autism and the AutismSpeaks, Autism Awareness Campaign! The Social Express learning app for kids with autism was number 1 yesterday at the iTunes app store.

We loved being a part of the Light It Up Blue program. Helping Your Kids with Social Awarenes. We realized early that our twins with autism needed help learning social awareness. From the first time a therapist used her laptop in a session, we saw our sons’ interest in using technology to learn.

For more details, visit www.thesocialexpress.com.

Top 7 Visual Schedule and Social Story Apps For Autistic Children

From: www.autismpluggedin.com

Autism TodayThis is another one of Autism Plugged In’s list posts!  We’ll give you a quick overview of each app, and either link to iTunes or to one of our own posts so you can get more in depth with the application.  These are the Top 7 Visual Schedule and Social Story Apps for autistic children that we have been able to find online.  Some are for the iPhone, some are for the iPad, and all of them are great for kids on the spectrum!

The Time Timer app is one that we have already done an extensive review on here at Autism Plugged In, so if you’re interested in learning more after this quick overview, click on the the link!

The Time Timer application helps kids who are on the spectrum to visualize time.  They may know that they have 5 minutes until the next activity, but many people would agree that they don’t quite grasp how long a quantity of time is – they can’t easily wrap their mind around this abstract concept.  This app makes it simple to see how much time is left in an activity by representing the time with a color, and the color decreases steadily as time goes on.  This app is $1.99.

If you want to know how to use these top 7 apps for autistic people, visit www.autismpluggedin.com.

Free Autism Apps for iPod and iPhone

From: www.tjhouston.com

Autism TodayThis month is Autism awareness month. Kindergarten.com is giving away all of their updated apps for free. You can view the apps on your computer here or on your mobile device search the appstore for Kindergarten.com

Visit www.tjhouston.com for more details.

 

Autism Edmonton Keys to the Treasure Chest – Stephen Shore & Pamela Wolfberg

We are really excited to be less than a month away from our Upcoming Keys to the Treasure Chest Autism Workshop! This is a special notice to let you know that we have extended the early bird rates to now end on November 5th. Also, there has been a venue change and the new location is the Chateau Nova, 13920 Yellowhead Trail, Edmonton, AB. Registration is still at 8am and the event dates are November 15th & 16th 2012.

Please join us for Pamela Wolfberg, Ph.D. and Stephen Shore, Ed.D. – How Play, Socialization and Imagination Enhance – Learning for Children with Autism Spectrum Disorders

Visit: http://www.AutismEdmonton.com for full details

Announcing a Special 2-Day Workshop with Pamela Wolfberg, Ph.D. and Stephen Shore, Ed.D. with a focus on How Play, Socialization and Imagination Enhance Learning for Children with Autism Spectrum Disorders in Edmonton, Alberta on November 15th and 16th 2012.

Register Today for Early Bird Rates and to Save Your Seat!
Full details: http://www.AutismEdmonton.com

Keys to the Treasure Chest – How Play, Socialization and Imagination Enhance Learning for Children with Autism Spectrum Disorders

PRESENTATION DESCRIPTIONS:

Obstacles to Opportunities: An Inside View on Opening Doors Empowering Students with ASD’s to Succeed! – Stephen Shore, Ed.D.

Going against conventional wisdom, this presentation examines how deficits and challenges so pervasively attributed to autism can be re-framed as strengths. Employing an autobiographical structure combined with experiences of others with autism, participants will come away with practical solutions for considering characteristics of autism as potential springboards to success in education from preschool to post graduate, employment, effective self-advocacy, meaningful engagement in the community as building blocks for leading a fulfilling and productive life.

How Play, Socialization and Imagination Enhance Learning for Children with Autism Spectrum Disorders – Pamela Wolfberg, Ph.D.

This seminar addresses the unique needs of children on the autism spectrum in the areas of peer socialization, play and imagination, and inclusion in childhood culture. Participants will become familiar with the principles and practices of the Integrated Play Groups® (IPG) model. IPG is an empirically validated model designed to support children with autism in mutually engaging experiences with typical peers and siblings in natural settings. Based on award-winning research, the IPG model has been found to be effective in enhancing socialization, communication, play and imagination in children across the spectrum representing diverse ages, abilities, socioeconomic groups, languages and cultures. Extensions of the IPG model include innovations as sensory integration, drama, art, video and other creative activities of high interest for children, teens and adults.

Register Today for Early Bird Rates and to Save Your Seat!

Full details: http://www.AutismEdmonton.com

Look forward to seeing you at the event!

Autism Today
info@autismtoday.com

Autism Today – Books, DVDs, and Services – Families & Professionals

Stories From the Heart: Does Anybody Care?

Often times the easiest reaction to human tragedy is to ignore it.  Yet when one is surrounded by a hundred Profoundly Mentally Handicapped children who also live with a multitude of other challenges, there is no way one can walk away.  The expressions in their eyes can communicate volumes if one just stops long enough to listen.

A soft touch, a cheerful “Good morning”, or singing a simple song can bring a smile that warms my heart and is worth more than anything money can buy.  To be able to see these very special children enjoy a safe and loving school environment where they are valued, cherished, and empowered to be all they can be despite their limitations, gives me that energy to face my work day’s challenges.  Working with families who have the responsibility of caring for one of these completely dependent and fragile children is a special calling, and a privilege.

At my job as School Social Worker at Neva King Cooper Educational Center in Homestead, Florida, I began to understand from a professional perspective the tremendous challenges that our students’ families must face on an ongoing basis.

Many are blessed by having the support of family and friends. Sadly, I encounter many cases in which the stresses of having a special child was reason enough for a father to bail out, leaving a mother as the sole provider and caregiver for that child, and often for other siblings.  As if these challenges were not enough, some of these mothers lack family support and have no time to socialize. Many have no transportation, and because they are not eligible, have no access to the services that they so desperately need from government agencies.

I often hear the desperate cries, “Does anybody care?” I’m here to tell them, “Yes, God cares, I care…and many people care, and our community cares”.  My greatest joy is to be able to bring the hope that they need to carry them through those moments which may paralyze them with fear. And to help them take a deep breath and notice that there is joy even in the little things, like that child’s smile or the twinkle in their eyes.

To be able to introduce our community to these children and their needs has been one of the most encouraging things in my profession.  It is my mission to find and connect these families to the many resources that come from people who have chosen to step outside of their comfort zone and reach out to our neediest citizens.

It wasn’t until I was able to step into that “Special Needs Community Zone” myself, when our only daughter gave birth to our precious grandbaby Alyssa, that I was able to have a taste of what it is like to embrace one of these very special little ones in our own home.  You see, to everyone’s surprise, Alyssa was born with Down Syndrome and spent the first month of her life in the NICU due to complications from Bacterial Meningitis which left her with hearing loss in one ear.

I am now able to see Special Needs families from a new perspective.  I now have a new passion to bring hope and encouragement to the many families and tell them “Yes, people care!  I care, but most of all God cares, and is always there to meet needs and bring hope, often through people like you and I.“

By Sarah Laucirica, M.S.W.

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

Stories From the Heart: Little Ones to Him Belong

It was the first Sunday in December, which we refer to as the Advent of Hope Sunday. Christian, 3 years old son, had just been diagnosed with high functioning autism and I was very grieved with this news. In my attempt to sort out the grief and the pain, I started to go to church in order to seek God for the answers to my questions with my son’s disability.

My son is a beautiful little boy whose heart is amazing. He was talking, but it was limited. It seems like at that time in our journey to understand Autism, we hung on and waited with great anticipation. It was hard to accept the autism and I feel I used every means within my grasp to rage against and try to reach him.

In church, they showed a video of a family who had asked God for a child and after coming to the altar on the Advent of Hope Sunday and turning this over in prayer, they had found their family blessed with a child.

As I was listening to our minister talk about how amazing things had happened in our church on the Advent of Hope Sunday, I decided to go get Christian from the nursery to have him prayed over. I went and picked up from the nursery and was greeted so joyfully.

Christian was excited he was going into church. We walked to the altar and where greeted by a minister that also has a special needs child. I asked him to pray over Christian for his healing and we knelt down to pray.

I said to Christian “Let’s pray” and he said “I pray Mommy”. I was ready with my prayer to ask God for his healing of his Autism and for continued growth, when Christian began singing.

“Jesus loves me this I know. For the bible tells me so. Little ones to him belong. They are weak but he is strong. Yes… Jesus loves me”.

As tears streamed down my face, I realized that God had spoken to me through Christian, and I realized that Christian was loved exactly as he was. It was in that moment that I began to accept his disability as my meeting place with God and my place to heal.

I believe in what Christian’s heart was singing and saying. He gave a voice to his prayer and I was thankful for God’s blessings, to give voice to his heart.

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

Stories From the Heart: Lost and Found

I had lost a lot during the years preceding my work with the special needs community.  I had lost a mother to colon cancer.  I had lost guidance and wisdom, along with the money needed to finance my education, to my father’s alcoholism.  A nineteen-year-old boy, I felt as though I had lost myself.  Losing my job was the final nail in what felt at the time like a coffin. I struggled to find the heart to accept and embrace the many roles I needed to fulfill in my journey into manhood.

My roommate during this time of my life worked for a non-profit organization providing residential and day-support-services to severely and profoundly mentally handicapped individuals.  The residence needed a cook to work evenings and weekends.  I was more than a little skeptical.  I had no experience cooking for anyone other than myself.  More importantly, I had no experience working with special needs individuals, much less severely and profoundly needy individuals.

I lied to my interviewers and told them that I was an experienced cook. I had cooked breakfast, lunch and dinner for myself every day for the past several years.  That counted right?  I hate to admit this, but I thought to myself, ‘they won’t know the difference anyway.’  Not in reference to the interviewers, but toward the clientele.

The truth is that at this point in my life, I suffered from a case of situational heartlessness; some refer to it as selfishness. Whatever the affliction, I simply could not consider the needs of others while so overwhelmed with personal issues. I had yet to even meet the residents for whom I would cook breakfast, lunch and dinner.  That of course would soon change.

I started work on a Sunday morning, 6:30am.  The menu called for biscuits and gravy.  As I struggled to fulfill dietary specifications for fifteen clients, a voice sounded through the large window that connected the kitchen to the dining area.  “YEEA!….YEa…. yea,” said the voice.

After the “yeahs” came a knocking on the metallic counter and laughter that began loudly and continued in short, hushed, bursts as if some hilarious punch line were repeating over and over.  Then came another, “YEEEA! YEa…yea,” at first excited, then increasingly calmer and quieter.  The source of the “yeahs” yet unseen, I smiled as I approached the joviality.

Opposite the lunch counter and the window through which I would offer meals, sat a man unlike any man I had seen before.  Wheelchair bound, he sat buckled in atop a pair of tiny legs and feet that pointed in opposite directions from one another. He had an unusually large head with short, dirty-blond hair receding atop of a pumpkin forehead with several long scars above his left ear.  His arms, though disproportionately small in comparison to his head, looked strong.

The man’s appearance was shocking, but his smile displayed a warmth and curiosity with just a hint of mischievousness that forced me to smile along with him.  The man reached to his head and pretended to remove a handful of hair.  He extended his arm in my direction with balled fist, invisible hair and mischievous grin.  Unsure of how to proceed, I extended my right fist and touched my knuckles to his.  With this gesture the man burst into wild laughter.  I laughed too.  This was Jacob, my first friend and my introduction to the special needs community.

Jacob became a fixture at the lunch counter window.  No matter how I felt, I was greeted with a fake handful of hair and a laugh upon responding to Jacob’s friendly gestures.  Jacob laughed a lot and I enjoyed having him around, not just because he answered all of my questions with a “Yea.”  Though Jacob and I were fast friends, I proceeded with caution.

I met all of the clients and I learned why each person needed special care.  I learned what foods the clients could or could not ingest.  I learned who could not have spicy foods or artificial sweeteners.  Who needed pureed foods, thickened drinks, white sauce instead of tomato, or a special spoon.  I knew these people intimately yet I kept my distance behind the lunch counter.

I learned a lot about the staff as well.  The kitchen provided a quiet haven from the hectic environment looming just beyond the window.  Perhaps because of the quietude or the ease of conversation that comes with eating and drinking, or perhaps because I was the only male staff member, whatever the reason, my co-workers, perhaps unwittingly, divulged their innermost secrets within my presence.

When staff visited some spoke of personal problems, or those of co-workers.  Some spoke of the difficulty of the work or felt the need to justify working in “a place like this.”  A few expressed concern for the clientele and hoped to improve services.  I listened to them all.

During my first six months of cooking I witnessed nearly one hundred percent staff turnover, including two bosses.  I developed an ability to predict whether or not a new staff member would last, just by listening to their concerns.  Nearly always, staff who lasted more than four months were those with client well being in mind.  Both good and bad the staff helped to inspire my change of heart.

The changes came about slowly.  I began to notice the impact of my presence within the residence. I noticed how Manny would smile and roar like a dinosaur when I entered the building.  I roared back at him and waved.  Jacob was no longer alone at the lunch counter.  The counter resembled a drive in movie theatre with myself as the feature and wheelchairs in place of cars.  When new staff oriented I was asked to translate for Victor who, though difficult to understand, was the only client able to express his needs verbally.

To my own surprise I was beginning to take pride in the connections that I was making with the residents.  Because Victor was, in a sense, the voice of the residents, I felt as though I needed his blessing.  So far, I was unable to connect with him as I felt I had with other clients.  Gaining Victor’s trust would represent my most difficult challenge and my greatest reward.

Victor was the resident patriarch.  It was said that he either liked you, or he did not.  Victor had lived at the residence as long as anyone and he had long since honed his ability to weed out staff who would last and those who would not.  He listened and he observed and he knew better than to befriend a short-timer.  In Victor’s eyes, I was a new staff member and I was treated as such.

Victor complained about every meal that I prepared except  hotdogs, hamburgers, and french-fries.  He would ask what I was making and then refuse to eat.  He would take one bite of vegetable lasagna, spit it out and cough as though the lasagna were eating him.  I tried not to get discouraged.  I announced the menu night after night to Victor’s disgust.  I often joked that we were having Victor’s favorite when I prepared delicacies such as Brussels sprouts.  Victor was not amused.

Despite my persistence with Victor, I began to think that he had passed me off as he had so many new staff.  One evening however, as I was cleaning the dining area after dinner, Victor did something out of the ordinary.  4He asked to remain in the dining area instead of watching television or visiting his girlfriend, Cindy, as he normally did.  He did not give a reason for the change of routine.

I worked as usual until I noticed that Victor was staring at me. Whenever I lifted my eyes from the push broom he was there, studying my every move.  After several minutes, I stopped sweeping and leaned with both hands on the broom handle.  I stared back at Victor who, when not talking, eating or yawning, would rest his tongue between his pursed lips as if protruding the tongue in childish mockery.

We maintained eye contact for several seconds as though forcing one-another to blink.  Finally I accepted defeat and turned my eyes to the ever-growing heap of dropped and discarded dinner.

Just as my left hand slid to the middle of the broom and my eyes met the floor, Victor spoke, “EEhy.”  I returned to my previous position, eyeing Victor once again.  I remained silent in expectation of profound questions or comments that would end our relationship of indifference and cement the bond that I had hoped to form with Victor.

Victor licked his lips, retracted the tongue…….”Wah you doin?” was the question. Disappointed with the simplicity of the query I answered, “Sweeping the floor.”  The tongue protruded and then retracted once again. “Where you live?”

“I live in an apartment over near the college where I go to school.”  Again the tongue.  “Wah you doin after work?”  he asked. “Well I have some homework to do and I might watch the end of the football game if I have time.”   The tongue found its resting place once again.

I waited for more questions, but I received only silence and a quizzical stare.  Twenty seconds passed until the next words flew from Victor’s lips.  I was sure that the all-important questions were coming.  The tongue retracted.  “Marlene!  I wanna watch TV!”   And that was it. So ended our first non-complaining, non-food-related conversation.

The all-important questions would not come that night.  Nor would they ever come during my more than three years of cooking at the residence.  They were not necessary.   My treasure was unearthed.  I had taken our first conversation for granted as trivial, or simple yet it had meant so much more to Victor.  From that night on, Victor waited in the dining room after dinner.  Our conversations were never more than our first conversation yet they were all just as important.

The treasure revealed itself over time as the universal bond that is the basic human need for contact, normalcy and the knowledge or sense that someone understands and cares about us.  The bond is present regardless of IQ, race, gender or socioeconomic status.   These ideas may seem obvious to the reader, but at this point in my life I was unable to comprehend them.  The longer I worked in the field however, the more I realized just how much of human behavior, my own  included, is driven by the need for understanding and normalcy.

I realized that Victor was not indifferent to my presence.  He was careful.  He had been hurt too many times before and while he may have wanted my friendship, he would not commit himself before he was certain of my commitment.  In spite of all that I had lost prior to my work in the special needs field; I felt for the first time that I had so much to give.

I continued to cook for another three years after this night.  I began working one on one with the clients in addition to cooking.  After graduating from college, I was promoted to Residential Instructor.  I now manage my own group home for the same company.

Author Unknown

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

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