Karen’s Survivor Story

Based on my book, Surrounded by Miracles

When I woke up, I couldn’t believe the pain shuddering through my entire body.  I wanted to die.  But wait, where was the baby?  I knew I was pregnant and that I had just delivered a beautiful baby boy, but he was nowhere in sight?  As I glanced out the window I noticed the grass was green, but just yesterday snow had covered every square inch of the landscape.  How could this be?  As my nurses came into focus, as well as the faces of my husband and mother, a story began to unfold as miraculous as those angels that surrounded me. They began to tell me what had happened during the past 57 days. I had almost died, was given a 1% chance to live, and was even read my last rites, but I had somehow managed to live again, against all odds.

Yes, I had survived, and so had my son.  But our real story was just beginning. My new baby, Alex, was soon to be diagnosed with ADHD.  His brother Jonathan, my two-and-a-half year-old, had just been diagnosed with autism.  It was a double-whammy!  Along with these two special boys and so many children like them, I had survived for a reason that would soon become very clear.

Where a life starts and why it starts again is the question every survivor faces. My story actually began fifty-three years ago when I was born in Oklahoma City.  Six years later our modest family of four packed up and moved to Florida where I grew up, from one hurricane season to the next.  This must be the reason for my attraction to high-energy people and my fearlessness, which both have served me well.
Dad had his own aeronautical engineering company, and mom worked for Pan Am Airlines, so my sister and I got to travel the world at an early age.  I loved the picturesque, quaint communities and the unique perspective others had in the many different cultures I visited.  I remember one woman in Ratnapura, Sri Lanka, being totally content sitting on top of a pile of rocks and breaking the big rocks into little rocks.  That’s what she did all day long and she had the biggest grin on her face I’d ever seen!  This is also where I fell in love with gemstones, which would become one of my callings in life.

After graduating from high school I attended college in north Florida and then decided to join the U.S. Air Force where I was stationed in Panama City, Florida. But four years was more than enough time for me to realize that the military life was not for me, so I received an honorable discharge and enrolled in the Gemological Institute of America in Santa Monica, California to become a Graduate Gemologist. Upon graduation I started a company in Bellevue Washington.  I later sold the company when, at age thirty-one, I met my current husband and moved to his home in Canada where I set up a jewelry store called The Gem Gallerie.

Jim and I had a wonderful life together. When I was younger, I would never have thought I wanted children, but at age thirty-four, Jim and I began our large, happy family.  We had our first three children in three consecutive years, one right after the other. I had my fourth child, Jonathan, when I was thirty-nine years old. He was rather quiet from the start, which was fine with me since I had three other kids in diapers.  I never noticed anything was different.  How could I?  Kim, Matt, and Christina consumed all of my energy, and I was still running the jewelry store.  Jonathan, I thought, was the perfect baby.  He would lie quietly in his crib, apparently perfectly content with the world.  In fact he didn’t really like to be held much.

It was my sister-in-law, Anna, who insisted that Jim and I get Jonathan evaluated for autism after she happened to listen to a radio talk show on the subject. How could I have known he was autistic?  I didn’t even know what autism was or what symptoms I should be looking for.  This was 1992 and autism was still relatively new territory, even for specialists.  It turned out that Jonathan did have autism and I was told to bring him back in a year, when he would be three-and-a-half years old.

For the next two years I met with special needs counselors and teachers who helped us work with Jonathan and I attended special needs conferences all across Canada.   We also went on to have our fifth child, Stephen, who was perfectly healthy. We thought we had faced our major hurdle in life and had come through it together as family.  We never guessed what lay ahead.

On April 18, 1994, I checked into the hospital for what I thought would be another routine childbirth like all the others. I was ready to deliver what would be our sixth and—though we didn’t know it at the time—last child. I had had a typical, healthy pregnancy.  I expected to go home in a couple of days and resume our busy, fun-filled life together.  But just minutes after Alex was born, I started to hemorrhage.  Nothing could be done to stop the bleeding.  What happened in the next 57 days was an unimaginable fight for my life. My family, friends, doctors, and nurses tried everything to pull me through—including a few “wild” schemes to get through to me in my comatose state.  It was ultimately just a few words from my husband that, unknown to him, gave me an ironclad will to live and to return to my family.  His words still ring in my ears.

“Don’t worry, honey.  I’ll take care of the kids”

After I woke up from my near-death experience, or “back-to-life experience” as I like to call it, one thing after another began to happen.  I had an internal drive and relentless passion first to write a book for my autistic son, Jonathan, called Little Rainman so he could understand his own autism as well as the people and the world around him.  I had six children at home at the time, so it’s not like I had extra time on my hands!  In fact every spare moment went into my urge to share my experiences with Jonathan with the world.

Shortly after the book was published I started a non-profit organization.  I would wake up in the middle of the night with visions of what this would be and the words “Key Enrichment for Exceptional Needs” would appear in my head.  In 1996 the KEEN Education Foundation was born as a driving force behind the effort to serve not only autism but also all types of special needs. Today, KEEN continues to support the educational goals of people with exceptionalities by providing them with the tools, research, and resources they need to thrive.
After this I started Autism Today, a small company that became the exclusive Canadian distributor for the worlds largest publisher of autism books and resources at the time.  I attended conferences and workshops to learn as much as I could about autism and special needs.  We’ve now grown from a simple one-computer, home-based business to an international organization that receives close to three million hits a month on our website, www.AutismToday.com.  Parents, educators, and more come to us for resources, coaching, and the latest news and articles from the top experts in the field. When baby Alex was diagnosed with ADHD, I expanded Autism Today to offer information and resources for the parents and educators of all special needs children.

Looking back now, I believe that breaking open my own rocks to see shining gems emerge from what look like only rough stones has always been part of what makes me smile as well–even today–only the stones have changed. What we experience when we are young and what we gravitate to as we grow is preparing us for everything life has in store for us.  Our new banner headline for Autism Today is “Shining New Light on Special Needs.”

As far as surviving, I suppose it is only in looking back at where we’ve been that those meaningful patterns start to emerge.  A new phase in my life is starting Healing Attitudes Seminars, which redefine perfection to share the secrets of the survivor’s story with others who have been there and for those who realize there will always be challenges in the road ahead.  In one way or another, we all are or at some point will be survivors. Here are just seven of the secrets I have learned and now develop and share with others through this program:
What doesn’t kill us makes us stronger–for a reason.

We all teach what we need to learn most, and by doing so everyone’s life is enhanced.
We all have special needs—some are just more obvious than others.  Do what you can to help others heal.
At any given moment, choose peace rather than conflict, love and acceptance rather than fear, and compassion and understanding rather than guilt and judgment.

Practice empathic listening and hearing your own inner, intuitive voices as well as  “true” voices of others.
Transcend all “types” of spirituality to embrace and teach the underlying message of love.
Bring others “up” to shine, acknowledging each person’s special gifts–the beauty and the hope.

I am certainly no angel, but I feel to the very depth of my being that I’m surrounded by miracles.

Karen Simmons is the parent of six children, ages 10 to 20, two of whom have special needs.  She is the founder and CEO of the internationally recognized Autism Today© non-profit organization, established in 1998, one of the world’s leading resources for all special needs, both online and at numerous conferences and events worldwide.

Karen is also the author of four celebrated books, including her soon to be re-released survivor’s story, Surrounded by Miracles.  Currently based in Alberta, Canada, Karen is a dual citizen of the U.S. and Canada, which gives her and her organization a uniquely expansive network with the special needs community worldwide. For more information about Karen’s Healing Attitudes around Special Needs Seminars, her books, and other special needs resources, please visit www.AutismToday.com

“Different Son” by Susan Werner – A Song about a Boy with Autism

Dear friends,

I launched Autism Today as an online community in 1998. For families touched by autism, and facing so many challenges already, the Internet is more than a tool, it is a lifeline, connecting us with other families, expertise and resources, inspiration, and yes, good old entertainment.

Every week, something truly magical pops up on YouTube.  This week we received a video by Susan Werner, a deeply personal song about autism, entitled Different Son. It is from her album,  Kicking the Beehive, which will be released March 1st.

Her agent says he fears Different Son will not get radio play, because it deals with too serious a subject.  But with one in 110 children born with the disorder in the US, we feel this is, for all the right reasons, music for all ears.

At Autism Today, we have a special love for artists.  Something magical happens when a child on the spectrum is moved to create art.  Properly cultivated, art can be the key to unlock exceptional gifts.

This is why we created the Artism series; and will soon publish Artism: The Art of Autism; and celebrate Autism Vancouver with a wonderful arts carnival.

So, today, instead of my usual blog, I decided it would be enough to share a beautiful song, about something we all are passionate about. Sometimes a picture — or a song — is worth a thousand words.

Have a lovely week!
Love,
Karen

NEW! Parents and Practitioners Employ web-based Skills™ for Children with Autism

NEW WEB-BASED Skills™ GIVES PARENTS AND PRACTITIONERS POWER TO RECOVER CHILDREN FROM AUTISM
By Daphne Plump

There are quite a few web-based tools on the market that are meant to treat children with autism and related disorders. And as with everything, another one just emerged – Skills™. But unlike all of the others, that shall remain nameless, Skills is not only a web-based tool for parents and practitioners, but gives committed users the power to recover children from autism….really.

The Center for Autism and Related Disorders (CARD), considered the world’s largest autism treatment center that provides state-of-the art therapy, recently released two web-based programs that go hand in hand, while at the same time, can work alone.  CARD eLearning™ and Skills™ provide training to parents and practitioners and allow the ability to assess and design treatment for children with autism and related disorders. Both of these programs are based on the principles of applied behavior analysis (ABA), which has been empirically proven to be the most effective autism treatment and is recommended by the American Academy of Pediatrics and the U.S. Surgeon General.

Journalists seeking access to the CARD e-Learning and Skills programs can obtain free passcodes by calling (877) 975-4559.

CARD eLearning (www.cardelearning.com) is a 40-hour online training course designed to facilitate effective intervention for children with autism by equipping users with foundational knowledge in ABA. The training consists of nine video-based training modules which feature online note taking, quizzes, a final exam and certificate of course completion.

Skills™ (www.skillsforautism.com) is an affordable program that provides everything that educators of children with autism need to assess a child, design a curriculum, and implement a comprehensive behavioral treatment program in one easily accessible location. Skills also provides charts and graphs that track treatment progress and the impact of various events (including other treatments and life events) on the child’s progress.

Check out Skills and CARD eLearning’s websites if you’d like to learn more about them. Or, you can call (877) 975-4559 for free passcodes to test drive these programs.

3rd Autism Biennial Congress 2011 – with Guest Star Kelly LeBrock

Assisting children with autism to practice appropriate behavior can be quite challenging, especially when unexpected environmental factors play a significant part. We can not always control what others do in public, like at school, the grocery store, or in a store, etc. But there are techniques that parents, educators, health professionals and literally anyone involved with children with autism can employ.

Educational interventions include sensory, communication, and social skills, and appropriate behavior. Knowing exactly how to employ these techniques is attainable, given the right resources.

The resources are the experts that make attaining this knowledge simple and crystal clear. People like Dr. Doreen Granpeesheh (founder of C.A.R.D), Dr. Stephen Shore, Keri Bowers, and many others are just a few of the experts (over 18 speakers) that will be speaking at the upcoming conference in Vancouver this April 7 – 9th, 2011!  This is THE conference to attend this year!

By doing so, you will gain valuable knowledge not only in learning behavioral strategies, but you will also learn about the best possible nutrition and up-to-date health interventions for optimal quality of life!  All of these elements are KEY for optimal success of your child with autism, as well as setting the stage for a happier, more harmonious family life!

Also, meet Jerry Newport, Stephen Shore, Sheila Wagner, Eustacia Cutler (Temple Grandin’s Mom), and Kelly LeBrock in person!

Visit http://autismvancouver.com/ for details!

I gave a rose to a guy!

Okay, he was a blind guy about 60 that came into my sons Jazz Club, “Rusty Reeds” tonight.  It was Valentines Day but most importantly, the rose which was given to me by the bartender needed a better home since I probably would’ve taken it home and let it wilt.  You see, this man we struck up a conversation with was without a home, actually.  As I put my fear aside and delved into what brought him to this stage in his life I learned a great deal.

We all get stuck in our lives for whatever reason.  His was because even though he used to manage 350 people in the Oilfields of Northwest Territories Canada and he lost all hope when his wife and children were killed in a tragic car accident.  I can’t even imagine how that would affect my life.  He couldn’t talk about it even after 30 years.  Now he lives in a graveyard sleeping on a total of 2 matts, 2 sleeping bags to keep warm surrounded by a cardboard box with two candles on either side.  After buying him a beer I thought it would be nice for him to have a flower to put in his little mini tent.  We talked about how we all become used to what we grow up with which was why he was more comfortable sleeping in colder environments.  Since I grew up in Florida the idea of sleeping outside when its 40 below zero isn’t remotely imaginable!

We can all find circumstances around us that are both better and certainly ones that are worse than we have.  I find it good to keep perspective in all that I do so I can appreciate all that I have and also not to be envious of those who have more.  It helps me with my special needs kids and every aspect of my life.  I hope you do the same.  Happy Valentines Day!  Enjoy the roses in your life!

SPECIAL THANKS: AUTISM SPECTRUM QUARTERLY

Thank you Diana Twachtman-Cullen & Autism Spectrum Quarterly, for your review of Autism Tomorrow in ASQ! Bill Davis, my co-author of Autism Tomorrow, our manual for the transition to adulthood, and I our very honored and grateful to Diana for her review of our book, Autism Tomorrow in the Autism Spectrum Quarterly’s Spring 2011 Issue.  We are especially pleased to be featured in the same issue with the winner of ASQ’s 6th Annual “Kids on the Cover” Contest.  For more info or to subscribe, please go to www.autismmagazine.com or www.ASQuarterly.com.  For info about Autism Tomorrow, please visit us at www.autismtomorrow.com.

Autism Spectrum Quarterly: You’ll find the best of both worlds in the one and only autism MAGAJOURNAL® – Human-interest and how-to articles, AND the latest, bottom-line information on important findings from research studies.  The February issue features articles on typical siblings’ attitudes toward their brothers and sisters with ASD; iPad use in the preschool classroom; a new generation of positive behavioral support; and lots of information on adolescents and young adults, including: guiding young people with ASD through the maze of social media and preparing them for life after high school. You’ll also find ASQ’s editors’ picks for exceptional resources, such as Dr. Twachtman-Cullen’s review of Autism Tomorrow, the book that will ensure that all of your child’s “todays” prepare him or her for tomorrow. ASQ is also available in select Barnes & Noble and Borders Bookstores.

Will you be my Valentine – in Vancouver?

Usually, in Karen’s Corner, I try to blog about something personal, some funny anecdote or experience that offers an insight about autism.  But I’m so excited about the line-up at Autism Vancouver I can’t help but talk about the conference.

We are so lucky to welcome Hollywood leading lady Kelly LeBrock, star of such romantic comedies as Woman in Red and Weird Science, as our Honorary Host.  (We are highlighting her in this week’s Speaker Profile, below.)  Kelly is a dedicated advocate who believes deeply in whole-health strategies for treating autism and related disorders.  Her brother Harold struggled with Asperger’s before his death.

Valentine’s Day is coming up.  Why not consider joining us for The Women in Red festivities at Autism Vancouver 2011?  Borrowing from the title of Kelly’s movie, our Women in Red activities will honor autism moms everywhere, their giant hearts, their limitless energy, and their passion for helping their children grow and achieve their full potential.  Red is the color of love.  Vancouver is a place to celebrate with other autism moms and families.  Dads are welcome too!

In addition to Kelly LeBrock, we have been fortunate to enlist other artists active in the autism community to participate in Autism Vancouver and support related social activities.  These include Keri Bowers, founder of Normal Films, www.normalfilms.com, and director and producer of such independent films as Normal People Scare Me, with her son, Taylor Cross and many others, and The Sandwich Kid, and Elaine Hall, a.k.a., Coach E, the Hollywood child acting coach who founded The Miracle Project, www.themiracleproject.com, subject of the Emmy Award-winning movie Autism: The Movie.

So… Will you be my Valentine?  I look forward to seeing you in Vancouver.

Love,
Karen

Every Child’s a Star: The story behind the Autism Today logo

Have I ever told you the story of the Autism Today logo?  When I first
launched my company in 1998, I looked around our community, at the leading
groups, government initiatives, schools etc. to see how they were branding
themselves.  Even then, the puzzle piece had emerged as a powerful symbol
for our community.  To me, the beauty of the puzzle piece is its symbolic
merging of two realities: 1) the struggle of every child with autism, and
his or her family, of not fitting in, and 2) the certainty that each child –
each of these beautiful puzzle pieces – has his or her has its place in
society, and his or her very own role to play.  But as powerful as the
puzzle piece is, it did not symbolize what I hoped for for my own son,
Johnny, whom we had received an autism diagnosis in 1992.

As an optimist, and fiercely protective mom, I wanted a symbol of hope for
my baby.  I didn’t want my kid to grow up walking around with a puzzle
piece, even an imaginary one, stamped on his forehead.  As a mom, I wanted
all my kids, every morning, to leave the house feeling like you do when you
are in class and the teacher gives you a gold star.   I wanted every person
who met him, every teacher, caregiver, professional, parent or classmate to
see that gold star, in his attitude, his spirit, his gifts – yes, even in
his so-called disability.  I wanted them to see everything beautiful, all
the gifts.

So today, it’s the Autism Today star is what you see today on our website,
newsletter, and everything we publish. Take a look at it.  Imagine it as the

symbol of everything wonderful in your own child.  When my graphic artist
first showed it to me, I smiled and knew immediately what I was
looking at.  I saw the shape of my little boy, running, arms outstretched,
both containing and pursuing a brightly shining future.  It even has a
little tummy!

Sometimes I know my sunny outlook seems bullheaded.  Sometimes it annoys
people, who feel it’s more important to be realistic, and not send our kids
out with too dreamy a view of things.  But, as the kids say, that’s how I
roll.  Attitude is everything in life.  (“Accentuate the Positive/Eliminate
the Negative,” as my beloved dad, Jack Simmons, used to say!)

Don’t get me wrong: We do need to focus on the challenges of our children
and adults with  autism, especially those severely disabled by ASDs.  I
applaud, embrace and endorse the outstanding groups who fight this fight
every day.  I am proud to belong in their number as an advocate, a forum and
an autism mom.  They do what they do so well, and much better than I ever
could.  If I have a contribution to make, it’s to be the best doggone
cheerleader our kids have, and to help others, especially our Autism Today
members and friends, do the same, and more of it!!

With love,

Karen

Autism One – Thank You! – Februry 2, 2011

Thank you, Autism One

Three cheers for Autism One for the exciting and creative work they are doing on their technology platform and their social media effort. At Autism Today, we like to keep an eye on best practices and try to emulate folks who do things right. We admire Rob Wickens’ work on the Autism One storefront, and the groups interactions and initiatives through social media platforms like Facebook and Twitter. And with wonderful sponsors like OxyHealth, Autism One is offering a great program in Lombard, Illinois, May 25 – 29, 2011, The Westin Hotel, Lombard, Illinois “Autism Recovery on a Budget: Empowering Parents.” Check it out at www.autismone.org.

Monarch House Autism Centre of Vancouver – Feb, 2, 2011

Thank you Megen Pauluk and everyone at Monarch House for signing up as an Exhibitor at Autism Vancouver. At Autism Today, we especially prize our community-level relationships with respected, local providers of services to the autism community in our host cities.  Clinical Director Chelsea Ganam, previously a Senior Behaviour Consultant with the Province of BC’s Ministry of Children and Family Development (MCFD), has extensive experience developing and advising program policy for BC’s Provincial Autism Programs, creating expert panels within BC and across Canada, as well as participating as an advisory member to prominent ASD organizations in the field.  Her team of behavior, speech and occupational experts offer a comprehensive set of intervention options.  We admire your work and look forward to your participation at Autism Vancouver.  For more about Monarch House Autism Centre of Vancouver, see: www.monarchhouse.ca.

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1 in
45

Diagnosed with Autism

Over
100

Autism Diagnosis a Day

Costs
238

Billion per Year

Boys are
4

Times More at Risk