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

77 Ways to say “Good Job”

Everyone likes positive pats on the back, recognition and acknowledgement for a job well done.  It’s especially vital when raising a child with an autism spectrum disorder.  We should be mindful that sometimes, with our children with ASDs, the label we use can be the opposite of a back-pat.

When I founded Autism Today, I asked my sister Susan to create a logo that would be overwhelmingly positive.  I asked her to use a star, like the gold star we all loved to get from our teachers in school, instead of the puzzle piece.  Autism Today is about celebrating the gifts of our children on the spectrum, not focusing on what we all know and understand to be real challenges.  There’s no argument autism is real and, for those without the necessary resources, overwhelming.  But all of us, parents and children with ASDs, must focus on the unique and often amazing attributes – the positive side – of ASDs, first to cope, next to survive, and, finally, to thrive.  I raised my son Jonny to think of his autism-related skills as wonderful gifts.  When he was born, I could never have imagined how much fulfillment and fun Jonny would bring into our lives as a family.  Focusing on his ASD as a gift, rich with possibilities, was an important aspect of that journey.

I remember people challenging me that no one would know we were about autism since we didn’t use the puzzle piece like everyone else.  My thinking has always and will always be to accentuate the positives and eliminate the negatives.  That old Johnny Mercer tune was a great favorite of my beloved father, Jack Simmons, a World War II veteran, pilot and aerospace engineer.  Attitude got him and many hundreds of thousands of military folk through a terrible time in history.  It can be easy to be overwhelmed by the trials in our lives raising a child on the spectrum.  But inside that child is a treasure chest of possibility.  It is our duty, those of us who know and love these children, to find the gems within – and to do that, we must always, every day, focus on unlocking those gifts.  To do it, we must always accentuate the positive!

My dear friend, Stephen Shore and I were talking about how positives are so good for our kids with autism, especially when accompanied with a red skittle, and sometimes teachers can get carried away with saying “good job” to often so we came up with 77 ways to say good job without being redundant.  I thought I would share them with you all.  Its rather cute.  Enjoy and don’t forget to get the red skittles!

77 ways to say “GOOD JOB”

  1. SUPER
  2. That’s RIGHT
  3. That’s good
  4. GOOD WORK
  5. Perfect one
  6. You’ve just about got it
  7. THAT’S IT
  8. Now you’ve figured it out
  9. GREAT
  10. I knew you could do it
  11. Now you have it
  12. Good for you
  13. Couldn’t have done better myself
  14. That’s the right way to do it
  15. You did it that time
  16. You’re on the right track now
  17. Nice going
  18. WOW
  19. That’s the way
  20. Keep up the good work
  21. TERRIFIC
  22. That’s the way to do it
  23. SENSATIONAL
  24. EXCELLENT
  25. PERFECT
  26. Much better
  27. WONDERFUL
  28. You did that very well
  29. FINE
  30. OUTSTANDING
  31. FANTASTIC
  32. TREMENDOUS
  33. That’s great
  34. Right on
  35. Superb
  36. Good remembering
  37. MARVELLOUS
  38. I like that
  39. Way to go
  40. Good thinking
  41. Good going
  42. Very good
  43. You remembered your sound
  44. That’s really nice
  45. Uh huh
  46. That’s a good one
  47. Yes
  48. I liked that sound
  49. Good
  50. Nice
  51. You’re really working hard today
  52. You are very good at this
  53. I’m happy to see you working so hard
  54. I’m proud of the way you’ve worked today
  55. You are doing much better today
  56. That’s the best you have ever done
  57. You’re doing a good job
  58. That’s quite an improvement
  59. You’re getting better every day
  60. That’s the best ever
  61. You must have been practicing
  62. You’re really going to town
  63. ow that’s what I call a fine job
  64. You’re really improving
  65. You’re doing beautifully
  66. You’ve got that down pat
  67. You certainly did well today
  68. Keep it up
  69. You did a lot of work today
  70. I’m very proud of you
  71. Now you have the hang of it
  72. You’re doing fine
  73. You are really learning a lot
  74. You out did yourself today
  75. You figured that out fast
  76. That kind of work makes me happy
  77. That’s it

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