Posts tagged autism
Karen’s Survivor Story
Feb 27th
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
SPECIAL THANKS: AUTISM SPECTRUM QUARTERLY
Feb 9th
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.
Battle Scars, Perfection and Autism
Jan 4th
My sister wrote something today in her blog that struck me:
As I was packing away my Christmas stuff this year, it dawned on me that the same nutcrackers I have been putting away for years were still broken, and no one was ever going to fix them. As my late husband, Larry, and I celebrated our last Christmas together in 2008, I mentioned their ‘broken’ state to Larry. I said we should get rid of them and get new ones. He said the nutcrackers were perfect. “Those are battle scars”, he said. I said ‘okay, whatever’. He said they guard us every night during the Christmas season, while we are asleep. They are up all night in battle sometimes even during the day, while we’re out. Of course, this was his sense of humor. He had a way with humor, unlike anyone else I had ever known. The nutcrackers’ broken and missing pieces were ‘battle scars’. Nutcrackers without battle scars are useless and lazy and don’t serve any purpose at all.
What an awakening, as I thought about this yesterday, gathering them up for another year’s slumber until next Christmas. Remembering this story brought a tear to my eye, as I thought about Larry’s own battle scars before he passed away, and our 21 years together. He was rough around the edges, just like those nutcrackers. He had physical battle scars, emotional and psychological ones too. But there was never a day that went by that he didn’t have the same protective demeanor that he attributed to those nutcrackers. Every day, was a day of watching out for his family and myself the very best that he could. It’s not a sword or a fist fight – it’s an attitude – a commitment to ‘be there’ come rain or shine for the people you love. Larry was my guard and protector on Earth while he was here. He was with me and for me every step of the way, and I will never forget that. Through all of his rough edges, deep inside he was a person of pure and perfect love. Sometimes, I think it’s because of his rough edges and battle scars that he grew a deeper sense of love than those that may have never encountered obstacles.
It would take the heart of a soldier to see the significance and purpose of ‘battle scars’ on a Christmas nutcracker.
After reading this story that my sister Susan wrote, I started thinking about my own life and how the ‘imperfections’ we may see in the people we love really aren’t imperfections at all. They are merely remnants of journeys along the way in life. It’s as if someone just painted a giant wall with lots of colors and, as you’re walking down the street you bump into it occasionally. Then, you stand back and notice how many colors are all over you. You weren’t born that way – you acquired them along your path.
This New Year, let’s look at our own lives that way and the children with autism in our lives. They have bumps, bruises and many colors, and rough edges. Aside from those ‘rough’ edges, the love is there nevertheless, with a lifetime of love to come. Be patient. The battle scars, wall colors (or whatever you may call them) may look funny or be bumpy, but just embrace them and love the person inside.
Eustacia Cutler – Temple Grandin’s Mom
Dec 27th
Eustacia Cutler is the mother of four children. Her oldest child is Temple Grandin, who has become a successful person with autism in the world today. Eustacia is a graduate of Harvard. She has been a band singer at the Pierre Hotel, New York City, performed and written for theatre and cabaret, and written for major television networks.
Her current book, “A Thorn in My Pocket” describes raising Temple in the conservative world of the 1950′s.
Eustacia was one of the first to tread new water as she overcame the difficulties of “challenging the system”. Like every parent and teacher, she wanted the best for her child. She understands the myth, reality, angst, and guilt a family experiences in society. She is where you will be in the future: looking back on the things you did to help you.
When the “system” is not meeting the needs of your child, you must be creative and design your own program. Piece by piece, you and your child can develop a meaningful, interrelated reality.
Hear Eustacia Cutler speak at this extraordinary upcoming event, the 3rd Autism Vancouver Biennial Congress 2011, April 8 – 9, 2011, Vancouver BC. Register early and Reserve your seat today!
Doreen Granpeesheh, PhD, BCBA – Founder and Executive Director for C.A.R.D.
Dec 27th
Dr. Granpeesheh is a must see! She will be speaking at the 3rd Autism Vancouver Biennial Congress 2011, in Vancouver, BC April 8 – 9, 2011.
Doreen Granpeesheh, PhD, BCBA is the Founder and Executive Director of the Center for Autism and Related Disorders, Inc. (CARD) and President of the Board of Autism Care and Treatment Today (ACT Today!). Dr. Granpeesheh received her Ph.D. in Psychology from UCLA and is licensed by the Medical Board of California, the Texas State Board of Psychologists and the Arizona State Board of Psychologist Examiners.
Dr. Granpeesheh holds a Certificate of Professional Qualification in Psychology from the Association of State and Provincial Psychology Boards, is a Board Certified Behavior Analyst (BCBA) and has been providing behavioral therapy since 1979. In 1990, Dr. Granpeesheh founded the Center for Autism and Related Disorders, Inc. (CARD) and through its 20 offices world wide, she has provided diagnosis, assessment and behavioral treatment for thousands of children with autism and related disorders.
In 2005, Dr. Granpeesheh founded ACT Today!, a non-profit organization that provides support and funding to families of children with Autism. In addition, Dr. Granpeesheh is also a principle member of the Thoughtful House Center for Children, a charity organization that provides behavioral services in collaboration with medical treatment and research.
Dr. Granpeesheh is member of the Defeat Autism Now Executive Council, on the Scientific Advisory Board of the US Autism and Asperger’s Association and First Vice Chair of the National Board of Directors of the Autism Society of America. Dr. Granpeesheh is also the executive director and co-producer of the award-winning documentary, RECOVERED: Journeys Through the Autism Spectrum and Back.
Register today! Don’t miss Dr. Doreen Granpeesheh, along with over 18 more autism experts at the Autism Vancouver Biennial Congress 2011,
Presence: The Best Holiday Present!
Dec 23rd
Much love and joy and MAGIC for the holiday season.
Lovingly,
Karen Simmons
Founder & CEO Autism Today
Chicken Soup for the Soul, Children with Special Needs
Lost My Best Cheerleader!
Dec 20th
You may be aware that I’ve been distracted and less responsive this fall and especially since Christmas is around the corner I want to tell you why. It’s because I lost the best cheerleader I`ve ever had in my entire life, my mom!
I found out about my mom’s passing at the exact moment that the movie “Temple Grandin, based on the life of Dr. Temple Grandin received the Emmys for the acting of Claire Dane and others and Temple grabbed the microphone on stage to ask her lovely mother, Eustacia, to stand up and be recognized.
My sister Susan was the one who called me to tell me that my mother had suddenly passed away from a stroke and I do believe I was in shock! At that moment I realized that I will never have my moment of asking my mom to stand up and be recognized like Temple did, so maybe we can all ask Eustacia to be `the mom“ that stands up for the other moms that can’t be there.
The phone which was glued to my head went completely dead during this time of the Emmy’s and I completely forgot it was there as I was numb from the news. It was almost like Mom was saying from Heaven, I want you to enjoy your friend, Temple Grandin`s fine moment in the spotlight as she hugged Claire Danes! Hugs are unusual for Temple. I also reflected that as an individual, the reason I do what I do is due to moms passion.
Mom would always tell me “Karen, you can do whatever you want to do as long as you set your mind to it”. It’s because of her that I pursue my work with relentless persistence never giving up no matter what gets in the way. It was also very coincidental that this Emmy celebration was all about `What did your mother want you to be when you grew up’. They would ask the stars that question and show the stories in little vignettes.
I still can`t believe she`s gone. Mom was in everything that I do, she even drew some of the pictures in my first book, Little Rainman: Autism Through The Eyes of a Child. She was truly my biggest cheerleader and fan and I feel her presence still there shining down from above as I write this blog. To get a sense of my mom (and maybe even yours) I will share the poem I wrote for her…
MITZI MY MOM
She never knew a stranger, she always knew a friend
Her heart of gold she shared with you and presents she would send!
Every moment a story shared with love and passion true
By my side when I almost died, only to start my life anew
When mother said “now girls”, we knew we were in trouble
She’d holler out, “you kids clean up right now and on the double!”
She traveled the world from Hong Kong to Beirut, and with Bunny painted the town red
Operas, musicals, shopping, fancy clothes, always tasteful in what she did and said!
When she tried something really good, it was simply “the best she’d ever tasted”
And boy was she frugal you could always count on her for not a penny wasted!
An artist to her core, she’d say “oh, look at the trees and flowers”
She’d talk about her times and memories and we’d listen for many hours
She never knew a stranger, she always knew a friend
Her water colors are still filled with every color in the wind
Everything always had a place she’d say Karen “put it back where you found it”
Of course as kids when she said clean up, we’d say when we get around to it
She had a saying for everything like “I feel more like I do than I did”
If you can’t say something nice, don’t say anything at all, I hear her recite now in my head!
She always had her “face on” and was impeccably dressed
Perfection was her middle name and she always looked her best.
She was lovingness, please and thank you’s and her home was someplace special
Like a dream-world keeping things clean, “don’t put it down, put it up” all very beneficial
Somehow I never thought she’d leave us, and we’ll cherish her forever
She taught us all how to love and feel and was a mother like no other
Remembering her with wonderment like a connoisseur of dark chocolate
A real lady with all the class in the world, she’d want to be remembered like that!
She never knew a stranger, she always knew a friend
Her memory will live on in our souls, and over time our hearts will mend
Your essence will live on in our being and you will leave us…… never
We will all remember you Mitzi, love and butterfly kisses….. forever!
Before all this happened I had asked our Autism Today friends to submit articles to share with our readers. We received an overwhelming amount of articles. Then I had to fly to Alabama to tend to my mother’s affairs. I don’t want anyone to think I dropped the ball or forgot about them as we still have all the articles ready to post to my site waiting on my computer and they are deeply appreciated so I want to thank each and every one of you that sent me articles for sending them. Because of all that’s happened, we’ve decided to put them into the new website we are launching in November – December this year. If you were one of the folks that submitted an article please watch for it on the new “launch” of Autism Today
Since I know so many of us are baby boomers and you may have lost someone very special in your heart recently as well. To you I send my condolences. Moms are everything, aren’t they? They nurture us when we are sick, they love us and care for us unconditionally. Temple’s birthday was on August 29th and my mother passed away on that very same day. I will continue to do whatever it takes to bring her loving passion through me to the cause of autism related disorders.
Much love and warm wishes! Have a happy holiday season. Your loved ones would want it to be that way.
Love,
Karen Simmons
Autism Asperger’s Friendship Society of Calgary
Dec 8th
One of the great pleasures of doing our Autism Today conferences is the opportunity they bring to partner with leaders and groups in our host communities. You never know what good things will come from these grassroots collaborations.
A great example from Calgary: The aptly named Autism and Aspergers Friendship Society of Calgary. In exchange for free registrations, Executive Director Dean Svoboda and his excellent team volunteered to visit Calgary schools and distribute fliers and posters to promote the conference.
They contributed so much to our program that we decided to offer them a booth at “Keys to the Treasure Chest,” where they promoted the artwork of Society member Shawn Belanger. Shawn’s work caught the eye of Dr. Temple Grandin herself. Dr. Grandin visited with the group at length after her presentation – and once again, some valuable new friendships were born. Karen liked Shawn’s artwork so well, she asked author Debbie Hosseini to add his work into our soon-to-be-released “Artism: The Art of Autism”.
Today’s Insight on Autism: Can Food Sabotage Your Child’s Progress?
Sep 28th
We love reading these articles and sharing them with our readers. There are so many ways people are dealing with sensitivities for those with autism and ADD/ADHD. Thank you so much Dr. Dantini for submitting your article!
Sincerely,
Karen Simmons
Can Food Sabotage Your Child’s Progress?
by Dr. Daniel Dantini, MD
In the mid 1980s, I conducted a study on food sensitivities and their effects on ADD/ADHD symptoms. After testing the patient for delayed food sensitivities, the study consisted of two phases:
The Avoidance Phase, in which the offending foods are avoided for six weeks.
The Challenge Phase, in which the excluded foods are slowly added back into the diet. The reason for the challenge phase is to prove that the foods identified by the test are actually causing specific symptoms.
Included in this particular study, was an autistic child around 2 years old. During the avoidance phase when the harmful foods were removed from this child’s diet, ALL of the autistic symptoms disappeared.
With such dramatic results, the parents withdrew the child from the study before the challenge phase. They not only feared that challenging the foods back into the child’s diet would cause the symptoms to return, but that they would not be able to reverse them again.
This was the first autistic child I had ever encountered. I consulted my dad who had been a General Practitioner for 50 years, and he had never seen a single case. As an otolaryngologist, I didn’t see many cases of autism.
However, just before I moved from Pittsburgh to Florida, I saw the son of a nurse at the hospital who had just been diagnosed with Autism. After I tested him for delayed food sensitivities, I instructed his mother to have him avoid the harmful foods. 16 years later, he and his mother stopped by my office. He had continued the protocol and was preparing for college. As far as I could tell, he was normal. The only unusual remnant of his autism was that he couldn’t lie.
In Florida, I started seeing more and more patients on the Autistic Spectrum. I have been watching results in my own practice and getting feedback from DAN doctors and others who regularly treat Autism. What I have found is that, in delayed food sensitivity, immune complex plays a vital role in the progression of autism. And the younger the child we treat, the better the results.
Certainly there are genetic predispositions that affect the population, but since it was rare before the 1980s, there is obviously something else, which is drastically contributing to, if not causing the huge increase in cases.
Allergic load and an over-stimulated immune system seem to me to be major culprits. Allergic load is the amount of allergens the body can successfully tolerate. When we’re exposed to more than we can handle, the immune system reacts badly. In the case of autism, the brain is affected during its development. By decreasing the allergic load, the immune system is better able to handle any other onslaughts it may encounter. Since food is such a large portion of the potential allergic load, it makes sense to test children early for both immediate AND delayed food sensitivities and eliminate the foods to which they react. This increases the chance that the brain can develop normally.
Autism Tomorrow…
Sep 24th
As of March 2010, the Center for Disease Control (CDC) website reports that between 1 in 90 and 1 in 110 children are diagnosed with autism, resulting in millions of people who need information and services.
As children grow, parents ask many important questions, such as, “What will my child do? How can my child function in the real world? How will my child communicate?”
Since the autism epidemic first began in the mid-eighties, hundreds of thousands of families now have a child reaching adulthood, without a comprehensive resource, to help make that transition.
The book Autism Tomorrow is both a life guide, with solutions, and a warm, heart-felt combination of two families’ stories about their sons with autism. My son, Jonny, is high functioning, while Bill’s son, Chris, requires a great deal of care and attention. Through their stories, along with the practical tips from all the authors, you will learn how to help your child build a solid and safe future.
As you read on, you’ll discover this is a book of hope and understanding. Autism Tomorrow provides solutions, makes you laugh and cry, and gives you a roadmap for your child’s future, no matter where he is on the spectrum. This is for parents, educators, caretakers, first responders, people around you, and all people with autism. It has practical lists of things to do and not to do, beginning when your child is young, and later, going out into the world. This includes school, special training, medications, classes, post-secondary education, jobs, and families.
Because we learn from each other in the world that revolves around a child with autism, we want to share what we have learned (often the hard way), about working with schools, community, and neighbors. Everything we do benefits you, and your child with autism.
Everyday life is hard, and some of the most difficult decisions relate to how to make plans for your child’s care whether you are around or not. You’ll want to know who will care for your child, where she will live, and how the life style is funded? You’ll also want to know more about what your child’s daily life will be like, whether he or she can live independently, and what kinds of documentation you’ll need to implement today to ensure your child’s best interests.
Facing each day not only brings new challenges, but also gives birth to the dawn of knowing you can take action and make decisions for a better future.
Karen Simmons, founder & CEO Autism Today




