Tag Archive | autism

What Are Soul Steps?

“What exactly are Soul Steps?” asked the reporter, as I struggled to put it into an easy to understand context.

“I guess you could call them life lessons,” I replied, “like when life throws you a curveball but you come out of it with wisdom that can only be gained through life experience.”

I then went on to tell him the story of how my son’s diagnosis of autism gave me one of those hard earned life lessons, which is Soul Step 42 in my new book,

Here is a sneak peek into the book:

Excerpt from Soul Step 42: Acceptance

When my youngest son was diagnosed with autism at the age of three, I suffered a loss. While Ben was still physically with me, the hopes and dreams I had for his future were suddenly taken from me. Although I did not realize it at the time, in retrospect I can see how I went through a text book case of the stages of grieving.

Finally, after months of intense sadness and feelings of loss, came acceptance. It came to me one night as I was praying my nightly prayer for my three children to be safe, healthy, and happy. It suddenly dawned on me that God was still answering my prayers. Ben was safe, he was healthy, and he was happy. Being given the label of autism did not make him cold or unloving. Ben was still the same sweet, kind, loving, smart, adorable little boy that he was before his diagnosis. I knew that there would be challenges ahead for both of us, but we would face these challenges together. I finally accepted his autism and only then was I at peace.

Natalie, Veronica, and I are three “ordinary” women who have lived through extraordinary life experiences which we share with you in our new book, Collectively, we have lived through cancer, death of loved ones, depression, anxiety, divorce, betrayal, suffering and loss. But we came through it stronger and wiser than we ever imagined we could, and now we want to share our stories with YOU. In Soul Steps, you will read our personal life stories, but the real beauty of this book is that it is not really about us, it is about YOU! At the end of each chapter you, the reader, are guided to uncover the soul lessons of your life as you put each soul step into action.

to learn more about the book that has been ranked one of the top 3 “Hot new releases” for spiritual books on Amazon.ca!

Where Do I Take My Son To Pee????

It seems that I have caused quite a stir on Facebook with my most recent post getting approximately 1500 comments and over 300 shares in less than 24 hours!  The post was short, so I would like to take the time to clarify exactly what happened that upset me.   Ben was taking swimming lessons at the Aquarena from the Autism Society.  He requires assistance with changing his clothes and with toileting.  While there is a change room for people with special needs, when I asked for directions to the family bathroom, I was told by two staff members that they do not have a family or a  gender neutral bathroom.   So, I had to choose between taking him to the men’s or the women’s and I chose the latter.

This was not something new to me! I am a single parent and Ben loves to be out and about in the community, shopping and going to restaurants.  Many places are not equipped for people who have an attendant of a different gender with them. Up until that point, it did not cause a dilemma for me.  Sure, I got some strange looks taking a boy into the ladies room, but in my eyes, he is my baby and it is no big deal to take your little boy to the bathroom with you.

That was what I thought until two days ago when I walked into the ladies washroom at the Aquarena.  Sharing this small, two stalled space with 12 year old Ben, was a girl about his age.  Needless to say, this adolescent girl felt uncomfortable with this set up, as did I.  It certainly was not great for Ben’s dignity either.   It was then that I realized he is not a little boy anymore.  He is an adolescent boy, who is quite big for his age, taking a size 10 in men’s shoes already.   He is quickly growing into a man.  How will it look when I, a single mom and his primary caregiver, have to take him to the ladies bathroom then?   If he has a respite worker, it will most likely be a female as the majority are.   As far as I am concerned, Ben’s basic human right to be able to access a toilet has been violated.  Many of the people who responded to my post have  been in the same situation, so this is much bigger than me and Ben.  Not just people with autism, but people with physical disabilities or disorders such as Alzheimers may also require assistance with toileting.  It is an issue that needs to be brought to light.  It makes me nervous to think about how I will proceed with this, but something must be done, and it looks like I will be the one to start the ball rolling. I hope my angels got my back on this one!!!  (If you would like to sign my petition, please go to my  )

In addition to bathroom accessibility for Ben, here are some other things that would make for a more autism friendly world:

Autism Friendly Hotels:  I was once told by hotel management that if we didn’t keep the noise down, we would be asked to leave the hotel.  The noise he was referring to was Ben’s stimming: loud vocalizations and jumping.  These behaviors, although disruptive, are necessary for his sensory integration. The picture below was taken at Canada’s first autism friendly hotel, located in Port Aux Basques, NL.   It provides a space for children on the spectrum to meet their sensory needs.  It also has a specific room for individuals with ASD and their families.  Nothing in the suite is movable or can be thrown should a guest become distressed.  In an autism friendly world, all hotels would have such a room, and would be more tolerant of autistic behaviors such as stimming.

Photo credit: golfnews.ca

Autism Friendly Movie Theatres:  A friend of mine was once asked to leave a movie theatre because her son’s vocal stimming was disturbing to the other movie goers.  Some movie theatres offer mommy and baby matinees where crying is ok.  I would urge all movie theatres to offer this service and to extend the invitation to children with autism and other special needs.  Rather than call it a “mommy and baby matinee,  a more appropriate name might be “An Inclusive Movie Matinee”.

Autism Friendly Airports:  It can be difficult traveling alone when you have a child with autism, as Ben’s dad once learned when he disappeared at Heathrow Airport!   Wouldn’t it be great if airport personnel provided assistance to families who are traveling with a person with ASD, in the same way that they support people with physical disabilities.

Autism Friendly Stores:   When Ben was younger, it was very difficult for him to wait in line, especially at grocery stores while he was anticipating his treat!  When I took my kids to Disney World, we got a special pass which allowed not only Ben, but his whole entourage (mom and siblings) to go to the front of the line for all rides and attractions.  How nice would it be if kids with autism got a special pass to go to the front of the line at shopping centers.  Hey, if Disney can do it, then why not Walmart?

Autism Friendly Restaurants:  Imagine a world in which restaurants designated a table, away from the main traffic area, with a sign that says “Autism Friendly Table.”  Then if the child was having a meltdown because for example, his chicken nuggets were touching his fries, people would know at a glance that the child has autism, and is not just “being a brat” as is too often assumed.

Autism Friendly Hair Salons:  Many children with autism resist getting their hair cut, which can cause quite a scene at hair salons.  Wouldn’t’ it be great if hair salons offered a private room, with dim lights and soft music to help soothe the senses of people with ASD, while preserving their dignity?

Autism Friendly Parades:   I am happy to say, that in my home town of Burin, Newfoundland, last year’s Christmas parade was autism friendly!  There was a stretch of the parade which was quiet, no sirens or loud music, for people on the spectrum who are sensitive to loud noises.  In an autism friendly world, all towns and cities would adopt this practice.

Autism Friendly People:  In an ideal world, not only would businesses be more accommodating to people with autism, but so too would people.   However, that can only happen if we raise understanding and acceptance of the disorder.   The time for awareness has passed.  People are aware that autism exists, yet many still react in a very negative way to autistic behaviors such as stimming and meltdowns.  Tolerance.  Understanding.  Empathy.  That is what an autism friendly world would look like!

As my friend, Kathy Hickman pointed out to me, these services would benefit not only people with autism, but people with other exceptionalities as well.  Like the hotel in Port Aux Basques, whose story went national, it would also be a smart business move.   If there are businesses in the St. John’s area who would like to have their staff trained on autism sensitivity, or would like to consult with me on how to make their business a more inclusive environment, please contact me through my website: www.florencestrang.com.   Not only do I deal with autism on a personal level, I am also an Educational Psychologist, so doing these presentations is part of my work.   I am offering this as a free service.

You can buy  our book “Calm the F. Down! A Day in the Life of an Autism Mom”

This entry was posted on April 22, 2017, in Uncategorized and tagged , autism acceptance, autism bathroom accessibility, autism friendly, autism toileting, autism understanding. 5 Comments

I Won’t Let Them Get To Me!


It took me two days to mentally prepare to take Ben for a haircut.  There have been a lot of changes for him lately with moving from a small town to the city.   New house.  New school.   New bus.  New routines.   Change is not easy for anyone, but for a kid with Autism, it can cause extreme anxiety.  I am happy to say that for the most part, Ben has been adjusting very well.  However I was worried about his first hair cut in the city.   Miss Goldie gave him his very first hair cut as a baby, and pretty much every one he has had since then.  He doesn’t like to get his hair cut and will sometimes get upset and resist.   Miss Goldie knows how to get the job done,  but I wasn’t so sure about a city slicker hair stylist!   Surprisingly, Ben was very cooperative, which I can only attribute to the fact that I bribed him: “First hair cut, then a new DVD at Walmart.”

Although the hair cut went well, my palms were sweating as we headed towards the DVD display.  I know Ben’s pattern very well.  He will have his heart set on a particular DVD and if it is not there, watch out!   As feared, Ben took a quick look at the DVD display and let out a blood curdling scream, “THOMAS DVD! THOMAS DVD!”  There were no Thomas DVD’s.  An unexpected change.  Panic for Ben!  I noticed people moving away from us, even the sales associates seemed to suddenly disappear. In his state of heightened anxiety, Ben started to cry while flapping his hands and jumping around.  Knowing what a commotion Ben’s meltdowns can cause,  I just wanted to get him out the store as quickly as possible. 

As I dragged him through the main aisle of Walmart, people darted out of our way, giving me that “bad mommy” look; some of them blatantly staring and pointing.   They seemed to look at Ben as if he was a dangerous lunatic wielding a weapon, as opposed to an 11 year old boy brandishing the lollipop that he had just earned for being well behaved at the hair dresser’s.  I held my head high.  I was used to the judgemental stares and dirty looks.  I had grown a thick skin over the years.  They weren’t going to get to me!

As we neared the exit, Ben decided that he deserved another treat, a pack of hubba bubba bubble gum.  With bated breath, I took him to the gum display, terrified that his preferred flavor was not there, which would certainly result in another melt down.  People waiting in the line behind us impatiently tapped their debit cards, as Ben took his time to browse the display. 

“Hurry up, Ben.  There are people waiting”, I said, feeling more and more anxious with each passing second. 

 The elderly lady working the cash smiled at me and said, “That’s fine.  Let him take his time and choose his treat.”  

When he finally picked his gum, she spoke to Ben very kindly, “Would you like me to put this in a bag for you?  My grandson has autism too.  He likes to have his things put in a bag that he can carry himself.”

I paid the cashier, but with the big lump in my throat, I was barely able to speak to her.

As I walked to the car, I could no longer hold back my tears.   I cried.  Not because of the rude way that Ben was treated by the strangers that we encountered on our outing.  I was used to that.  I experience it nearly every time I take Ben out in public.  I don’t let them get to me.  What moved me to tears was the kindness of this lady who, despite Ben’s unusual behaviors, treated him with the dignity and respect that he deserves.  That is what finally got to me. 

If you enjoyed this post, you will love Florence’s new book:  Calm the Fuck Down!  A Day in the Life of an Autism Mom.

Learn more


Confessions Of An Autism Mom

Flo and Ben

Some mornings with Ben are relatively stress free. This is not one of them. I knew when I heard him still babbling at 2 a.m that it would not be easy to get him up in the morning. With my gammy arm (resulting from a mastectomy and lymph node removal in 2012), it can be difficult for me to physically drag his large 10 year old body from the bed when he is tired, but I was up for the challenge. I open his bedroom door and I am greeted by the smell of poop. He had an accident during the night. Well, “accident” may not be the most accurate word. While Ben is fully toilet trained for number 1’s, his preferred method for number 2’s is to do it in his clothing and then dump it in the toilet. However, when I consider how far he has come with his toilet training, I realize how lucky I am that I don’t have more of a mess to contend with this morning.

Up until about two years ago, Ben engaged in a behavior not uncommon for autistic children: fecal smearing. From about the ages of 4 to 9, each time Ben pooped, he would smear it on himself, the furniture, his clothing, toys, the walls and the floors. Over the years I have thrown away thousands of dollars worth of “stuff” and spent countless hours cleaning feces. While many parents of children with autism deal with this issue on a daily basis, it is probably something that you have never heard of. That’s because there is an air of secrecy that goes with it. We don’t like to discuss this issue, even with the professionals who work with our children, because of a fierce determination to protect their dignity. It would kill me to think that anyone looked at Ben and his behavior as “disgusting”, although that would likely be the reaction of many. So we keep it hidden. Truth be told, I am only comfortable confessing it now because he no longer engages in that behavior.

As I pull Ben out of bed and start to undress him, I am reminded of a “poop-fest” that happened a few years ago, when I was undergoing chemotherapy.   It was about 1 a.m. Ben and I were alone in the house and I could hear him moving around in his room. Although I was feeling sick, exhausted, and drifting in and out of sleep, I felt compelled to go check on him.   When I opened his door and looked in, all I could see in the darkness was the whites of his eyes. My first thought was, “Where did he get the black marker?” Then the smell hit me and I realized that it wasn’t ink coloring his face.   It took me more than two hours to clean him, his bed, the walls and the floor. Ironically, while that is an unpleasant memory for me, conjuring up that image reminds me of the progress that he has made in toileting. The clean up this morning will be relatively easy. I feel grateful.

With his bath complete and the bed changed, I slowly get him to move downstairs.

“It is time for breakfast, Ben,” I say as I hand him a plate of turkey bacon and a glass of juice.

“No breakfast! No breakfast! BOOKS!” he yells back.

“Oh no,” I think. “It is going to be one of THOSE mornings.”

As I watch the clock tick away, I get more and more anxious, knowing that we have a small window of opportunity to catch the school bus. Luckily, he agrees to let me get him dressed without too much of a fuss. I put on one sock. He runs into the living room. I chase him and put on the second sock. He bounces to the kitchen, hands flapping. I follow in hot pursuit on my knees to finish dressing him. I feel guilt. I want Ben to learn self-help skills such as dressing himself, yet I don’t have the patience to deal with it in the morning. I put on his jacket and boots just as I see his student assistant arrive at the top of the driveway to accompany him to school. Today we will make it on time. I feel relief.

“Let’s go, Ben,” I say.


I feel impatient. “Jesus, Ben. We have to go now or we will miss the bus!”

“Bye, Jesus! Bye Jesus! Mommy is happy,” he shrieks. He senses that I am getting angry. He doesn’t like to see me upset.

I know it is pointless to argue with him, so I try another tactic, “Ok Ben, you can take 5 books to school today.”

“10 books,” he replies firmly.

I smile and nod my head in agreement. He has mastered the skill of negotiating. I feel proud.

Ben fills his backpack with books and we head out the door, just as the bus drives away. I feel frustrated. Although it will make me late for work, I have to drive him to school. On the way, I hear the familiar sound of Ben’s happy noises, “Queek, queek, queek,” he vocalizes with a big smile on his face. I smile in return.   I am glad that his mood has shifted and I wonder what happy thoughts accompany that bright, beautiful smile.

“He may be a little off today,” I tell the student assistant who greets us at the door of the school. “He didn’t sleep well last night.”

I breathe a sigh of relief as I board the car and head to my office. I love my work as an Educational Psychologist! Each day, I work with kids like Ben. Kids who don’t quite fit the mold; kids with autism, ADHD, learning disabilities, and behavioral disorders. I feel thankful that Ben has taught me so much about how to understand their issues. Being Ben’s mom also allows me to better support the teachers and parents of the kids that I work with. I know how they feel. When I discuss methods to deal with certain behaviors, I am not just “talking the talk”, I am walking that walk every day as a parent!

Mid-morning I am surprised by the sound of the fire alarm going off at the school where I am working.   More than 500 kids file out of the school into the freezing cold. Soon we are all ushered to a neighbouring school to wait in the gymnasium until the issue is resolved. The loud noise of a gym full of excited and scared kids is almost unbearable. I look across the room and see a boy about Ben’s age. While I don’t recognize him, I immediately recognize his behaviors. He has his hands clamped firmly over his ears, and he is gently rocking back and forth. There is a look of pained fear on his face. I feel compassion. I cross the room, give him a hug and gently rub his back. He smiles at me. I realize why God has blessed me with this challenge.

It is sometimes hard work being Ben’s mom. It is always a blessing.


This entry was posted on January 10, 2016, in Uncategorized and tagged , fecal smearing, fecal smearing autism, inspiration autism. 18 Comments

The Secret To Well-Being

I am going to switch gears in this week’s post and talk to you about someone who is near and dear to me, my 9 year old son, Ben. As many of you know, I am the single mom of three great kids, Kailtyn, who is 19 and on the Dean’s list at University. She has a very bright future, and I look forward to watching her life unfold. Donovan is 16, not as scholarly as Kailtyn, but what he lacks in work ethic, he more than makes up for with his super-loveable personality. He is a good kid, and I am sure that life has many wonderful things in store for him. Then there’s Ben.

Fam jam

Family pic, summer 2014

When Ben was born, I was over the moon with happiness! Eight pounds of beautiful, healthy baby perfection. I know you are not supposed to compare your kids, but I couldn’t help but to sneak a peek into Kaitlyn’s and Donovan’s baby books, just to see how Ben measured up. On all the important things, like rolling over and taking his first steps, he was right on par. Such a smart little boy! I remember for Ben’s first Christmas I gave him this little doctor’s kit, and I secretly hoped that he would grow up to be a doctor, like his dad.

Ben A

Ben’s birth, May 11, 2005


But by Ben’s second Christmas, I started to notice some peculiar behaviors. Rather than put his trucks on the floor and go “vroom, vroom” like most little boys do, he would turn them over and just spin the wheels, over and over and over. He had not spoken a single word at 2 years old, but what concerned me most was how distant and withdrawn he was. Ben never came to me looking for attention. He seemed to prefer to be on his own and do his own thing. In many ways, Ben really did appear to be “in a world of his own.”


So when Ben was diagnosed with autism at 3 years old, it didn’t come as a shocker to me. But still, it was devastating news. In some ways, it felt like a death. Although Ben was still physically with me, all the hopes and dreams that I had for his future were suddenly gone. I was no longer concerned with whether or not Ben might grow up to be a doctor. I had more pressing concerns now! Like, would he ever talk? Would he ever be toilet trained? Would he ever have a friend?

Ben B

Ben’s third birthday, just days after his diagnosis of autism. 

(It would be three more years before he was able to blow out his birthday candles on his own.)

For the next three years, I devoted myself to Ben’s therapy. I was determined to fix Ben’s autism! So I learned how to do all of his therapies: ABA therapy, speech therapy, occupational therapy, and I started to view nearly every moment that Ben and I spent together as an opportunity for therapy. We weren’t just throwing rocks in the water, we were working on his fine and gross motor skills. We weren’t just blowing soap bubbles, we were developing his oral-motor skills in preparation for speech. I wasn’t just giving Ben a bath. I was teaching him important self-help skills. In some ways, all of my hard work paid off. Ben’s skills were slowly developing, but I couldn’t shake that feeling that if I suddenly just disappeared off the face of the planet, that Ben wouldn’t even notice.

Ben C

Throwing rocks to improve Ben’s fine and gross motor skills.

Then something happened that completely turned our worlds upside down! I was 44 and Ben was 6 when I was diagnosed with breast cancer and told that my odds of surviving for 5 years were just over 50%. As you can imagine, “fixing” Ben’s autism, was no longer at the top of my list of priorities. I was in survival mode! Over the next year, as I underwent a mastectomy, chemotherapy and radiation treatments, I did not have the time nor the energy to devote to Ben’s therapy. Now don’t get me wrong. We would still go for walks on the beach and throw rocks in the water, but we did it just for the sake of seeing the splash. We would still blow soap bubbles, but rather than force Ben to do it, I just let him enjoy the bubbles that I blew. And I started to see bath time as an opportunity for play, not work. I can honestly say, that for the first time since Ben was diagnosed with autism, I was truly and completely……PRESENT….with him. No hidden agendas, not trying to fix him, just present. And that, my friends, is when Ben started to come out of his world, and into mine.

Even though Ben still could not talk at 6 years old, he could read and had learned how to use a computer. While I was going through treatments for cancer, he started doing something that he had never done before. He would type up and print off these notes and bring them to me; notes with messages like “mom is sick” or “mom is hurt”. I was completely blown away! I really did not think this kid was capable of understanding how sick I was. Other times he would bring me notes with messages like, “Dear mom, you are nice,” or “Dear mom, I love you.”, and those notes let me know that not only did he understand, but he cared. And if I suddenly did disappear from the face of the planet, he WOULD notice.

Ben EBen delivers a note to cheer up his mom after a difficult chemo.

For most of my life, I had been searching for the secret to “well-being”, and peace of mind. I had read hundreds of books, enrolled in courses, and attended numerous workshops. Over the years, I had many gurus: Wayne Dyer, Thich Nhath, and Eckhart Tolle, just to name a few. Ironically, I learned more about well-being the year I battled cancer than I did from all my years of reading books and doing courses. The greatest lesson was taught to me, not by a great guru, but by a 6 year old, autistic boy. When I stopped worrying about Ben’s future and trying to fix his autism, and just enjoyed BEING with my little boy, it brought both of us a sense of well-being. When I let go of the fear and worry about my future with cancer, and focused on healing in the present moment, this also gave me a sense of well-being. With a mind that was at peace, my body was better able to do the work of healing itself.

Life with Ben still has its challenges. But the joys of being Ben’s mom far outweigh the challenges.  Although Ben may appear to be in a world of his own, his kind gestures while I was going through cancer treatments proved to me that he is very aware and very much a part of my world.  This little boy taught me one of my greatest life lessons:  that the secret to well being, lies in being present.

Ben F

Ben, being “present”.

This entry was posted on November 16, 2014, in Uncategorized and tagged , autism mom, Being present, Ben, cancer, Eckhart Tolle, presence, Thich Nhat Hanh, Wayne Dyer. 14 Comments

Me and Ben


Me and Ben at the Sensory Garden which I designed for children with autism.

In order to sound grammatically correct, I guess I should have entitled this post, “Ben and I”, but doesn’t that sound just a little stuffy?  Sort of like, “Please join Ben and I for tea and crumpets.”  (Imagine that said with a posh British accent.)  Not that there is anything wrong with the Brits.  In fact, my little Ben happens to be half British himself, and has been to the mother country several times, which is quite a feat for an 8 year old who has autism.   An old friend of mine who has never met Ben, recently asked me to explain how Ben’s autism affects our lives.  So here goes…..

Ben was born a perfectly normal, and healthy boy on May 11, 2005.  As a baby, he reached all of his developmental milestones at the right time, such as smiling, rolling over and walking.  By the time he was two, I noticed that he was not talking, and I recognized that as a red flag for learning disabilities,   but I never imagined he could have autism!   When his father, a Paediatrician, hinted at this diagnosis, I freaked.  “How dare you suggest that Ben has autism?  You call yourself a doctor?”  But as time went on, I could no longer ignore the signs:  his fascination with the weather channel, his obsession with letters, his lack of interest in being around other people, and of course his poor communication skills and lack of eye contact.  By age three, Ben still had not spoken a word and was not responding to his name.   It was at this age that he was officially diagnosed and it was like a death to me.  I grieved for several months, shedding many tears behind closed doors as I tried to come to grips with a more realistic view of how Ben’s future might look.  While I had hoped that this little boy might grow up to be a doctor like his Daddy, now I had more pressing concerns.  Will he ever talk?  Will he ever have a friend?  Will he need me to care for him for the rest of his life?  (This was one of the questions that haunted me most when I was diagnosed with cancer.)

It has been five years since Ben’s diagnosis, and that time has been filled with many challenges, as well as many joys.  Perhaps the most challenging aspect of Ben’s behavior is his need for structure and routine.  When something changes in his schedule, or the internet is not working, watch out!   Ben will scream loud enough that I sometimes think there is blood trickling out of my ears.  But luckily, his melt downs do not last long and it is generally easy to distract him to something else.  Another challenge for me is his great Houdini skills.  Even though my house is locked up like Fort Knox, he continues to figure out how to escape the bolts and chains and has run away several times.   Since he has very little awareness of danger, he could easily be hit by a car, or wander off into the woods.  This is a constant torment for me.  (I asked God to give him 100 guardian angels to watch over him, and I believe he must have at least that many, since he has been kept out of harms way so many times!)

Another ongoing challenge is learning problems.  When Ben first started school, I insisted that he do the same program as the other children.  I figured that if the teachers kept their expectations high enough, Ben would eventually rise up to meet them.  I was wrong.  One of the main characteristics of autism is that it is a communication disorder.  While Ben is very bright in many ways (for example, he could read before he could talk, and he is a whiz on the computer!), his communication skills are weak and he sometimes seems lost in a classroom that uses language as the main tool of teaching.  I had to eventually allow his program to be modified so that he is now learning at his own level.

The other main area affected by autism, in addition to communication, is social skills.  You may have heard the expression that people with autism   “live in a world of their own”, and Ben does appear to be that way sometimes.  Most times, he would prefer to hang out by himself, rather than be with his family or other kids.  But sometimes he surprises me.  When I was diagnosed with cancer in 2011, my first concern as a mother was for my children, but mostly I worried about how my two older children would take the news.  I was not so much concerned about Ben.  At six, his language skills were severely limited, and I did not think he would even understand how sick I was.  Even if he did, I reasoned that being “in a world of his own,” he would not really be concerned with my plight.  But again, I was wrong.  Even though he could speak very little, Ben had learned to use the computer to type up and print off messages.  While I was going through treatments, I would find his type written notes around the house with messages like, “Mom is hurt” or “Mom is sick.”  This told me that he really did understand what was happening to me!   Other times he would bring me notes, with messages like, “Dear Mom, you are nice,” or “Dear Mom, I love you.”   This told me that not only did he know that I was sick, but he also cared enough to try to cheer me up in his own little way.    That is one of the many joys of being Ben’s mom.


Me and Ben when I was going through chemo.

Last week, I met a woman at a Christmas party and we were talking about our children.  When I told her about Ben, she said, “Oh my, and you can’t even put them away in homes anymore.”   I was so shocked by her statement that I could not respond.   If I had my time back, I would have said something like this: Ben has a home, and he shares it with me, his brother and his sister, all of whom adore him.  (Actually, he has two very loving homes since he spends a lot of time with his Daddy and Lily.)  He is smart, loveable, compliant, and very gentle.  He has never shown aggression towards other people or any living thing, for that matter.  Our home would not be a home without Ben in it.

Before getting cancer, I was obsessed with fixing Ben’s autism.  I figured that with enough therapy and prayers, he would someday be “normal.”   After facing my own mortality, I realized that my purpose in life is not to “fix” Ben, since he was never broken.  He is perfect just the way he is.  It is my job as his mother, to help him reach his greatest potential, whatever that may be.  Isn’t that the job of all parents?

Fall and Christmas 2013 514My beautiful children.




Awareness: Autism and Breast Cancer

When my son, Ben, was 3 years old, I knew there was something wrong.  Having nearly 20 years of experience as an Educational Psychologist, I analyzed the possible diagnoses: cognitive delay, learning disability, autism, or some other syndrome?  Whatever they called it would not change the reality of his deficits.   When he was finally diagnosed with autism in April, 2008, I breathed a sigh of relief.  If he was going to wear some label to describe his lack of communication and socialization skills then the autism label gave him the best chances of getting the supports he needed.  There is a huge awareness campaign around the autism spectrum disorders these days. Awareness brings lobbying which brings money which brings solutions.   For the past 4 years we have had a trained ABA therapist come to our home every day to work with Ben, paid for by the Government.  That is what comes of increasing awareness.

October, of course, is breast cancer awareness month.  Many people question the value of raising awareness…….and just what it is that we are raising awareness of.   Personally, I think that awareness is a good thing, and even though I too sometimes feel sick at the sight of so much pink, the reality is, resources will go to where awareness is the greatest.   I do understand why some people take issue with the pink campaign.  It is a fact that this campaign focuses mainly on the “survivors”, while sometimes downplaying those who are in stage 4 or who die of the disease.  However that is a reflection of the society we live in.  People do not want to be reminded of the “sad stuff” and are more likely to support the cause when they see the “success stories.”  (That said, I have to give accolades to our local Canadian Breast Cancer Foundation who has put the spot light on stage 4 sur-thrivor, Dana Blackwood Cox, and our  local Canadian Cancer Society who recognizes the contributions of stage 4 sur-thrivor Dulcie Osmond.)

Marie, at Journeying Beyond Breast Cancer, brings awareness to the issues of those who are trying to pick up the pieces of their lives once their cancer treatments have ended and there is no evidence of disease (NED) in their bodies.  She wrote a very interesting post this week, in which she states: “Someone contacted me during the past week to say that my involvement with the NED retreat upset her, as to her mind, it was excluding those who have metastatic cancer.”      In my opinion, Marie should be commended, not criticized,  for the work that she does around cancer…..no matter what the body part affected or the stage of the disease!  Why do we as a community of people affected by cancer set up these “points of contention”?

Here is an idea:  let us all just live and let live.  If I want to call myself a survivor, then let me call myself a survivor.  It is not meant to show disrespect to anyone who has died of the disease. If I want to wear pink, let me wear pink.  It is not meant to offend anyone with a diagnosis of breast cancer. If I want to see the gifts or blessings or perks in having cancer, then let me see it this way.  It is not meant to offend those of you who do not share my attitude.  If I want to help people who are living the NED life, then do not criticize me, it is not meant to de-value those who are living with cancer.  In the final analysis, we all want the same thing: a world that is free from cancer (or at least a body that is free from cancer).  Let our differences NOT divide us!

This entry was posted on October 30, 2012, in positive attitude cancer and tagged , breast cancer awareness, Journeying Beyond Breast Cancer, NED. 6 Comments