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.
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’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 He had not spoken a single word at 2 years old, but what concerned me most was how distant and withdrawn he was.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’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.
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 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, being “present”.
This post needs to be submitted to Huff Post or any other large audience publication so as many people as possible can read it. Brilliant!
You and Ben bring out the best of each other. Raising any child has its challenges but you have been faced with far more than others and you have faced them head on and overcome most of them. Congrats!!!!
Thank you, Jackie!
Thanks, Suze! Loves ya.
Florence, your experience with Ben that you describe here could benefit many. Many people just look to the future and do not enjoy the present. I know some who can’t get beyond what will happen to their child when they are older and as a result miss so much of the present. What you have written here gives a whole new perspective to living with an autistic child. Excellent job!
God Bless
Rita S.
Thank you, Rita. Very well said.
Florence- you have inspired, lifted and encouraged so many people especially parents with your words, this story, and your journey. Your positive embracing attitude towards life, your well being, your children especially Ben has encouraged most of all to pursue ahead without fear no matter what in the face of difficult challenges. you have taught us to face our fears and surround ourselves by people who love, care and support us. Ben is your saviour and life long teacher. I am a firm believer God sends us each someone on earth to take us down a different and unknown road. You should be a motivational speaker. You have so much to give, share and teach us. Keep sharing, preaching and mentoring. God bless friend.
Thank you so much for your kind words, Loretta. I really appreciate you following my blog.
Beautiful and touching article about you and your son. I think it is wonderful how you have both helped each other through your respective journeys. His lesson to you that the secret to life is being present may be the greatest teaching you will ever receive.
Thanks for your comment, Sharon!
I read your story that was published in a Chicken Soup for the Soul book, The Power of Positive and decided to take a look at your blog you said you made. I enjoy reading blogs so this will be fun 🙂 First off, I believe autism is a “disease” intended to teach us all to be a people of fewer words and to choose them wisely. Ben shows us all that we can communicate using no words. That’s just my perspective of it anyway and it’s a great lesson. It’s really a blessing that you’re still alive. I love how you’ve stood your ground and how you continue to display real strength and courage, never backing down! Positive thinking really is the best choice to live a happy, fulfilling life. Every time I hear someone else has taken up positive thinking, I get all happy and excited for them as well as myself because I know the many differences it can make, having been through depression a year ago. Positive thinking has helped me climb out of that dark hole of despair. Optimism saves people. Your story is a great stepping stone, helping me along my journey as I continue to be inspired and inspire others with the power of positivity. Thank you bunches for sharing, Cancer Warrior =) Keep on keepin’ on!
Thanks for your thoughtful comment, Destiny. I agree that looking at the positive side of things helps us get through some difficult times. There is always something to be grateful for.
Loved this! I have two boys on the spectrum and I totally agree with your philosophy. They are present with us, just perhaps not in the way we anticipated they would be. Being present is so important. Thanks for sharing this!
Autism moms really “get it”:)