Today, April 2nd, marks World Autism Awareness Day. Today we Light it Up Blue in our homes and schools to show support for those who live with Autism, day in and day out. In my career, I have the opportunity to work with extraordinary teachers and families of children with exceptionalities. Having a sibling with special needs myself, I find commonalities between myself and those teachers, parents and siblings. I feel that I hold a certain empathy and compassion that other educators might build upon over years of experience, while it is something that I grew up with naturally.
Growing up, I knew that my responsibilities as a sibling would extend far beyond the 'duties as assigned' of a typical sibling. When I met Andrea Haefele and began teaching her daughter with Autism, Bella, I formed a relationship with her family as both an educator and a friend. I took extra awareness of Petie, her 4-year-old son, as he wavered between being a regular little brother and also a protector and advocate for his big sister - something I was familiar with.
Please read and share Andrea's guest post below, which is a letter written to her son Petie. When thinking about Autism Awareness Day, I urge you to recognize every advocate of the special needs community, both big and small. Happy Autism Awareness Day!
I often wonder if you realize how special you are to your Dad and I. Most of our days are consumed with worry for your big sister, Bella, who has special needs. Although it may seem like we don’t worry about your needs, we hope that you will always realize what an important role you play in our family.
You were born when Bella was 3 years old. At the time, I was very overwhelmed with many feelings about who I was as a mom. I was evaluating my pregnancy as if there was something I had missed, or something I could have done to prevent Bella’s exceptionalities. On top of her developmental delay in all areas of growth and development, your Dad and I were told that she was also on the severe end of the Autism spectrum. Educating ourselves on Bella’s condition turned into a full-time job and our lives completely changed. Your arrival to our family was a gift, as we began to focus our time on raising you to be strong and empathetic – knowing how important you would later be to your sister.
As a baby, you were always easygoing and made motherhood a breeze for me. You ate and slept well, and loved to explore the world around you. As a toddler, you began to notice and follow your big sister. You would always try to keep up with her as she started to walk independently when you started to crawl. You were fascinated with her therapy swings as she worked on her balancing exercises. You took a special interest in her cause and effect toys as she giggled when something popped or lit up. Your first display of jealousy was when Bella started to communicate. Her binder of picture cards intrigued you, and as I handed her a toy in exchange of her request, you learned the power of your voice.
Today, you are four years old. Although you haven’t even stepped foot in grade school yet, your voice is more powerful than that of any other preschooler I know. When we are out with Kadence, Bella’s service dog, you proudly tell others that Kadence is working. “Just looking, no petting!” you warn as others approach.
A few months ago, we were at a birthday party at a bowling alley. One of the waiters came to take your food order. When the waiter approached Bella, without hesitation you informed her: “My sister wants grilled cheese and French fries. She has a water bottle so no drink for her.” When we have friends over to play, you sternly state that they cannot sit in Bella’s spot at the table, because she needs a special chair and plate to eat.
Your dad and I spend a lot of time with Bella. We take her to countless doctors’ appointments, specialist visits and endless therapy sessions. When you tag along with your favourite book or toy train, you sit quietly at the table colouring and cutting your latest piece of artwork. When we leave a restaurant in a rush, you quickly finish your meal because you understand that the bright lights or loud sounds make Bella irritable. I know you see the love that we have for your special sibling, but I wonder if you realize the love, gratitude, and admiration that we have for you.
For you, these trials and tribulations that our family endures is just a part of life. My dearest Petie, awareness of what makes us all uniquely different is something that is natural to you. At a young age of four, you have already gained more wisdom than most adults. Your natural instinct for compassion, empathy and humility is something that many will never understand. Growing up with Bella has given you the awareness to look beyond a wheelchair or a cane, and to see the invisible needs of the person inside.
My dearest Petie, your voice is also Bella’s voice. Although Bella cannot use words to verbalize her needs, you know her happy screams, as well as her distressing whimpers. You know that when you sing Old Macdonald or Wheels On The Bus, she will always clap and smile. You notice when her glasses are crooked and you hold the frame to set it gently around her ears. You guide her hand to point at her communication device to teach her how to request a toy she wants. When it is snack time, you share your last goldfish cracker with Bella. I quietly observe as you cue Bella’s elbow during IBI therapy so she can imitate her therapist. At night, you help Bella put on her pyjamas and role model how to use her GoTalk to say good night. When she falls, you run upstairs to get her blanky and play peek-a-boo to make her smile. You always see what she needs. You see that she needs you. And your Dad and I see all everything that you do for her.
Our list of worries are endless. Will Bella trip on the uneven surface of the playground if we let go of her hand today? Where will she be when she has her next seizure? Are her peers at school empathetic and kind to her? But one thing that we never have to worry about is the pride and love that you have for your big sister.
You are and will be amazing in this world. Thank you Petie.
Mom & Dad
Last year, our family was given an incredible gift by the Lion's Foundation of Canada in the form of an Autism Assistance dog guide for our daughter, Bella. Kadence provides safety and emotional security for Bella, and has become an integral part of our family and her school community in the process. Please donate HERE to help the LFC continue to provide service dogs to Canadians with disabilities and their families.