I am the parent of a child with autism.
I am a warrior. I am a fighter. I am an advocate. I am strong. I am resilient. I can do it all.
I am a parent of a child with autism.
I am weak, I am tired. I am afraid. I am helpless. I am depressed. I cannot do it all.
I feel both, I think both, I behave as both. I am both.
I am often asked about my experiences as a parent as it relates to a child with autism. The truth of the matter is that there are two sides to this journey. There are days I wake and am hopeful for the future, that I am prepared for whatever the day may bring and strong enough to handle the physical and mental challenges of dealing with a child with a disability.
Then there are the days I simply cannot get out of bed. Where I am filled with grief, where it takes every ounce of my being to get up, get dressed and prepare my children for school and my own day of work ahead. Days where I am filled with heartbreak, where I want to cry and silently scream at the world – “THIS IS NOT EASY. THIS IS NOT FAIR. WHY ME?”
My son Jack is a beautiful, bright 12-year-old boy with autism. He loves to watch Dora, swim, jump on the trampoline, snuggle, play with stickers and be tickled.
But Jack also engages in violent, aggressive and self-injurious behaviour. Myself and caregivers have been given a concussion, been pushed down a flight of stairs, had my hair ripped from my head, fingers broken and my lip cut open. I have nerve damage in my arm and days were I feel I am having a heart attack.
When Jack was diagnosed at 3 years old our world fell apart. We blamed ourselves, his doctors and God. Learning to live and accept his diagnosis became our journey and once we realized this was a lifelong disorder, we set into finding the right resources and programs to help our son. That included ABA, IBI, Speech therapy, OT, naturopathic medicine, to name a few. There were mixed results with ABA being the most successful but there was no significant something that we were hoping for. In time our goals changed to developing an intervention plan that addressed his specific needs, largely around self-help and community skills. Today our goals for Jack are independence and his happiness and to be a respected member of society.
Being a parent of a child with autism is difficult. Not only are the financial costs of therapies and programs, there is the emotional costs of seeing your child cry for no reason, the frustration at them not being able to communicate being hurt, sad or sick. The pain of them hurting themselves and the pain of seeing them unable to develop friendships.
Being the parent of a child with autism is also inspiring. I have learned that small accomplishments are big accomplishments, where a good day for my son is a great day for me, that judgment has been replaced by compassion and what matters most in life is health and happiness. I am grateful that I have a son that is sweet, smart who and owns a piece of my heart. My journey today is about perseverance and love.
I am a parent of a child with autism. Today I am a warrior. Today I am strong, resilient and an advocate for my son. Today I got out of bed, my children are at school and am hopeful for the future.
I would like to thank Liz for writing so honestly about her experience as a mother and an advocate. It takes a lot of courage to be vulnerable and open about the fears and heartaches one feels. Women like Liz are an inspiration. Women who are willing to take off the veil of perfection and say, “this is my life and it’s not always easy”. Women who are willing to stand up for those without a voice and lead by example. Women who no matter how dark the days get, will always keep looking for the light.
Liz Phipps is the proud mother to Jack and her 8-year old daughter Summer. For the past 10 years Liz has been a strong activist in the autism community, serving as the Executive Director of Unity for Autism and doing advocacy/fundraising work for Autism Ontario. Liz’s story has appeared in the Toronto Star and she has been and as a guest contributor on CBC Radio and Rogers TV. This year, she was a guest speaker at the Geneva Centre for Autism Symposium, sharing her story to over 1,300 delegates from around the globe. Currently, Liz sits on the congregated school council for special needs TDSB schools across Toronto as well as serving on Parent Council for her daughters school, John Wanless P.S. In her free time she tends to puppy duties for her 12 week old Bernoodle and you can see her running the streets of North Toronto, always contemplating another marathon. For more information about autism services, programs and funding for Ontario, Liz suggests the incredible resources of Autism Ontario www.autismontario.com