Natasha is a mom to three; her youngest is a Grandview kid. She works as part of Grandview’s Family Engagement Team.
My son wasn’t even six months old the first time I said the word “autism” out loud. It was to my husband. I had spent the better part of the last few months Googling:
“Why doesn’t my baby look at me?”
“What does flapping hands mean?”
“Why will my baby only sleep when he’s on me?”
I watched videos on YouTube of how autism presents in infants and babies. I didn’t know anything about autism, but I called my husband over and said, “I need to say this out loud and maybe I’m crazy and maybe I’m wrong.. but I have to tell someone. I think our son is autistic.”
Months go by and at each doctor’s visit we’re left with no answers, “He’s just a baby, kids develop different, he’s too young to tell.” So, we waited and I Googled more…
“Why isn’t my son talking?”
“Is walking on your toes, okay?”
“When will he recognize his name?”
Every question led me to the same outcome. Now we just needed to find someone to listen!
My son was also born prematurely, so he was followed by the FUNN clinic at Lakeridge Health. At his one- year check-up I said it again, they told us if we have concerns at his 15-month check-up, they would bring in someone from Grandview to do a speech assessment.
From the first day, Grandview listened. We were referred to a developmental pediatrician, and on September 18 2018, just one month before his second birthday, my son was diagnosed as Autistic, level 3, non-verbal. There were a lot of tears that day in the doctor’s office. But the tears were of relief, for knowing that I wasn’t crazy and that we would finally be able to learn.
He is my third child, but I’m learning how to be a mom all over again.
Family and friends told us how “sorry” they were when they found out. Professionals told us they could help us fix him, but that he would likely never talk or understand us..
My son is here to tell them they were wrong! Nothing changed the day he was diagnosed. He was the same little boy who had stolen or hearts from the moment he was born. I was a fool to wish I was wrong. Autism is beautiful! It’s a whole world that you miss out on until someone special invites you in.
We don’t want to change him; we simply want the tools to help him succeed in a world that struggles to accept anything different. A world I’ve never fit into either. “Dare to be different.” Those are the words my Memere and mom would always say to me as a child. Acceptance is the next step towards a truly inclusive community.
My son is now six-years-old and has the best laugh in the whole world! His humor and character are unmatched. He gives the best hugs. His favourite thing to do is try and scare you. He thinks he’s hilarious! He loves Lightning McQueen, fart noises, trains and singing the “Wheels on the Bus” song all day long.
I wanted to find all the ways to support him, and along the way I found a lot of information to support me too. The more I read and learned the more my own life started to make sense.
I feel like with my work at Grandview, working with staff and professionals, as well as being surrounded by the autism community, that I’m pretty well connected. Yet it still took me four years and paying out of pocket to get my own autism assessment.
Often times, adults go undiagnosed because they are simply unaware of autistic traits or they’ve learned to mask so well. Being self-diagnosed is common and accepted in the autism community. Getting a diagnosis is a privilege at any age, but the barriers for adults are honestly just cruel. Finally on September 30, 2022, four years after my son, I was diagnosed Autistic level 2.
Now, I’m sharing the level with you all today, not because I believe in them but to show you how moderate /severe can look like with years of masking. Personally, I don’t believe in the levels because you can only diagnose us on the level that we present with at the time of the assessment. It’s not how it affects me, or how much I’ve learned to mask.
The good news is that I’m learning to unlearn! Unmasking is hard but I deserve to be my authentic self. It’s a lot of undoing, but I’m doing the work. My son deserves to be proud of himself, and I’ll do the work to make sure he’s never ashamed of being autistic.
Often, my needs and my son’s needs go against each other, so we are becoming experts together.
Thank you, Grandview, for listening when no one else would and continuing to listen and learn from those with lived experience. We will forever be grateful for everything Grandview has done for our family. We’ve got a long way to go together, but I’m glad Team Grandview is part of our journey!
I’ve learned to see the world through my son’s eyes, and if you’re willing to get into his world instead of expecting him to join yours, it’s magical and it feels more like home than anywhere I’ve ever been before. I have Alden, my family, and my work colleagues (who have become lifelong friends) to thank, for helping me find myself, too!
