“When the professionals first told me about autism, they described it to me as a spectrum. When I pictured that spectrum, the one they described to me, I imagined a long line drawn with a thick black sharpie across a white wall, down an endless hallway. I hated the black and white and the dark, sad, clinical parts of autism. I hated straight lines too. So I started thinking of my son and his autism as a spectrum of color, like I did in the beginning, before the fear and…
Read More
I think a lot about what a privilege it is to be able to communicate and be understood. Probably more than the average person. Not always of course. When my son was 1 and 2 and even 3-years-old, and not babbling, I remember crying in worry on the phone to my mom and her saying…’everybody talks Katie.’ I can still here her saying it. The words providing so much comfort at first. Even my dad sneaking in…’I just know he is going to talk sweetheart.’ Well, here we are. 11-years-old…
Read More
It doesn’t have to make sense to me. Or you. Because it makes sense to him. My son Cooper loves things. Treasures we call them. DVD cases stacked up tall. The actual DVDs in a bin in the cupboard. Books. Piles of paper. Every color. Train magazines from long before he was born. And a very special pile. A smaller one. Of pages ripped out of certain publications. Each one containing something of value to him. Train Calendars. Postcards. Photos in frames to his back. Every so often pointing to…
Read More
“I recently stumbled upon a definition of the word autism. It was different than the clinical one I was used to. The Maori word for autism is takiwatanga. Translated it means, “In one’s own time and space.” I fell in love with it. Cooper. Me. Our family. We all settled into autism in our own time and space. I used to be scared of forever. I’m not anymore. Now I am thankful. Because I get forever, with my boy.” There is so much beauty in this life. We just have…
Read More
I heard his little voice before I saw him. ‘Cooper. Cooper. We don’t hurt our body. We love it.’ I peeked around the corner. What I saw made me gasp. The three year old who wants to be 9 like his next older brother. Blonde hair. Bare feet. Scabbed over knees from a crash on his bike. A Paw Patrol costume half on. He was holding a Ninja Turtle in one hand. The other hand was stretched out. Holding his older brother’s hand. Cooper. He is 11 years old. And…
Read More
I fell this morning. Like a legit fall. I bounced back up quick but I knew I had hurt my knee. I pulled up my pant leg and sure enough a huge bruise was already forming. I’ll also admit my ego was a bit bruised too. Falling. So embarrassing! Thankfully, no one saw me. Or so I thought. Minutes ago I heard a familiar sound coming from my son’s iPad. The Daniel Tiger episode where Miss Elaina gets hurt. I watched Cooper, sitting cross legged on the ground, move his…
Read More
Excerpt from the final chapter (my favorite) of Forever Boy: The words from the professionals ran through my head. ‘Your child will never talk, ride a bike or make a friend.’ ‘Your child has the most severe case of autism I have ever seen.’ ‘If a child doesn’t speak by age four then game over.’ When we reached the end of the road, which happened way earlier than I thought it ever would have, I said no more. The world, society, me…we were all trying to make Cooper into something…
Read More
My sweet boy, This morning I looked back on something I wrote a year ago. About a hard moment we had. And as I sit here, I can’t believe how much progress you have made in 12 months. You are thriving Cooper. You are figuring this confusing world out. And we are figuring out how to balance it all. Walking alongside you. Stepping back when you got it. Paving the way when you need help. It’s a delicate dance. A push pull. I hope we are doing it all right.…
Read More
There is no better photo to share 2 days before Forever Boy is available for everyone. Because it’s a story of a boy. Of a family. Of me. And it’s about autism. But it’s so much more. It’s a story of hope. Hard work. Resilience. Dedication. Love. The story starts before Cooper was diagnosed. The beginning of us. Our marriage. Miscarriage. And then our blonde haired boy. And the confusing years. Then the hard years. Years where we couldn’t leave our house. And we didn’t sleep. And we felt alone…
Read More
Let me tell you about a boy I know…His name is Cooper. He’s the one on the right. Today, we celebrated him. And we also celebrated his brothers. And our family. And how autism is woven throughout all of us. Impacting each of us in different ways. We had a party too. We had ice cream and sprinkles and chocolate syrup and cupcakes. And we celebrated this boy. The one who was born seeing and hearing and feeling and thinking in his own unique way. Some people tried to tell…
Read More