Sometimes something small will remind me how far we both have come on this journey. My autistic daughter loves getting a mani/pedi. She comes with me to every appointment. She looks forward to it and she loves going on IG looking at nail colours for her upcoming visit. It wasn’t always this way. In fact, my daughter used to struggle with outings. There were stretches of time we didn’t/couldn’t leave our home. Salons are loud. They are always full of people with music playing tools running and all of that…
Our family has settled into life with autism. We know that when we go on an outing we need to be prepared for all scenarios. Honestly it has become second nature. It is how we operate. We accept it. Last night I was watching a TV show. It was featuring a family of four who were preparing to move ‘off the grid’ in Alaska. Their oldest child was maybe seven or eight. Their youngest was around two (a year younger than Lexi). As I was watching this family with their…
Nobody ever told me that when I brought children into this world that there was a possibility that I may have a “forever child”. Of course, all three of my children are forever mine. However, one will forever be with me until I can no longer care for her on my own. Nobody ever told me I would teach my child to talk and that I would hear those words come from her early. I would see small gestures come from her tiny hands to accompany those words…only to have…
Cooper, Last night you were upstairs with your brother. It was long past your bedtime…which for Sawyer isn’t strange. That kid would stay up all night long. But not you typically. You have an internal alarm that tells you when it’s 9 pm and it’s game over. Up to bed you go with 7 blankets and a pile of treasures so high it takes you two trips up the stairs. But last night was different from some reason. I heard your sounds first. Laughing. Squeals. Little screams. Hums. Giggles. You…
I don’t know if my son has anyone who considers him their friend, besides his cousin. If you ask Jesse who his best friend is, he says, “Lukas.” It’s not always mutual though. Although, it used to be. My son is autistic and eight years old. He is 18 months older than his cousin. When he was a toddler, he used to adore his little baby cousin, Lukas. They grew up together as toddlers and littles, wrestling and laughing. And Lukas looked up to J as his big cousin. He…
Every night I lay with my son until he falls asleep. I’ve done this since he was a baby. I sneak out of his room and reset our home for the next morning. Tonight while we were laying down he said to me. “You cried in the month of June, on a Thursday, you ran away to the sun room, and I came to tell you sorry.” I said “why did I cry buddy?” He turned his head to face away from me on his pillow and replied “because I…
I don’t think we talk about our fears enough. I know when I do, as a mom to a nonspeaking boy, my fears are often brushed aside. Or downplayed. And I think it’s because fear makes people uncomfortable. Or they want to fix it. But there isn’t always a solution. Acknowledging our fears forces us to go to that uncomfortable space. But the older I get, I am learning to lean in. And share. So here goes… This morning my 12-year-old nonspeaking boy with a big diagnosis got on a…
The comment read, ‘for some families, there is no light at the end of the tunnel.’ I thought about it all night. And when my toddler woke up at midnight for a hug, and then again while I drank my coffee and watched the news. I thought back to our hardest days when there was no apparent light at the end of the tunnel. Our autistic son didn’t sleep longer than 45 minutes at a time and we started every day at 3 am. We lived in this place of…
Did you know that July is Disability Pride Month, a time to celebrate the achievements and strengths of people with disabilities? It’s also a month to remind people of the spectrum; to educate them that some with disabilities face lifelong difficulties and need support. This was started in 1990 adjacent to the Americans with Disabilities Act, signed on July 26, 1990. The ADA is a civil rights law that prohibits discrimination based on disability and seeks to ensure equal rights and opportunities for people with disabilities. Now people worldwide observe…
From the very beginning of it all, you have been mine. My heart outside my chest. And I’d have given anything to be your person. For so long I prayed to be given a glimpse into your world. I just wanted to sit next to you, and you not shy away. I wanted to play next to you with bubbles, cars and blocks, and not cause you to shift activities, preferring your own company. For so long I was losing sleep, worrying that we wouldn’t ever be able to be…
