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…
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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…
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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…
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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…
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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…
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Let me tell you about a boy. A boy who at twelve years old shows more bravery than most adults I know. But his bravery looks different so most overlook it. He has very few words. Not much for conversation. But his eyes…they tell a story. If you listen to him. Patiently. If you don’t rush him. And wait. He will tell you. If you don’t talk over him. Or speak for him. He will tell you how he hears things louder than you. And smells the faintest smells. And…
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Tomorrow is the 4th of July. A fun, typically outdoor, social, loud, hot holiday. It’s also a holiday that can be very challenging for families like mine. And put a lot of stress on us. See, our older son struggles with a lot of the parts that make up the fourth. He is scared of fireworks, although he loves to watch them on his iPad. The second he hears one, no matter how far away, he takes off running and hides in our pantry. Parties overwhelm him. Most noises are…
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‘Does he understand everything I say? Because sometimes I can’t tell mom.’ My oldest son Cooper was diagnosed with autism at age three. It wasn’t a surprise by the time the psychologist said the words out loud. He had no words. He didn’t play with toys or acknowledge other kids. He flapped his arms and never stopped moving. He seemed to dislike sleep. Technology was his world. It was as if this world made absolutely zero sense to him. Severe, level three autism with a language impairment. That’s what the…
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A young girl encased in a world that requires predictability and a peaceful space finds it really difficult to accept interactions unless she is the one initiating them. When my daughter was little, we had two dogs. She didn’t seem to notice or have a need to be near either one of them. Occasionally, she would allow the smaller dog to lay near her, but she didn’t necessarily connect with him. Both dogs had a sense that they needed to be calm in her presence and would not initiate contact…
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One of the best things I ever did for myself was to put my mental health first and not be afraid to talk about it. Please teach our society that seeking support for mental health challenges doesn’t make someone ‘crazy.’ When I was a kid growing up on the autism spectrum, I saw a therapist for a short time due to my challenging behaviors. Being bullied in school, I would avoid mentioning this as getting help and seeking good mental health was often labeled as being ‘weird.’ Some of my…
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