I often catch myself thinking, if only I was a fly on the wall. I’ve uttered those words to your therapists after they share the celebrated moments of your morning. Moments you have worked so hard for. Harder than most. Moments like when you said ’swing’ for the first time. Tried a strawberry. Waved hello to another child. Pointed to the object when asked, “Where is the…?” Hugged a stuffed animal. Moments I thought I would witness first. Moments I thought would happen with me. Precious child of mine, I…
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Imagine living each day surrounded by reminders of the challenges you face. School, and therapy, and even Mom and Dad, all well-intentioned but whose best efforts revolve a great deal around examining those challenges, and how best to address them. And then there’s baby sissy. Who by all accounts doesn’t understand that Leo is considered “different” by some. She doesn’t see challenges, delays, or stims, or even lack of language as a negative…Instead, she hangs on every one of his vocalizations. Every stim and every move he makes. She doesn’t…
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Let’s talk about the “R” word. I hate this word. I hate that this word has become a norm for people to use, whether intentionally or jokingly. The R word is hurtful. The R word is mean. We’ve all said it. I’ve said it. Before I had Gracy, I was guilty of using this word as a way of lazily describing my feelings…how I felt about something or how I felt about someone. This all changed for me eight years ago. At 30 weeks (I think) pregnant, I was told…
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He was sitting in the chair watching tv – just like any other 7 year old boy – and for just a moment it broke my heart because he isn’t like any other 7 year old boy. He has autism. He doesn’t talk. He can’t always make his hands go where you tell him to. He can’t tell you where he hurts. He isn’t potty-trained. There are so many things he can’t do – might never do – and if you start thinking about it, ‘what he can’t do’ can…
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A few evenings ago I finally took the leap and joined an online Autism support group that I’ve been eyeing up for a very long time. It’s a smaller, more personal support community called Coops Troops, filled with interviews, live chats, videos, supports and resources for a small monthly fee. I had put off signing up for so long and kept finding myself pulled back to it; Coronavirus isolation pushed me to jump on it. So I leapt, finally, and with much excitement. I did not know that I was…
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He is anxiety and rigidity and obsessiveness, cloaked within the velvet robes of a diagnosis. But first, he is a boy. He is letters on a page—black and white sentences with a lot of punctuation, and big, big words. Autism Spectrum Disorder. Poor executive functioning. Low muscle tone. He is a walk around the neighborhood with a lot of complaining, and a visual schedule taped to the desk. He is ice-cold soda in a tall plastic cup, and pizza from the same pizza place every Friday night. Always the same.…
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Parenting Autism is hard. Parenting Autism during a world wide pandemic and quarantine is nearly impossible. But, first, I need to start with this. For all of my well meaning friends and family who will comment something along the lines of: “You’re amazing and so strong. I don’t know how you do it.” Please. Don’t. I appreciate it – more than you will ever know. But first, I’m far from amazing. Second, I didn’t pick this life. It was assigned to me by some universal random number life generator (that…
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In this time of great uncertainty during the Covid-19 pandemic people are forced to educate their children from home. Some are calling this homeschooling, but in reality, this is crisis schooling. Homeschooling would look much different. Crisis schooling is what we have been thrown into without a choice and forced to figure it out along the way. Some may be enjoying it. Others may be enduring or just getting by. I think we are somewhere in-between. Both Tyler and I are considered essential employees at our jobs. I’m lucky enough…
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A mum sent me a message earlier, about grief. Grief and autism. It may sound morbid, and it may not be the same for everyone, but this is absolutely a thing to me. When my son was diagnosed, I did cry A LOT, I cried any chance I could really, any time I was alone or any time the kids were all asleep at night, I cried. I guess I still do, only now it’s not the same kind of cry… To be told something so impacting, so unknown and…
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I stood at the stove the other day, stirring some soup I’d made from leftover Easter ham. My son Jack sat at the counter, reading the back of a DVD. It was a warm day, and the kitchen was bright with late-afternoon sun. If you were to look in our window, you’d probably think we were an ordinary mother and son, enjoying some quiet time before dinner. But things are rarely as they seem. Are we imposters? No, not exactly. We are simply trying to play an unexpected role—me the…
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