Posts Tagged ‘autism parenting’
It’s Not About Blame
She paused mid-sentence, an empathetic tone intervening as she spoke words she’d probably uttered a thousand times before to parents throughout the years. She seemed to understand the importance, though…the nuance in her voice conveying the magnitude of her message, while she made certain to catch my gaze and connect, despite the limitations surrounding our telehealth appointment. “Even if we find that there is a genetic explanation for Leo’s Autism and epilepsy, it’s important to note that this isn’t about blame…” Startled by her candidness, I nodded, silently providing acknowledgement…
Read MoreHis First Christmas Concert
I got to be a fly on the wall again today. For my son Rory’s first Christmas concert. I told him I would be there. I went over the day with him as I do. But he didn’t seem to have any understanding of what I was telling him. My girls, however, knew exactly what I was talking about. “Mum, I want to come to Rory’s Christmas concert! Mum what are his lines? Mum what song is he singing?!” The urgency in their excitement reminded me of just how different…
Read MoreThe Year We Were Normal
2020 has been a hard year for most. Filled with uncertainty, fear, confusion, sleepless nights, isolation and more. We call that a Tuesday in our house. Truthfully not too much has changed in 2020 for us. Yes, we have less appointments and therapies, but the fear, the isolation, the constant anxiety. That’s every day for us. Now there is talk of an end, a vaccine, a possible return to normal. People of course are debating it but the end goal of all of this, is a return to normal. Dinner…
Read MoreI am a Forever Mother
All five of my kids have really peculiar teeth. Which is kind of ironic, seeing as my husband is a dentist. Missing laterals, crowding, odd bite patterns—we’ve got it all. My son Jack has what is called a class three underbite, which means his lower jaw comes out much further than it should. He’ll probably need to have a lot of teeth pulled. And there is a surgery to correct the whole thing. It is big and long and complicated, with a very difficult recovery. We could never put him…
Read MoreThe Deafening Silence
My son Knox, five, lives each day with non-verbal autism. He has said some words, many sounds, but there is no consistent voice for him. Consistently, there is a deafening silence. A silence that makes my heart drop with each unanswered question I pose to him. A silence that is so loud, it makes me want to scream in pain. Scream in pain for him, for me, and for the voice that our family so longs to hear from him. A silence that is so deafening, it is all I…
Read MoreA Letter to the Mama Who Gets It
How would it feel to meet someone who knew every part of your story, before you told them? How would it feel to meet someone who lived your story, when all along you thought you were the only one? How would it feel to meet an old friend, for the very first time? You and I, we are the same. We learned early on that the journey of a special needs parent wouldbe a lonely one. We each have wonderful friends that choose to loveour children. We have families that…
Read MoreHow You Found Your Smile Again-A Letter to Jack, My Autistic Son
It’s been seven months since the world stopped. You were so sad in the beginning. You didn’t want to get out of bed, and you didn’t want to play. But the most shocking thing was this: you didn’t want to watch movies. Do you remember that? It was the first time this has ever happened. The sweetest thing in your world seemed sticky and irritating. It was confusing for you, and for all of us. Miss Janell would probably call it “topsy-turvy.” This kind of thing happened to a lot…
Read MoreBucket List
Have I told you all that I made a bucket list for our family? For 9 1/2 years we were mostly homebound. And in those 9 years we worked on things like safety, waiting, sitting, standing and communicating. The progress felt painfully slow at times. But his hard work, ours too, is starting to pay off. Last week we visited a zoo! The week before that it was a pool. Today, it was an aquarium. A real aquarium with sharks and sea turtles and string rays. The place was deserted…
Read MoreA Letter to My Wife and All Special Needs Mothers
To the wives, the girlfriends, and the mothers: We haven’t said these three simple words often enough… We see you. From moment one, mother’s of our children, we watch as you push grief to the side and take the lead at the moment of diagnosis. You run like a prized thoroughbred, determined to secure therapies, counselors, and doctors. Searching for the opportunities that will ensure a better life for our babies, despite the chaos. You are miracle workers, moving mountains by sheer will, even when we, the husbands, boyfriends, feel…
Read MoreA Trip to the Zoo
We just returned from an outing with just our older son. It was his day to get spoiled by mom and dad. For the first 9 years of his life he didn’t really care about outings or gifts or getting spoiled. But slowly over time he has started asking us to go places. Some are not doable…if anyone knows how to get Dora the Explorer to our local fire station please let me know. He’s asked my daily for months now. I’m not sure how long…‘mommy’s trying’ is going to…
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