Archive for April 2020
First, He is a Boy
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.…
Read MoreThe Hidden Life We Live
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…
Read MoreLessons From A Crisis Schooling Mom
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…
Read MoreLost in the ‘Possible’
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…
Read MoreWhat I Want You To Know
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…
Read MoreThe Way He Did Today
Something happened today during our homeschooling session. It’s been five weeks since he last went to school. We have talked about the whole COVID 19 lockdown situation a couple of times since all this started. Today, his teacher sent a new social story and asked me to read it to him. The picture of the school building in the story looked a lot like the school he goes to. As I was reading it with him, I saw that he had started crying. There was no sound, just tears trickling…
Read MoreEvery Part of You
I stand in the darkAt the side of your bedBeckoning your anxiety away Reassuring you I’m here-You’re safeYou’re lovedYou’re not alone Midnight hours tick away The morning will soon greet us I askAre you feeling sickHurtAre you afraid My questions are met with your silenceLeft suspended in the air You fall asleepBut not for longSleep never visits long I’m at the front line Fighting your silent warA war-Locked somewhere deep inside of you Sometimes its not so silent Its loud screamsHiding in small, dark spacesHysteriaHead bangingDangerous Self harmingEloping Isolation Sometimes there is no warIt’s Thomas the…
Read MoreConversations with a 4-year-old About her Brother’s Autism
A few months ago, Charlie, my 4-year-old daughter, yelled from across the room, “Mommy, look!” Her older brother, who doesn’t tend to pay her much attention, was hugging her. She said, “Does this mean he loves me now?” My heart broke. Confession: I am a bit of a hypocrite. I advocate for autism awareness and everyone talking to their children about autism and I really hadn’t done it myself with my neurotypical child. We talk about differences and kindness and why everyone we meet is special, but we hadn’t had…
Read MoreMy Sweet Boy, Mama is Happy
My Sweet Boy, Last night we went for a walk around the neighborhood. It was supposed to be me, you, your two brothers and Dad. A family walk. But, well, it didn’t go as planned. But what does these days I guess. If autism and a global pandemic has taught us one thing it’s…’hold on.’ I wouldn’t say it’s been all bad though. I would even dare to say that our family has gotten stronger through all of this. Spending 24 hours a day together for eternity will do that.…
Read MoreIsolation, Distancing, Learning: We’ve Been Here Before
The world has shut down. We’re under stay-at-home orders. Because of a new virus that can be fatal, we’re forced to stay home until it’s contained. We have to stand six feet away from other people if we go anywhere. We have to homeschool our children because schools are closed until further notice. Doctor appointments and therapy are held over telemedicine video calls. This all seems a little too familiar. I remember how hard it was being stuck inside for extended periods of time. I recall my kids having therapy…
Read More