Archive for November 2020
Once Again, The New Normal Didn’t Have Room For Us
Normal. Such a funny thing. When I say our life is not, I’ll hear back “Who is really normal?” or “What is normal?” I get everyone is different but when it comes down it, there is such a thing as normal. In some ways we are normal, but in many ways not and haven’t been even before I knew it. I never wanted my kids to be like everyone else. I want them to march to the beat of their own drums. Howl at the moon. Sing when they feel…
Read MoreShielding Them From the Dark
As the parents of a daughter with significant special needs, my husband and I have always tried to shield our two sons from some of the darker realities of Lizzy’s issues. Still, we remain as open as possible so they can feel close and connected with her and her care. If that sounds as if it might be impossible to accomplish, it is. Four years ago, I realized what a fool’s errand it was. Our oldest, Tom, was 17, and was mowing the lawn. Joe and Lizzy were also in…
Read MoreIt’s My Story to Tell
Don’t tell me it’s not severe When it’s MY story to tell. Don’t tell me it’s not severe When I daily live a version of hell Don’t tell me it’s not severe When all you got is something to sell Don’t tell me it’s not severe When there are holes where he fell Don’t tell me it’s not severe When the curve dips low on the Herrnstein bell Maybe the word is harsh? Or profound or extreme? Critical or grave? Or perhaps just plain mean? Do those options please you?…
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 MoreHe’s My Brother
These two had it out last night. Like brothers have been known to do. It was over an iPad. There was a truck involved too. Lots of screaming and wrestling. They were eventually separated. One was put in the bath and told me the whole story, nonverbally of course. He asked for hugs and kisses as his alligator tears filled the tub. The other one, the tough guy, he didn’t need a hug or a kiss. But he did tell, and by that I mean yell, his side of the…
Read MoreThe Beauty of Repetition
How many times have you watched that now? Like many 12 year olds, my daughter struggled to wake on a dark wet morning for school. To ‘soften’ the early start I said that after breakfast and getting dressed she could watch something for ten minutes before school. I knew exactly what she would watch and I was right. She watched the same episode of her current favourite programme for the 23rd time. As I walked her to school she asked if I had remembered her book. Due to current restrictions…
Read MoreMy Brother Jack
I was surprised when I found out my brother Jack has autism. To me he wasn’t weird or odd. That was just him. He always asks a lot of questions, like what color shampoo people used. He asked that one so much that I thought it was something people usually asked each other in a conversation. He gets mad sometimes. He gets mad when there is too much noise. He puts his hands over his ears and screams. He worries a lot. After I found out about his autism, I…
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 MoreThe Nudge that Led to Hope
When covid hit, much like everyone else, our world was turned upside down. Schools closed. Jobs moved in-house. Daycare paused. We hunkered down. We all became overly familiar with Zoom. Parents began to hate snack requests. We rationed toilet paper. And one other thing happened for us. One that I would have never in all my years thought could have happened. Our mental health services for our son Cooper stopped cold. The place that never closed. Never took a sick day. Acknowledged as few holidays as possible…shut down. And to…
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