Archive for September 2020
Every Autism Mama
I’d like to take a moment, and introduce you to an autism mama. You’ve seen her before, pushing a cart in the grocery store, or holding hands with a teenager in the parking lot. She usually looks tired. Maybe her mouth is pressed into a thin line, her skin a papery white. This autism mama, she might come across as impatient, or abrupt at times. Try not to take it personally. She has formed a kind of shell, you see—a layer to protect herself against well-meaning comments about behavior and…
Read MoreAn Apology to My Children
To my children – my little marvels, I am writing you this letter to tell you how sorry I am. But first and foremost I want you to know that I love you. You may already know by the time you read this that I am not the best communicator. I am generally quite articulate, I use long words and I can talk about complex issues. However, I am not good at making general conversation and I do not find it easy to talk about my feelings. Both of these…
Read MoreLook For the Silver Lining
So many things could be said about the lack of “sunshine” surrounding a diagnosis such as Autism Spectrum Disorder. It’s labeled as rigid. And scary. And lonely. And most people (including us early on) are uneducated about ASD. Simply because it is thought to be almost “taboo”. In our case, we went through all the stages of grief (denial, anger, bargaining… all of them). Then you do yourself a favor, and you arm yourself with knowledge. Suddenly, the sky clears up, and you come around to the “acceptance” stage. I…
Read MoreSomewhere in the Middle Of Hope
Most days you can find me somewhere in the middle of hope at the intersection of not knowing what I’m doing nor where I’m going. This is the life I’ve grown accustomed to-the autism life. Covid-19 isn’t my first “new normal” receiving an autism spectrum disorder diagnosis for my son three years ago was. In an instant our priorities and responsibilities changed, our entire world was rocked as we knew it by autism. My son Stalen was diagnosed on the spectrum at twenty-one months. He is considered non-verbal. Today, he is a…
Read More“You Need To Calm Down”
Yesterday I decided we needed to get out for one last summer weekend…take a chance with masks, and take a chance with the world. Going out is never simple. Johnny’s mood, my mood, his little sister’s mood, are all factors. For Johnny it’s the hardest, he finds the world difficult. It’s uncomfortable and unpredictable. We went to an outdoor mall that has a farmers market in the summer. As always, there were ups and downs but it was good. We bought veggies and treats. We wandered and spent time together.…
Read MoreSilence
Early this morning, I took my middle son, one of the twins who is Autistic, with me to run some errands. I did my usual commute to town which is about thirty minutes away. I went through the drive thru and grabbed an iced coffee, went to our pharmacy for medications and then I grabbed some breakfast. As I was in the last drive thru for the morning (which was crazy long), I started to ponder to myself… Wow it’s so quiet in this car. I thought back from home,…
Read MoreI Hear You, I See You, You Are Strong
I hear you. I see you. During the pandemic my son with Autism has really regressed. Oppositional Defiance Disorder has come to live in our home and it in itself, can break you down. From the second my feet hit the floor I am on high alert every second of the day. I don’t shower without another adult to watch him, I can’t use the restroom unless he is with me and you NEVER turn your back. I did that for three seconds last week and it ended in a…
Read MoreDo You Ever Wonder?
“Do you ever still wonder what he would be like if he didn’t have Down syndrome?” She asked. It was an honest question from a new friend. She is several years behind me in this journey of parenting a child with Down syndrome. I vividly remember being where she is now. I remember feeling like the odd one out amongst family and friends- I was the 20-something who had a child with a disability. I watched as their children hit the milestones at the appointed time on that now dreaded…
Read MoreBig Changes
Things have a way of changing rapidly in our world. Today, this amazing kid started school. The same school as his brother. He is in 4th grade. I never thought this would happen but we got a little nudge from the universe. And it turned out to be a good one. I cried. His dad cheered. His brother was so excited. And he was too. He dressed himself, put on his own backpack, let me gel his hair, negotiated how many treasures he could bring to school, and made his…
Read MoreOur Secret World
Happy Sunday from this kid. We’ve had an interesting day. He asked me for a train guide from 2007. I told him I’d do my best but reminded him that he was most likely setting me up for failure. He asks me for the most obscure things. He had faith in me though. I know because he asked me well over 100 times. He also asked me to go shopping. And for amazon. And paper. And Target. When the Amazon van drove by I knew we were in trouble. I…
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