Autism
An 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 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 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…
Read MoreNew Autism Mama
My name is Carrie. I have five kids and my second son, Jack, is diagnosed with autism. Jack is sixteen. I have lived alongside autism for twenty minus four years. I believe this makes me an Old Autism Mama. I’ve seen things. I know stuff. I have a bank of memories that would curl your hair, like the day he started the car when he was four, or when I lost him in the mall because I was trying on a sweater. Even though I am an Old Autism Mama,…
Read MoreThis Kid is a Keeper
Someone once said to me…’siblings to children with disabilities are not special. And they shouldn’t be treated as such.’ I’ll tell you this…in all my years of sharing on social media, very few statements have bothered me as much as that one. I adamantly disagree. This kid. His life is different. Not bad by any means. Wonderful if you ask me. But it’s different than most of his peers. He sees and hears and experiences things most people never will. And we choose to call that a blessing. We work…
Read MoreA Perfect World For My Son
I think a lot about the things that make this kid happy. And bring him joy. Because for a lot of years, the list was pretty small. It’s gotten bigger though, thankfully. If I was to build a world for him, one that was entirely for him…what would it look like? Well, it would be full of color. Bright reds and blues and yellows. Our clothes would all be bright too. Our houses and the objects inside as well. Music would always be playing. Happy, fun, LOUD music. We would…
Read MoreTo My Son’s Hopefully ‘Never Needed’ Caregiver
Have you written a letter of intent yet? It is a letter written to the person who will take your child if something happens to you. Here is mine… To whom it may concern; Except you’re no random person. You were carefully and specifically asked to take on this huge responsibility. It will undoubtedly be the hardest thing you’ve ever done as it has been for us, and there is an immeasurable amount of gratitude and thanks to be given to you. But I’m sure that’s already been taken care…
Read MoreToday Was A Good Day
Many of you have reached out and asked how Cooper is doing. Thank you! He is amazing. He is struggling but he’s coming out the other side and that is what matters. He works hard to be in a world that doesn’t always understand him or make sense to him. And that’s amazing. The last two weeks have been all hands on deck. But the last two days have been happier for him. And that’s what matters. Today was a good day. Today he snuggled with his grandma and watched…
Read MoreThis Is Regression
This is the hardest week I remember in a long time. This is regression. This is aggression. This is self-injuring. This is our hardest hard. This is all hands on deck. This is researching, brainstorming, spending every waking moment trying to figure out what and why. This is phone calls to doctors, questioning med dosages, trying to figure out the mysteries of autism, cursing nonverbal, and worrying. This is praying and sleepless nights. This is losing him. This is fighting for him. This is putting safety plans in place. And…
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