Posts Tagged ‘autism mom’
Changing the Narrative
The other day I interviewed Joe of Joe James Autistic Awareness & Photography, an autism self advocate and all around cool guy. Each time I chat with him I spend days after reflecting on the wisdom and advice he provides me with. In our most recent interview, at least a dozen time he said, ‘I am autistic and proud.’ And at one point he said, ‘can you imagine if every autistic person said that? How the narrative of disability would change?’ Wow. Think about that for a minute. Right now,…
Read MoreA New Diagnosis
The doctor said it. She said what I knew in my heart was true. I had been waiting over a year for this appointment and she confirmed what I have suspected since Joelle was eighteen months old. But how can something you saw coming still hurt so much? I knew when my second daughter wasn’t meeting her developmental milestones. As a nurse, I saw the red flags. At her eighteen month well visit, I brought up my concerns. When her pediatrician wanted to take a wait and see approach, I…
Read MoreMy Miracle Boy
On May 24th 2020 my entire world changed in a matter of moments. Since my son’s Autism diagnosis in February, I still had not said the words aloud, “my son has autism.” I would use phrases such as “he receives special services” or “he has special needs.” I had not gathered up enough strength to use the word Autism and Charlie with the same breath. I guess in my magical world the diagnosis wasn’t real until I said it was. I am honestly not sure how long I would have avoided…
Read MoreOne Size Fits All
The other day I was scrolling my newsfeed and I came across a picture—a list, really—titled Reality Check. I scanned the points and as usual, my brain went right to autism. I can’t help it. Ever since my son was diagnosed fifteen years ago, I see much of the world through a spectrum lens. Hi. My name is Carrie. I have five kids, and my second son, Jack, is diagnosed with autism. When I was a New Autism Mama, I thought I could just make Jack do the things he…
Read More‘Very Nice Boy You Have Here’
Yesterday my son rode the bus for the first time to school. I was nervous. I thought about getting in my car and following but didn’t because I knew it would be great. When the bus pulled in the driveway after his school day I was waiting as the big doors opened. My first question…’how did he do?’ See, as a mom of a kid who has struggled in the past, and still does at times, I was ready. I’ve built up this armor you could say. Waiting for the…
Read MoreThree “Simple” Words
I love you. Three simple words. Most of us throw them around loosely. Take them for granted. We say them when we hang up the phone. When a loved one leaves the house. When we kiss our little ones good night. Sometimes out of habit. It’s something a mother hears a million times.. over a lifetime. That is unless your child is… NONVERBAL. Then you might never hear it. One of those things that most don’t even think about. I have told my daughter “I Love You” everyday, multiple times…
Read MoreThis Is Independence
Two weeks ago, this kid asked me to ride the bus. Sorta out of the blue. He verbalized it…’H-U-SSS.’ (B’s are hard for him.) He showed me busses on YouTube. He showed me busses in books. He pointed them out in the community. And me, being the mom I am, smiled, cheered, and thought…no way. I’m too scared. He’s too vulnerable. I can’t do it. Nope. But his dad, well he reminded me how I preach about independence. Nonstop. I want my son to make his own choices. I want…
Read MoreHe Did His Best
Today was a big day for this kid and our family. We went to the Afton Apple Orchard. You know the kind with lots of noise and people and waiting and walking. And we went as a family. We invited our friends to come along as well. See in our world, we need help. We know that now. We know our strengths and our weaknesses. And our Cooper, he requires both mom and dad sometimes. We had a lot of wins today. Cooper petted his first llama, sheep, donkey and…
Read MoreWe Are More
You must be sad… I’ve heard that phrase a few times over the past couple weeks. You must be sad your son rides the shorter bus… You must be sad he’s not in the gen ed room at school… And the zinger, the one I felt like a shot was fired and received, you must be sad you will never have a normal life… These statements, they don’t necessarily come from a place of hate or anger. They come from a place of misunderstanding. They simply don’t understand. I am…
Read MoreThe Stories We Share
We are just a few weeks away from celebrating the 6th anniversary Henry’s autism diagnosis. We celebrate now, but back then it was a different story. Six years ago, I was nervous and confused. I can admit it now, but I knew nothing about autism before his diagnosis. It’s hard to believe because autism is now my life and my work. But yes, at that point, I knew nothing more about it besides a few characters in TV and movies. Henry had a lot of the textbook signs back then:…
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