Autism
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 MoreNever Ever Give Up Hope
Our family’s number one goal is to get in the community together. It’s never really happened. Well, not successfully. But we refuse to give up. Tonight, our middle son had flag football practice. I wanted to go. My husband wanted to go. We wanted to get the other two boys out of the house. So, we did it. Cooper’s motivator and encouragement…two (not one!) vintage train magazines from eBay. His most favorite thing in the world. We stayed an hour. I have never, in nine years, been more proud of…
Read MoreBeing Invisible
There are many beautiful things that I was gifted when I entered the world of special needs. Things that most people outside of our world know nothing about. Because they are unique to us. To our world. There are honestly to many to list. But one that rises to the top is that I get to see the people who see Cooper. One would think that a 9-year-old boy who dances in the rain and wears brightly colored leggings couldn’t possibly be overlooked. But it happens every day. People hear…
Read MoreDoctors And Nurses: Thank You
This little peanut had an outpatient surgery this morning. Nothing too serious. But nevertheless it needed to be done. I want to say the hugest thank you to Pediatric Surgical Associates, LTD and Children’s Minnesota for providing outstanding care. Harbor was charming, patient, darling and easy. It went as smooth as it possibly could have. And everyone was so kind to us. For anyone who has followed us for a while, you know that my older son Cooper is no stranger to different procedures. This mama has spent many hours wandering the halls of…
Read MoreYour Ups And Downs
Some days I wish I could just press reset. Or snap my fingers and make life easier for you. But I can’t. It doesn’t work that way. Instead it feels like ups and downs. Today you had an amazing speech session. The best in months! I think we gave you a hundred high fives. But then when it was over you dropped to the ground in the lobby and refused to get up. It was hard. It was over paper. You also kept a bandaid on your toes. You are…
Read MoreThe Future Of Autism
When my son’s autism was discovered at age three, I focused on the present. I dove into getting him all the help he needed. And our family too. When he was six, I started to think about the future. About forever. But I wasn’t ready yet. And many people told me not to think about it. They told me to wait. To take it day by day. Now that he’s nine, almost double digits, I can see the future with some sort of accuracy. I like to say we all…
Read MoreWell-Child Visit
This little guy and I just came from his 18-month well-child visit. He’s 22 months actually so I was late. But only by four months. Not too bad if you ask me. I blame Covid. But really it’s because life is crazy and he’s healthy and we are all thankful to be able to avoid the doctor’s office right now. I have two other boys too. Cooper is 9. Sawyer is 7. I don’t remember any of Sawyer’s baby visits. I think because they were easy. He was easy. He…
Read MoreThe Things I Wonder
Kid, I spend a lot of time thinking about the things you cannot tell me. There are little things. Like why you point to certain clouds or put your ear up to the wind and laugh. There are big things too. Like why you hit your head in frustration. Does it hurt? Do you hear something I cannot? I wonder why you like trains so much. I wonder why you carry the DVD cases but don’t watch the movies. I wonder if you are lonely. I wonder if you get…
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