Archive for September 2020
New 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…
Read MoreAutism Is A Train
Sometimes I think of my son’s autism as a train. Which is fitting because he loves trains. He stands out and he is unique and loud and messy and amazingly awesome. Like a train. I mean, not everyone would choose to ride one either but when they do…I’m pretty sure it changes them forever. Because trains are the best. So, here we are, chugging along. Often slowly. It typically takes us a while to get going too. Sometimes we stop. But we always start again. The key being…we move forward.…
Read MoreLetter Of Intent
In the last week I have had two parents of teenagers on the spectrum tell me to write a letter of intent for my son. Before this week I had never heard that term. A letter of intent is a written document that will tell someone everything they need to know about Cooper if something happens to Jamie and I. It’s not a legal document but more of a guidebook. At first I was sad just thinking about it. But you have to get passed that part. You have to…
Read MoreMissing You
Today was different. For the first time since March, I let out the breath that I didn’t know I was even holding. COVID sure changed everything for us. When I entered the world of special needs parenting nine years ago, no one told me about how much it would change me. And demand so much from me all the time. So much so, that I’ve forgotten how to live any other way. They also didn’t tell me that I would get to enter a secret world. A magical one. One…
Read MoreGetting A Win
When I was first approached about joining Miracle League Baseball with my son, I said no way. Nope. It will never work. But my dear friend convinced me that it’s a blast and worth it and that I wouldn’t have the only ‘spirited’ child who refused to play. So, we joined. And it’s been amazing for our family. I have made friends, been humbled numerous times, and laughed out loud. Like tonight for example… A young gentleman told me I looked like his grandmother. The third baseman didn’t want anyone…
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