Posts Tagged ‘severe autism’
Today 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…
Read MoreGrowing Older Together
Yesterday, I had an out of body experience. I was walking along the river with my son Cooper and my husband. We had to get him out of the house, which has been nearly impossible to do since COVID. As we walked along, I held his hand. Every few seconds he would pull it away from me to do something on his iPad or point to a duck or flap his arms happily or hold two fingers up to remind me that his Amazon should be here today. I would…
Read MoreThe Choices We Make
Sawyer, Tonight you called me from dad’s truck after your hockey game. I answered, even though my hands were full. You screamed, ‘I scored a goal!’ into the phone. On my end I’m sure you heard screaming. But not in celebration. See I was in the middle of a brutal meltdown with your older brother. A scary one honey. No ones fault. Not his. Not yours. One like we haven’t seen in 15 months. Not since the last time. It was over the mail. And Amazon. And packages. I was…
Read MoreSwinging And Success
There is something about a summer night. We took a last minute family walk with promises to check the mailbox after two slides down the slide and one swing for ten seconds. Well, he nailed the walk and went down the slide three times! And, he swung for over a minute. On a big kid swing. While dad pushed him. Before Cooper I never knew that swinging can be hard. That holding on takes a lot of muscle. And that it would take years just to get him on the…
Read MoreA Life Of Rushing
We are never not rushed. I could tell you it’s the chaos of life, or the fact that we have three busy boys, or a dozen other reasons. But those aren’t the real ones. We are always rushed because our oldest son often struggles when we are away from home. He struggles with sitting and walking and standing still and waiting in line. He gets anxious by the sounds and smells and colors. He gets nervous understanding what is expected of him. It’s not is fault. There is no blame.…
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