Archive for November 2018
The Parts of Autism Only We See
I’m writing this at 10 minutes to midnight. I’m lying in my bed with one arm trapped under my 16 kg, 3 year old son, his eyes have finally closed again but his breathing is still jumpy and uneven after his wake up. It is a regular occurrence for my son to wake up screaming and inconsolable. He wakes up so heartbreakingly confused and will often repeat the same phases which make no sense to me but it’s something that must be going over and over in his mind as…
Read MoreChristmas Tree Decorating Done Right
We decorated the Christmas tree today! Super Cooper couldn’t have been more excited. His anxiety about the day started early but we were able to talk through it without any issues. We visited the tree farm, he helped pick out the tree and we loaded it up in the truck…in under 6 minutes. No lie. The people selling the trees laughed at how fast we were. Let’s just say our family knows how to do things quickly. Once home we realized the trunk was too big for the tree stand.…
Read MoreNothing is Normal About Today
I spent this Thanksgiving in Baltimore, split from those I love. Instead I spent it with my son and with families that feel the same aching, haunting pain that I do. We sit as strangers, yet we know each others stories better than our own relatives. For at today’s table, we are reminded of that, as our chairs remain vacant at the homes we have left behind. As life continues stirring around us with no one really understanding what we feel. Expect these strangers I celebrate with today; they do,…
Read MoreMy Daughter, I am Thankful for You
My seven year old daughter, Emmy, sat down next to me this evening and asked me what I am most thankful for this year. She told me ‘Don’t just say family, really think about it. Be specific.’ Without any hesitation…I said ‘You. I am most thankful for you.’ She looked puzzled. Offended mostly. ‘How could you say you’re most thankful for me?! What about Dawson?! Are you not thankful for Dawson too?’ I smiled, and I hugged her tight. Emmy is always thinking about her little brother. Putting his wants…
Read MoreFive Reasons Why I’m Thankful for Autism
Most day I could probably write a longer grocery list of why autism is so hard on us and Zachary, my nonverbal child. If you could make the best life for your child, you would. No questions ask. If I could ease his troubles and anxiety, I would in a heartbeat. Autism has significantly changed my life and perspectives on things. I had thought I was a grateful person beforehand, and maybe I was, but looking back it seems far more shallow. Here is my “grocery list” of 5 reasons…
Read MoreThe Therapist that Changed Our Lives
We have been blessed with literally dozens of amazing people since starting this special needs journey. They all love my son and want him to succeed as much as I do. But for today I want to say how thankful I am that Kayli came into our lives. Max was six months in to his Autism diagnosis, after years of trying to get answers. We were four months into ABA therapy. Our family was going through so many changes. We bought our first home, Max was transitioning to full day…
Read MoreWhat Regression Means in Our World
I want to talk about regressions in our autism world. That word. Regression. A loss of skills. A set back. Starting over. If I didn’t live it I wouldn’t believe it. I know there is a clinical definition. Those never seem to sum it up for us though. A regression is like having the rug pulled out from under you. It’s two steps forward and three steps back. It’s working every single day on using a straw. Mastering it. And then one day, waking up, and not knowing how to…
Read MoreLearning to Acknowledge his Brothers
A glimpse inside our world…Most kids learn by observing others. They watch and learn. Or it’s instinctual. Kids just ‘pick’ up skills. We don’t have to teach them everything. We don’t have to think about every single possible skill that we do as humans and figure out a way to teach them. In our autism world, every single skill has to be taught. We’ve even had to teach Cooper how to learn. How to try. How to play. How to sit. How to care. Skills that are easy for most…
Read MorePreparing for Cooper’s Eighth Birthday
Cooper’s 8th birthday is just around the corner. It’s always a bittersweet time for me. My boy is growing up. And yet, it’s a reminder of where he really is at cognitively, socially and emotionally. It’s a marker in time. A reminder. He will be eight. And yet, he won’t. A week or so ago, Cooper asked me for a party with ‘party, balloons, presents, cake, grandparents, Santa, Santa hat and Christmas tree.’ This is the first year he has asked me for a party. The years before have been…
Read MoreSevere Autism Venturing Out into the Community
Because sometimes you just have to get out of the house! I’m setting a goal of getting out of the house. The isolation is getting to us. It’s been so many years. And honestly, I feel like it’s now or never. We are going to start venturing out weekly. Short trips. Non busy times. Zero expectations. If it goes badly we will just leave. Once a week minimum. Every parent I talk to with older autistic children tells me the same thing. Just start going. And keep trying. I want…
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