Posts Tagged ‘severe autism’
Having Success
Proud mama moment! We visited our favorite place today, The Twin City Model Railroad Museum. When we got the email earlier in the week I had mixed emotions. My first thought…YES! Cooper has been asking every day to visit. But then immediate worry. Masks are required. So, we started practicing that night. Ten seconds at first. Then 30 seconds. We tried different types of masks and found this style to work the best for him. It goes around his neck and he is in control of pulling it up and…
Read MoreThe Many Faces Of Anxiety
In this house anxiety is always present. It is attached to a little boy with blonde hair and hazel eyes. Some days it may hide, not showing on a cute picture, but on most days, it follows him like a shadow, waiting to remind us that it indeed rules. Today, anxiety is one sleep until the train museum. Yesterday, it was two sleeps. A week ago, seven sleeps. Anxiety is the calendar in our kitchen. TRAIN MUSEUM written in big blue letters. We talk about it a hundred times a…
Read MoreYou Are His Home
Sawyer, you’ve asked me a lot of questions over the years about your older brother. You’ve asked me why he doesn’t talk. You’ve asked me if you are the older brother. You’ve asked me if you could have autism too, like him. You’ve asked me who is going to care for him when mommy and daddy are gone. And recently, you asked me if Cooper knew you were his brother. I told you of course. I said without a doubt he knows. But I know you still wonder. You want…
Read More‘I Hear You Happy’
Cooper, Last night you were upstairs with your brother. It was long past your bedtime…which for Sawyer isn’t strange. That kid would stay up all night long. But not you. You have an internal alarm that tells you when it’s 9 pm and it’s game over. Up to bed you go with seven blankets and a pile of treasures so high it takes you two trips up the stairs. But last night was different from some reason. I heard your sounds first. Laughing. Squeals. Little screams. Hums. Giggles. You are…
Read MoreThinking in ‘Nevers’
When my son was diagnosed with autism six years ago, I began to think in nevers. Now as a typically very positive person, it felt strange. It felt unlike me. But, that’s how the people around us spoke about autism. Your son will never talk. He will never ride a bike. He will never make a friend. I could go on an on. He will never have a normal life. He will never live independently. Never, never, never. With each evaluation for services, benefits and placements, the nevers stacked up.…
Read MoreCaring For Brother
Tonight we took a boat ride. Sawyer brought two friends. A brother and sister who are very much a part of our family. The big kids, Cooper included, all wanted to sit in front and scream at Jamie to go faster. They were also supposed to watch for logs but that part didn’t happen. As we boated along we hit some rough water. It only lasted a minute or so. Pretty common on a Friday on the St. Croix River. Anyhow, Cooper squealed as a bit of water splashed in…
Read MoreCelebrating Victories
I used to not be good at celebrating victories. I was so hyper-focused on everything my son had to learn that I lived in this crazy place where I kept thinking about what I needed to teach him next. Almost like a checklist. And I’d tell myself…when ‘this’ happens, then we will celebrate. When he starts talking or when he does whatever. It came from a place of love and devotion to help him. I wanted to help him so badly. But because of it, I missed a lot of…
Read MoreBalancing Work and Parenthood
Last night this little peanut snuck down the stairs after he was supposed to be sleeping. He peeked his head around the staircase and said, ‘mama, when are you going to bed?’ I told him after the news but he didn’t seen satisfied with that answer. ‘I never see you anymore because of your dumb job. You are always working lately. I miss you.’ And with that he was down the stairs and in my arms asking to sleep in my bed. It’s bizarre lately. I am with my babies…
Read MoreIn the Search For Sleep
We chase sleep this kid and I. One of us loves it. The other one not so much. Although he never misses an afternoon nap with his seven blankets and train magazines. I call him a 90-year-old man every afternoon. But the nighttime sleep, he doesn’t love it so much. He goes to bed great…always has. But his preferred time to wake up is 3 am. He comes in my room, touches my shoulder to let me know he’s awake and then he wanders downstairs. I can hear him, my…
Read MoreBalance and Progress
We just went for a family walk plus two. Cooper knew there was a train magazine waiting for him at the mailbox so even though it was not ideal walking, (90 degrees!) we got a good walk into the park before getting the mail. Before we stepped off the porch, Cooper grabbed my arm to get my attention, covered his ears with both hands, and pointed to the sky. Fireworks. He was scared. I think about his world sometimes. Fire and noise in the sky. Scared to step off the…
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