Posts Tagged ‘severe autism’
When People Stare at you
I used to get so upset when people stared at you. You’d be flapping. Or making happy noises. Screeches. Grunts. High pitched screams. One second you’d be on the floor and the next running only to drop to the ground, roll, laugh and pat the ground. Or you’d be melting down. Screaming. Either way it almost sounds the same. Loud. I’d look around. Make eye contact. And look away. I’d think in my head, stop. Stop Cooper. Stop drawing attention to yourself. To us. Everyone knows. But it’s not for…
Read MoreTell Them He’s Autistic Mama
We were swimming in the pool at the hotel. It was our fourth time in two days. My boys love water. It’s the one and only activity that the two oldest will actually do together. It’s also an activity that we can all enjoy. We would spend all of our time in the pool if we could. Sawyer is always drawn to other kids. He’s been that way his whole life. If he sees a little kid enter the water, he will be with him or her. Cooper, he’s oblivious.…
Read MoreTo the Mother with her Adult Son at Thomas the Train
To the mother with her adult son at Thomas the Train: You had the oldest child here. I’m guessing he was 25. Your son was tall. He was a man. He even towered over you. I saw him immediately when you arrived. He was practically levitating he was so excited. It was like he had an aura around him. His joy. It radiated. He ran in. Loud. Arms a moving. He ran right up to Thomas and started chatting to himself. Fingers stimming. Head down. Twisting back and forth like…
Read MoreThe Message The Today Show Sent about Healthy Babies
If you run in the special needs parenting circles you’ve heard about the segment The Today Show did on how big of a relief it was for the former Olympic gymnast Shawn Johnson and her husband to get the test results back that their baby did not have Down Syndrome and was “genetically healthy”. I actually was watching The Today Show the morning it was aired. One thing I thought was a bit distasteful was how they were teasing it up in the promos. Like, tune in, hopefully there is…
Read MoreWhat it Could Be
A long time ago, back before the diagnosis, before autism was a word in our vocabulary, I had a little boy. He was two years old. He had blonde hair and hazel eyes. He was busy. So busy. He never stopped moving. Sometimes not even when he was sleeping. He was rarely happy or content. He screamed in the car. He screamed when we were outside. He screamed in restaurants and stores. No matter what we did, he wasn’t happy. I knew something was wrong. But I didn’t know what…
Read MoreYou See a Boy and a Baby
You see a boy and a baby. It’s so much more than that. I see an 8-year-old boy and a 9 month old baby. Brothers. The boy is sitting in his driveway. Outside. Near a road. Safely. Sitting. He isn’t running. He isn’t eloping. He is calmly sitting. Next to his baby brother. A baby brother who is touching him. Leaning into him. Reaching for his tablet. Touching his arm and his leg. If you could hear you would hear Barney singing the ABC’s. The boy is babbling about the…
Read MoreIf it Never Gets Any Better…
Part of me started to believe it was going to be really hard forever. Part of me started to only know how to live in the intensity. The chaos. I learned how to manage. How to react. I found happiness there. It was my normal. I could handle it all. The running. The self injuring. The screaming. I perfected ‘first-then,’ token boards, timers, a speech device, therapy, calm body-calm hands, family skills…you name it. I could do it all. I made your happiness the center of my world kid. Willingly.…
Read MoreCoping with Autism
I’m an optimist at heart. I really am. So, when I got the diagnosis of autism for my daughter I remained hopeful. She was two then. I had actually known she had autism since she was 10 months. At 10 months Antoinette never looked at me when I made a sound. She never made eye contact. She never cried. Crying is a form of communication. She wasn’t communicating. I watched my daughter and thought to myself “she’s a genius, that’s what this is.” I told myself that daily. Three years…
Read MoreNo Talk All Action
The red shirt that Brian has worn everyday for the past 5 years (we have 4 of them) says “No Talk All Action”. It is not just a slogan, it is how he lives his life. My younger daughter Catie was upset one night last week and was in tears sitting on the couch between me and my husband. Brian appeared from the other room and came over to Catie, wiped off the tears on her face, and hugged her until she stopped crying. He would not leave her side…
Read MoreSometimes I Forget
Sometimes I forget. I know I shouldn’t. I mean, come on, it’s been 8 years. This isn’t necessarily new. And it’s been a long 8 years at that. It’s been so much trial and error. We’ve moved. We’ve seen countless doctors, therapists, and educators. They all say the same thing. Autism. And then severe autism. After that nonverbal autism. Level three and then level four and back to level three. Apraxia. Severe intellectual disability. Anxiety. In a way it’s like our life became checkboxes. Words on an evaluation. I always…
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