Posts Tagged ‘autism and nonverbal’
To the Woman Who Stayed
To the woman who stayed… A week or so ago I found myself in a pretty tough situation out in the community. We were at an orchard with our family and friends. My son Cooper decided he was done. He was done with the apples and the tractors and the noise and sounds. And walking. Which is fine. He had done amazing. Except we were a mile away from the exit. His decision came out of nowhere. And we were stuck. My sweet misunderstood boy is 9 years old. Almost…
Read MoreOur Biggest Day
Lately, I’ve been sharing a lot of firsts for my son Cooper. Tonight, was the biggest one yet. He and I sat and watched an hour long flag football game together. He sat. He watched the timer. (Two 25 minute half’s is a long time!) He waved at his brother who was playing. He held my hand. He asked my 486 times for trains. And we were present. Together. A family of five. This wasn’t just any first. This was a first we have worked towards every day of his…
Read More‘Very Nice Boy You Have Here’
Yesterday my son rode the bus for the first time to school. I was nervous. I thought about getting in my car and following but didn’t because I knew it would be great. When the bus pulled in the driveway after his school day I was waiting as the big doors opened. My first question…’how did he do?’ See, as a mom of a kid who has struggled in the past, and still does at times, I was ready. I’ve built up this armor you could say. Waiting for the…
Read MoreWe Are More
You must be sad… I’ve heard that phrase a few times over the past couple weeks. You must be sad your son rides the shorter bus… You must be sad he’s not in the gen ed room at school… And the zinger, the one I felt like a shot was fired and received, you must be sad you will never have a normal life… These statements, they don’t necessarily come from a place of hate or anger. They come from a place of misunderstanding. They simply don’t understand. I am…
Read MoreThe Stories We Share
We are just a few weeks away from celebrating the 6th anniversary Henry’s autism diagnosis. We celebrate now, but back then it was a different story. Six years ago, I was nervous and confused. I can admit it now, but I knew nothing about autism before his diagnosis. It’s hard to believe because autism is now my life and my work. But yes, at that point, I knew nothing more about it besides a few characters in TV and movies. Henry had a lot of the textbook signs back then:…
Read MoreOur Secret World
Happy Sunday from this kid. We’ve had an interesting day. He asked me for a train guide from 2007. I told him I’d do my best but reminded him that he was most likely setting me up for failure. He asks me for the most obscure things. He had faith in me though. I know because he asked me well over 100 times. He also asked me to go shopping. And for amazon. And paper. And Target. When the Amazon van drove by I knew we were in trouble. I…
Read MoreThe Silent Moments And The Loudest Thoughts
In horror movies, the silence often lets us know something bad is about to happen. We tense our bodies, pull the covers up in preparation, and anticipate the worst. We do the same in special needs parenting, or in my case, being the mother of a nonverbal autistic son. Sometimes I feel like there is so much silence that it could consume me whole. It’s not just the moments when I look into my beautiful son’s eyes and try with every cell in my body to will him to say…
Read MoreThe Uphill Battle of Being a Caregiver
I cried on my way to work this morning. Not because I was sad. I cried because being Cooper’s mom turns me into someone I don’t like. I feel trapped. And alone. And so utterly overwhelmed. And like I need to make threats to make his life easier. I don’t ever feel like I’m doing enough. Or the right thing. The special education system is a constant uphill fight with a 200 lb pack on your back and no food or water. Nothing comes easy. Not one part of it.…
Read MoreI Am So Proud Of Cooper…
As someone affiliated with Autism I have noticed if I browse through Pinterest or Facebook or any of the dozen support groups I am part of there is often a common theme….having a special needs child changes your life. Or defines you as a parent. Or teaches you lessons and makes you a better person. I’ll be honest. I don’t feel that way yet. I haven’t ever actually. Every day is more like an episode of Ground Hogs day. He typically wakes up before 5 am. My anxiety about him…
Read MoreA Thankless Job
Yesterday we had another weekly visit from Cooper’s crisis social worker. It was great as usual. We laughed and told stories and talked about ways to help Cooper. More specifically ways to make life easier. I mentioned how the week before the electricity was out at the house and I lasted 15 minutes before I threw him the truck to watch a movie. That kid cannot survive without technology. In a 15 minute period he melted completely down over no WI-FI, useless remotes, VCR’s, DVD players, TV’s, kindles, etc. It…
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