I’m twenty five and still don’t know what my own systems are trying to tell me. Why? Because I have autism, and that brings problems with one’s interoception. Which tells you if you are you are hot, you are cold, or when you have to go to the bathroom, or when you should be feeling pain. One night this week, my mom and I were up about every two hours; I was in immense pain. We agreed not to go in the middle of the night because of the deer…
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Today, after nearly ten years of sharing about autism, hoping to shatter stigmas and lessen fears around those who are different, it finally happened. I lost faith in the internet. And let me tell you, prior to today, I’ve seen some stuff. Stuff you probably wouldn’t believe. Awful, demoralizing stuff. But today, I saw the worst. And as a disclaimer, please know this is not a political post. Anyone who knows me knows I’d rather start my eyelashes on fire than post about politics. This is a post about humanity.…
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Life has a way of shifting our priorities, reshaping who we are in ways we never expected. Parenthood does that, and for me, autism amplified it. Ten fold. The woman I was years ago would barely recognize the person I’ve become today. But every now and then, something, or rather, someone, reminds me of the life I once led and the connections that have remained constant through it all. I had one of those reminders on Friday night when I did something I never do. I went out. It was…
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Sometimes, parenting kids in all of their typicalness confuses me. The curiosity. The independence. The ease. My first baby made me a mama 13 years ago. Then, together, we crashed into what I call the secret world of autism. I’ve never known a second of parenting without factoring in disability. The hyper vigilance. The worry. The fear. The hope. It’s just different. It’s climbing play structures and always getting into the pool and holding hands and heads during a meltdown in a busy street. It’s explaining and asking for accommodations…
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Perspective Matters Why is perspective important in life Perspective Matters. It’s a matter of perspective. I’ve been up for several hours researching, and figuring out ways to do what’s best for our child as we navigate our IEP situation. I know it will all work out exactly the way it’s supposed to. I stopped for a moment to think about perspective. Seeing each situation for what it is and honoring where they as human beings are in life. Yes, on several occasions my mind wanted to go into judgment by…
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My son, I had plans for us kid. Big plans. Plans that I can admit didn’t include autism. Even today, after 13 years, sometimes I still find myself wondering how my plans got so derailed. I’ll be giving you a shower, bending down and washing your feet, and I’ll look at you, eyes squeezed shut, eating bubbles, throwing your head back, smiling, squealing, and I’ll wonder how this happened. How we got here. Right here. Thirteen years in. Or, I’ll be helping you with your shoes and you’ll grab my…
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To the Mumma who has just received an autism diagnosis, I see you, I hear you, and I was you. You knew what it was long before the doctor even mentioned the words. You had noticed the signs, watched how your child met milestones and then just stopped, almost regressing overnight. You’re painfully aware of your best friend’s child who is talking in sentences while your child seems lost in his own world most of the time. “You shouldn’t compare; kids all develop in their own time” – you’ll hear…
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When you have a child diagnosed with autism, it’s not about you as the parent. At least that’s what we are told. Your sole focus becomes helping your child. Getting them the help they need. Services. Supports. Therapies. Education. And so on. That’s the role of a parent. And that’s how it should be. But one part that is overlooked, I think, is the evolution of the parent. Their journey. And the patience that should be given to them when everything changes suddenly. It’s not easy ya know. Stepping off…
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When my son was 7 and 8 and the reality of nonspeaking forever was sinking in, I used to spend a lot of time thinking about his future. What would it be like? A teenager and then a man who couldn’t speak. Would I ever know his favorite color? Or why he loved trains so much? Would I ever hear I Love You? Would people be kind to him? Would they be patient with him and treat him with the respect that he deserved? Would they know how cool he…
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I come across pictures all the time. Old ones. Taken back before life got really interesting with four kids. I usually find them all crumpled up under a couch or stashed in between the pages of an old book. Sometimes a corner is ripped off. A sign that my oldest, who is autistic and adores photos of his family, has treasured it and hidden it away for another day. When I found this one I stopped picking up legos and beyblades and internally cursing my kids for being so dang…
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