Questions filled my mind and I was unable to hear what the doctor was saying. I was sitting in her office listening to all she had to say about my three boys. The journey started what seemed like ages ago. I had been fighting to get to this very moment, but I wasn’t expecting this. It all started in 2017 with our youngest son Sawyer. We finally got a Pediatrician to listen to us and hear our concerns. We had no idea where the first referral would lead us. The…
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To the mom with bags under her eyes from getting up hours before school to take her son to his appointments To the mom sitting by her baby girl in the hospital bed yet again while she fights for her life To the single mom on food stamps who hasn’t worked in years because the calls from school are too frequent To the mom who is still caring for her son well into her old age who prays someone will take over when she’s gone To the mom who had…
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For my entire life, I’ve watched the world through a porthole. Disconnected, alone. Before my son Charlie was even two, he was diagnosed with autism. At that moment, I entered a world I thought I knew nothing about. I didn’t know that it had actually been my life too—for as long as I even had memories. The story began to reveal itself to me during a talk with my mom. She said that Charlie couldn’t be autistic because he and I were the exact same way at that age. Except…
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Yesterday, I had the rare opportunity to watch my son interact with the world outside of our home and therapy. But even more interestingly, I was able to watch the world react to him. Typically, people, strangers, onlookers, observe him with curiosity. Often with kindness. And caution. Sometimes with a little judgement. And even a little fear. That last one kills me. One of the hardest things to process, understand and feel as a mom is seeing people be afraid of my child. The little boy who cries when someone…
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You want to know what’s amazing about life? And my kid? And hard work? And goals? And hope? This. This right here. A simple trip to the grocery store. Something that most families take for granted. Something that we are always working on. Calm body. Walking. Being safe. Waiting. Communicating. But more importantly, being out in the community. A year ago I would have never dreamed that I would have met him and his therapist at the grocery store. That goal wasn’t even an option. Or that he would wait…
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“At least he doesn’t…” When you “at least” me as a complex parent. I feel minimized. I feel shut up. I feel shut down. I feel unheard. I feel compared. I feel invalidated. I don’t let very many people into our lives, at least not in person. Mostly because I’m spent. I’ve been spent for a darn long time. And one of the reasons I’m spent is because of things like “at least”. I know people mean well, I give them the benefit of the doubt. And I also realize…
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My son Jack was diagnosed with autism when he was eighteen months old. It was a cold, gray afternoon in November. He was wearing a blue jacket. He’s fifteen now. A lot has happened since that day in November. I had three more kids and Jack learned to talk and then he learned how to pick the locks and run out the front door. I chased him like my life depended on it, because it did. Finally, we taught him how to hold our hand in the parking lot and…
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I have a message to send loud and clear. A true, honest advocate fights for the child, adolescent or adult whom they are representing. They will position themselves to partner with all parties involved – the parents and/or other caregivers, school personnel, aides, the therapists, the case managers – and will not set out to make enemies of any of the aforementioned parties or convince caregivers that this is an ideal strategy. Sending a message that insinuates that the majority of teachers and therapists are out to make someone’s life…
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They say a picture is worth a thousand words, but what exactly are those words? What’s the worth of something that’s carefully curated, filtered, and posed? I’ll tell you. I’m a recovering pretend-post addict, after all. Our most recent family photos were met with many words of praise: “Your children are beautiful!” “You look so gorgeous!” And the most gutting: “You have the perfect family.” No one could’ve known I was reading those comments with a pit in my throat, probably from the comfort of my bed, the one I…
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Today is Sawyer’s seventh birthday. Which is a really big deal. But honestly, what he said to me this afternoon makes it even more special. We had arrived at Cooper’s school to pick him up for the day. It was Jamie, Sawyer, the baby and I. Cooper came running out. All excited. His therapist said we have something to say to Sawyer. Cooper was jumping up and down and clumsily pushed a button on his speech device. ‘Happy Birthday!’ the automated voice said. Then he giggled and clapped. ‘Thanks buddy’…
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