I have never been a huge fan of the word aware, even well before my son was diagnosed with autism. The term itself is a copout, really, claiming the basest level of understanding. I am aware I have a shopping addiction. Terrific. Now what? The educator in me would prefer awareness to sit lower than comprehension, even lower than knowledge within that famous hierarchy of learning. I feel the act of claiming awareness in order to make oneself feel sufficiently enlightened, wise, or in-the-know is, well, lame. One of the finest qualities an individual can possess, in…
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This story is almost three years old. I just learned of it today. I saw the photo above on Facebook. And I instantly felt ill. Sick to my stomach. Because I knew. This is the reality for so many parents in my world. This is my greatest fear. And I know say that a lot. I worry about who will care for Cooper after I am gone. Who will keep him safe. But in the now, in the day-to-day, I worry about protecting him from the world. He is nonverbal.…
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As with anything, there are parts that are beautiful. Parts that are hard, funny and sad. There are challenges. And huge, ginormous victories. There are tears. Both of joy and of pain. There are smiles. And lots of confusion. And even feelings of failure on my part. There is more worry than I ever thought possible. And did I mention love. So much love. Autism isn’t just a word to us. Or a diagnosis. It’s not just a box checked on a form. Or something we advocate for in April.…
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As any new mom would, when I was first pregnant I spent my time obsessing. I don’t know why I hated every baby name or why I thought my baby would be nameless. I spent my time reading through baby journals and articles. And in that time I read that babies develop hearing while in utero and that was it. So, we bought a book. Daddy would read aloud near my growing belly. This was going to be his book. I remember we searched for the most perfect book. I…
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A few days ago I stumbled upon a pretty great story in Facebook land. And I’ll be the first to admit that it’s nice to see a feel good story these days. It involved an autistic boy. And a lost teddy bear. Earlier this week, 12-year-old Ryan Paul was frantically searching through his home in New Jersey in hopes of finding his teddy bear. When he couldn’t find the toy, he remembered how his parents had told him that he should dial 911 in case of emergencies. Ryan then called…
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I’m going to share something with you that I wasn’t sure I’d ever be strong enough to share with people outside of our world. But first let me ask you this question… If you had a secret that ultimately was the turning point on why your nonverbal, aggressive, severely autistic son could continue to live with your family, would you share? This is something that I’ve gone back and forth with in my mind whether to share and to be quite honest I don’t know completely why. So what if…
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To My Dear Husband, I vividly remember our first date. I was 16 years old and you picked me up in a parking lot across the street from my friend’s house so my parents wouldn’t know. Let’s be honest, it was a disaster. We went to the movie theater and I paid for our tickets, you awkwardly put your arm around my shoulder for 5 minutes near the end of the movie and we did not speak to each other for years. You went on to have a beautiful daughter,…
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On Saturday morning, at 5:45 am, I casually mentioned to Cooper that I was going to Target at some point. I was chatting away to him when I worked it into the conversation. The words ‘Target’ and ‘birthday party.’ I talk to him all the time like this when we are alone. In the car. Or awake before anyone else gets up. I go on and on. Mostly nonsense really. I talk about the news. And how much I love coffee. I talk about Sawyer’s schedule. And our plans for the…
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In the wake of Autism Awareness month, I wanted to highlight some of my favorite qualities about my son Zachary, who has severe non-verbal autism. Sometimes it is easier to get wrapped up in the hard parts of autism, because, yes autism is hard. However, there is happiness and joy like no other as well. We live in New Jersey, which has the highest rate of autism in the nation. The CDC reports it as 1 in 32 in New Jersey. Chances are you know someone with autism if you…
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I shared a photo the other day of my sweet son with his photos. His treasures. In the picture Cooper was using a photo of his brothers to stim on his Kindle. Pretty cut and dry. The caption read “Cooper and his babies.” Gathered around him were more of his treasures. Mail. More photos. A bookmark. Books. A train magazine. You can’t tell from the photo but Cooper was in his glory. I was making dinner. The baby was in his high chair. Sawyer was playing hockey in the front…
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