To my son’s future caregiver… My son is 14 years old. When he was three he was diagnosed with severe nonverbal autism. We had no idea what the future held. And honestly, we weren’t told much good. When he was 8, I made the decision to walk away from the negativity. The sad predictions. And the people who didn’t believe in him. Or see his strengths. It was the best decision I’ve ever made. His favorite thing to do is to decorate for Christmas. He will help for a bit.…
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What keeps you up at night? That was the question asked during a presentation I was giving to the amazing folks who work with children and adults like my son. I fumbled a bit through my answer because I don’t like to speak of those things. I said keeping my son safe from the dangers of the world. As he gets older, bigger and bolder, I find it more worrisome. And who will care for him after I’m gone. Or if something happened to me and my husband now. I…
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Every year at Christmastime, my older two children either went to see Santa, or we talked all about Santa and wrote lists. I could see the excitement building inside them and the anticipation on their faces on Christmas Eve as they got ready for bed. They would wake up on Christmas morning and run into the living room, yelling out, “Santa came!” and dive into their gifts. Olivia, on the other hand, was nonspeaking, and although I still tried to tell her about Santa and presents, she seemed to have…
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Our elf on the shelf experience encapsulates a lot about my son Jesse’s journey with autism. When her was around four, my sister bought Jesse a boy Elf on the Shelf. She’d gotten one for my nephew and wanted to spread the magic to our family too. I wasn’t a big fan. I’ve always been of the snitches get stitches mindset when it comes to these little overpriced spies. But it was a thoughtful gesture, so I went along with it. It’s funny how the typical things you never even…
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My message to establishments that have family restrooms. THANK YOU. Before I had a child with a disability, I was oblivious to a lot of things. I foolishly assumed that all kids went to restaurants, and used public restrooms and even transitioned from riding in a cart to walking. I didn’t know that some children are deathly afraid of automatic flushing toilets and hand dryers. I didn’t know that some parents are unable to go into gas stations or even go through drive thrus. But the biggest thing that I…
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This adorable newborn picture is proof of my planning-ahead prowess (and also my love of anything involving a theme, costume, and/or celebration). Since my first child was due in October, I was obviously going to make sure we got an amazing Christmas card picture during our newborn photo session. So, I consulted Pinterest, conferred with our photographer, et voilà! I always have lots of plans bubbling cheerfully away on the back burner of my mind. It’s just how I’m wired. And boy, do I love it when a plan comes…
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I’ve learned as I’ve aged that the biggest, most memorable moments of our lives, are often the ones we least expect. Of course a wedding, the birth of our babies, an anniversary, are the best. But other ones sneak in. When you least expect them. A solo car ride with your son. A walk with your aging parent. Staying up way too late drinking wine with your husband. Coffee with a friend. Or when your first born takes it upon himself to decorate for Christmas. Now, I know that may…
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I have often called myself a member of the “sandwich generation.” But after a little research, I discovered that I am actually a member of the “club sandwich generation.” The term refers to the midlife generation being wedged between the needs of different family members: parents, children, and grandchildren. My mother is living, and I am a wife, a mother, and a grandmother. I’ll go a step further and add extra meat and extra mayo, lots of extra mayo! I am a forever caregiver for my 39-year-old son with autism.…
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Yesterday, I drove my middle son Sawyer to school. He typically rides the bus but he wanted to donate a handful of toys to the toy drive his school was holding so I drove him. ‘The toys go to Children’s Hospital mom.’ He was adamant about bringing presents. As we drove he asked me a zillion questions. As a mom, I’ve learned that some of the best conversations happen in the car. After tell me that he has a project due this week and about something he saw on YouTube,…
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When I share our autism story with professionals…teachers, therapists, doctors, nurses, I always say this sentence: Something you have said to a parent about their child, positive or negative, runs through their head on repeat. It’s true. Many have hardened me. Some have lightened the load. We have been told so many things. Your son will never talk, make a friend, or ride a bike. If your son doesn’t have any words by age four than game over. Your son is absolutely amazing! And then this one. One of my…
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