The Fears We Share as Parents of Kids with Disabilities

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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The Elf on the Shelf and the Complex Joys of Autism

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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Thank You: Why Family Restrooms Matter to Families Like Mine

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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Planning for Serendipity

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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Unexpected Moments: The Magic of My Son’s Christmas Spirit

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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The Club Sandwich Generation and Forever Caregiving

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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The Beauty of Sawyer’s Soul

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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Why Positive Moments Matter in Our Autism Journey

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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Facing Forever: The Hardest Talks About Our Son’s Future

Parents of kids with disabilities… What is the most difficult, yet important conversation you’ve had around your child’s needs? Maybe it was around medications. Or the decision to have more children. Or to let go of education and focus on daily living skills. For my husband and I, it was around forever. It was grappling with the thought that our son will live on this earth without us. It took us years to be able to sit down and rationally speak about it. In the beginning, I’d bring it up.…

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Feet Bigger Than Mine: A Mother’s Journey with Autism

I don’t talk about our challenges associated with autism all that much any more. Some followers assume that life is easier now. Or our son is less autistic. Neither of those things are true. Cooper is still very much significantly affected. But he is also wonderfully supported. We, his family, our friends, his team, we know how to support him. And because of that…he is thriving. We all settled in as I like to say. I’m not afraid to share either. It’s not that. I have my reasons. Ones that…

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