When it’s hard to treasure every moment, because of autism.

When It's Hard to Treasure Our Days Together

As parents, we love our children with all of our being. They are so much a part of us that we feel joy when they smile and pain when they cry. We are bombarded with messages to treasure every moment. Life is fleeting. Our children are only young for a short amount of time. That’s true; but sometimes it is hard to treasure our days together. There is another truth that I have come to know. Sometimes, autism can be an asshole.

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For the parent who is trying their best.

Sometimes you try your hardest, but your partner walks in the door at night to find you unshowered, wearing pajamas amidst a tornado of toys, wine glass in hand and tears streaming down your face. Your partner looks across the room and sees the children, faces illuminated by the electronic devices you gave them in order to allow yourself a moment of peace.

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On the Threshold of Change

Do you ever feel like things are about to change in a big way? Like something big is about to happen and life will never be quite the same again? I felt this way before my wedding day. There was a similar feeling when I went to the hospital in labor with C, and when those two lines appeared and we discovered we would have Baby Jo. Our family is on the threshold of change and it is making me anxious.

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C’s Visit to the Autism Clinic

C playing piano
Last summer, we put C’s name on a waiting list for the Waisman Center for Autism and Developmental Disabilities. This clinic is part of UW Health and we were told it was the best place to go in Wisconsin for a complete, holistic evaluation for an autism diagnosis. C finally had his appointment late last week. I was so anxious about it that I barely slept, and afterward I was so exhausted that with the exception of a hasty Facebook post I hid from the world.

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“It is what it is.”

It is what it is.

Those five words came out of my mouth before I realized how silly they sounded, while also summing up exactly what I was feeling.

“It is what it is.”

I was at the church office to pick up C’s school supplies. Two days earlier, his teacher approached me when I was dropping him off for school. He was making seven or eight trips to the bathroom during his three-hour school day. He is too scared to go to the bathroom alone, so a teacher had to leave the classroom to escort him to the bathroom and wait outside the door until he was done. Sometimes he was in there for 10 minutes at a time.

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Every Color has a Meaning

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Every Color has a Meaning

The thing is, there’s something about my son that I know, but we don’t actually know, but we want to know, yet I’m scared that we will be told, “no,” about. It’s a word that makes me tear up even as I am about to type it here. It’s this thing that I’m grappling with knowing but not actually knowing, and I’ll be sharing my deep emotional struggles with that all week.

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