Not long after I recorded the “Going Out” OHS Podcast episode, we decided to go to the beach as a family. Despite just talking about the very topic—how difficult it is to do family activities with Asa—I was still, somehow, unprepared. We went to a lovely, clean little beach that is a mere 45-minute drive from our home. I’m beginning this piece on my phone as I sit in my parked minivan with Asa, and this is my view. You’d
Dangerously Mobile – One who can move their body, but has limited awareness of the implications and boundaries of their movements. Think about it like this. Imagine you are on a boat. The boat is moving. It’s moving fast. You are trying to gain your balance and walk from one end to the other, but the waves are unpredictable, and it feels as though the ground is always in motion – because it is. Slowly you are making your way,
My daughter is watching me parent a special needs child, even when I don’t think she is. She sees me with her brother. She sees me cooking and cleaning. She sees me all the times I say I can’t play right now. But mostly, she sees my disappointments even when I think I’m doing my best to hide them. The other morning was one of those moments. First, I got the call canceling the appointment for my son that I
Implications on Me As it was nearing my son’s first birthday, his teacher and trusted caregiver at his day school handed us the first of many to come, “Ages and Stages,” a form with questions about at what level the child is performing specific tasks. I had never seen this with my typical daughter. She kindly suggested I fill it out and take it with me to my son’s 1-year checkup that would be the next week. A few weeks
“Your child won’t die from being home,” began the response that triggered this post. It wasn’t a response to anything I said or did. Still, a tightness grew in my chest as I realized this person had no idea what many parents and caregivers are going through at this very moment. This “letter” is for all the people who are wondering why others are fighting for their children to receive in-person education to stop continued regression even though I still
I made it ten years as a mother before I had to clean poop off of a wall. This isn’t a bad record considering we’ve had no break from changing diapers for the past decade. After all, many children go through a poop-smearing baby/toddler phase, and this is one gross habit my kids never got into—though there are plenty of others! A single, isolated poop-cleaning episode during year eleven of my marriage would not in itself be a noteworthy event—especially
Just weeks after our diagnosis, wound still fresh and raw, I took my son with me to the store. I was standing in line waiting my turn, him in the cart looking at me while smiling sweetly and slouching over from the lack of core strength, when the employee behind the counter said, “he is so cute!” I politely smiled, said thank you, while inside my heart dropped. My head, it retaliated with, “will you think he’s cute when he
My son has a rare genetic disorder called Phelan-McDermid Syndrome and he doesn’t even know it. He is as happy as … well, honestly, he is the happiest kid I know. He falls at least 30 times a day, and he just picks himself back up none the wiser. He is 4 years old and can’t use words. He LOVES food, and he can’t chew, at least not well. This is not typical. My son will never grow to be
