Archive for July 2019
We’re All the Same
Before having my daughter, I had two miscarriages. They were years apart and left me fragile and vulnerable to fear. Fear that it would happen again and fear I’d lose her after she was born. Later. Someday. Fear that kept me up at night. Fear that still keeps me up at night. While people are finally starting to open up about their experiences with loss, they aren’t talking about this anxiety that comes with parenting. At five years old, I opened myself up to trusting more people to watch her…
Read MoreI Need you to Show me the Way Kid
Last night we went for a walk. You and me and the baby. Sawyer was off riding bike with the neighbor kids. He finds walks with us to be a little boring I guess. The rain had finally stopped for the day and I needed to get outside the walls of our house. You know me kid and you know that sometimes mom feels a little batty when we spend all of our time inside. I buckled your brother into his stroller and helped you into your shoes and hoodie.…
Read MoreI Don’t Understand Why
I’ve numbed myself now for quite some time. I went from my daughter getting a diagnosis to my son having autism too. When I realized he was on the spectrum it really hurt because I thought he would be the typical child that would help with his sister and that I would be able to relate to on a level I feared my daughter might not be able to. When he began his aggressive behaviors- this beautiful boy I love- that is when it became too much. The whole process:…
Read MoreLong Term Survival Mode and the People who Live it
Recently I found myself in that that spring cleaning mode—the place where I wanted to purge, and organize, and simplify all the things. But as I took a step back to take inventory of our lives I was quickly overwhelmed by what I found. There were so many things that had been left un-done for so long. As I thought about why, the reality of our life came flooding in around me. It all comes down to survival mode. When you come home from the hospital with a newborn in…
Read MoreNo One Tells You
A first child turning 18 is an exciting time in a parent’s life, right? A time when the child you grew within you reaches the age of legal adulthood. It seems like those 18 years went by in a blink of an eye. A child you raised, guided, and encouraged throughout their childhood actually turned out pretty darn awesome. Your role in their life is different now. The little birdie is getting ready to leave the nest. They are preparing to go out on their own and conquer the world.…
Read MoreAutistic Teen left with nowhere to live after his Grandmother Dies
If you ask any special needs parent about their greatest fear surrounding their disabled child, I promise you it will always be the same. Who will care for my child after I am gone? That thought has haunted me many times. And it’s a complicated question as well. My son will need lifelong care. He will be a man, not a small child. I don’t know where he will be cognitively. Or if he’ll be able to bathe himself. Or buckle his own seatbelt. I don’t know if he will…
Read MoreAn Open Door
What is the measure of success in development? For most it’s acing a test or moving onto the next grade level. In our world, the special needs world, it’s different. Some days it’s simply trying. Or being present. It’s touching a food to your lips or only self injuring 50 times instead of a hundred. It’s waving to people or making a sound to communicate. It’s sleeping past 3 AM or tolerating a haircut. And sometimes, it’s an open door. This door. Our home has felt like a prison for…
Read MoreUsing a Fork has Never been a Priority
This morning my son used a fork to eat his breakfast. I didn’t ask him to use a fork. Honestly, I don’t even know if I gave him a fork. He must have grabbed it off of the counter. See, he was eating waffles and sausage. And in our house, when you have a child that struggles with fine motor, waffles and sausage can be a finger food. I wasn’t motivating him to use a fork. I didn’t do hand over hand either. I didn’t remind him after every bite.…
Read MoreAin’t Nobody Got Time for Drama when You’re an Autism Mama
When I received a private message today from a sweet autism mama, my heart sank. She was leaving her support group because of drama between her and some moms in the group who had been her best friends. I knew this decision didn’t come lightly. I knew her eyes were bloodshot from nights wasted worrying about the right thing to do, wondering how this situation got so far out of control, and feeling betrayed by the very people who were her lifelines for so many years in early autism. Her…
Read MoreI’m the Mom without a Bestfriend
I’m the mom without a bestfriend. I’m the mom without a tribe. I’m the mom without a village. I’m the mom who doesn’t get invited to birthdays, baby showers, weddings, mom’s night out. I’m the mom that doesn’t have a person. I’m the mom who spends weeks at a time never seeing another human being besides her kids and husband. I’m the mom that doesn’t get included. I’m the mom that doesn’t have someone to make sure I’m still hanging on. I’m the mom on the outside looking in. I’m…
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