Today, I was judgmental. Today I was jealous. Today my heart ached. As we battled through a specialist check up, I had to watch the anxiety build in my daughter. Silent but strong. Fear and irritation consumed her, followed closely by terror, as we progressed from appointment to lab work. The transition led to tears. Then the flapping, stomping body. Then the yells… I’m sure we looked like quite the scene. One melting down kid in one arm, another bewildered kid on the other, mom sweating, flustered, and weighed down…
She looked like a typical little girl, bright curious eyes, adorable curls, a laugh that made you instantly smile. She loved water, spinning in circles and all things Barney. She loved dirt and rocks and playing with bubbles. She would swing on her belly for long periods of time. All these things didn’t seem that out of the ordinary for a two year old. Although when you looked closer; You could see she wasn’t talking or even saying words. Her food choices were extremely limited. Her understanding was inconsistent and…
This morning I thought about forever, as we woke up before the sun, and hurried to get ready to go find trains. This is what we do. When you first find out you’re going to become a parent you think about raising a child, sending them off to college, and watching them get married and start a family of their own. I’m not saying he won’t ever do any of these things, but I’m also saying we aren’t promised he will either. The day you find out you’re not just…
Intrinsic value means something is valuable or interesting because of its basic nature or character and not because of its connection with other things. All people are inherently valuable without their connection to other things. Our uniqueness, individual qualities, and mark on this world rely on our individuality. No two people carry the same characteristics as any other person in this world. Because of this, we all carry a special kind of value and currency. Our autistic kids, Nixon, age six, and Nora, age three, shine a special magnifying glass…
Today I want to share with you a story, it’s the story of families like ours. It’s the story of those of us that are living a life with a family member who has complex needs. Today, I want to give you a peek behind the curtain so that, if you don’t live this life, you can maybe understand it a little better. Please know that every family like ours needs understanding, it can be a lonely road we walk. We often find comfort from the people that have similar…
When my daughter began her new school, I was hopeful. I knew there would be some learning and life skills but if I am being honest what I really wanted most for her was a friend. Of course, I wanted her to learn and to become more independent and all those things are happening, but a friend was something I wanted for her. My daughter does not have sleepovers or go to the mall with a friend. She does not talk on the phone (is that still a thing?) but…
Hot, sweaty, and out of breath in the middle of winter I sat in a full doctor’s office lobby. Due to construction, the area we were in held patients waiting for the pediatricians as well as those waiting for gynecologists. It was packed. My newly two year-old son would not hold still while we waited. I chased him around the room and brought him back to his chair over and over. The waiting area wasn’t enclosed and there were stairs nearby. Not ideal. Names were being called one by one…
When I share my son’s autism, my favorite parts to share are the little big things. The moments that happen that are so huge, yet so subtle, that sometimes I don’t realize they happened until hours later. Like this morning. At 3 am. When I was awake with a toddler who refuses to develop a love for sleep like her mama. My son Cooper is 11 years old. A tween. A soon to be sixth grader. He loves bullet trains, his grandparents, and episodes of Family Feud. He wants to…
A few days ago we took a boat ride. Sawyer brought two friends. A brother and sister who are very much a part of our family. The big kids, Cooper included, all wanted to sit in front and screamed at Jamie to go faster. They were also supposed to watch for logs but that part didn’t happen. As we boated along we hit some rough water. It only lasted a minute or so. Pretty common on a Friday on the St. Croix River. Anyhow, Cooper squealed as a bit of…
People get really nervous around individuals who are non speaking. Or folks who use a wheelchair. Or who look different. I didn’t know that before I had my son Cooper. Before he led me wide eyed into the world of disability. Without knowing he showed me how a person can be invisible. A person standing front and center. Some of it’s subtle. The overlooking of a person. Some is not. And it’s hard to see. As his mom it’s hard to not get mad and sad and frustrated. Because I…
