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Small Wins, Big Impact: How My Autistic Child Conquered a Grocery Trip
Prior to having a child on the autism spectrum, I never noticed how loud the outside world was. The sound of a cart in the grocery store, the cash register dinging, or the music playing as you walk down the aisles. It all blended into the background. The truth is, I never even noticed the music before my daughter. I never noticed how bright the lights were. I never noticed how loud the automatic doors were. For many years, we couldn’t go to unfamiliar places or through unfamiliar doors. She…
Read MoreThe Dignity in Every Job: Rethinking What Success Means for Our Kids
I’ve been sharing about autism for nearly ten years now. And over the years, I’ve read and heard and seen some things that have broken me. It’s par for the course I guess when you share publicly. These days though, I am more seasoned. I’ve learned to sit with comments for a bit before I respond. I try to listen and learn. I try to educate. I’m not perfect. But I try to do good in this world. The other day I read a comment that made me feel icky…
Read MoreDriving Through Life with My Nonverbal Son: Love, Growth, and Big Plans
My sweet boy, We just got back from a car ride. We do that sometimes. You and me. We used to ride around to help you calm down. A much needed break for both of us to reset. Now we drive around and hunt for trains. Not a lot has changed over the years except now you are fourteen. And you can buckle your own seatbelt. A skill we worked on for years. A skill that you are incredibly proud of. You even check to make sure mine is buckled…
Read MoreThere Is Always Next Year: A Journey of Hope and Progress
There is always next year…At age two we went to a restaurant for the last time. We started early intervention and learned how different our son was from his peers.At age three he was diagnosed with severe nonverbal autism, and we were told all the things he would never do.At age four we locked our house down. Three locks on every single door. Window alarms. Fences. We realized we couldn’t go places outside of our home. We started having aggressions and self injuring behavior. At age five it got really…
Read MoreA Family Full of Love: Why We Had More Kids, Not Replacements
Someone once told me that my husband and I had a third and fourth children as replacements for our oldest son. See the little one on the left there with the mischievous smile? And the little princess in the yellow dress? Those two. I assume they wrote that comment to hurt me. Or to remind me what a crappy mom I am. Or maybe they were just angry and miserable. Who knows I guess. What a ridiculous statement though. A replacement child. I’m not sure why we would ever replace…
Read MoreHow to Advocate for Your Child: A Parent’s Letter to the IEP Team
It is time to prepare for my daughter Olivia’s annual IEP meeting. I need to go over all of her goal updates and the data taken so we can move forward in the best way for her individual needs. Here is a letter I wrote that conveys all the things about Olivia to her team. To the education staff working with my child, Olivia is a very complex person. She was diagnosed with autism and sensory processing disorder. She also has anxiety and will become obsessive-compulsive in certain situations. I…
Read MoreWhy Time and Love Matter: Sibling Connection and Autism
Last night after putting my four kids to bed, I found myself staring at this picture from across my living room. Cooper was 8. Sawyer was 6. And my third was just a few days old. The perfect photo of three brothers. Except, it wasn’t perfect. Not in anyway. Cooper refused to touch the baby. He was very scared of him. The baby had been home 7 days at that point and Cooper had yet to really even acknowledge him. He refused to lie down when the photographer asked. He…
Read MoreA Friendship Beyond Words: The Love Story That Truly Matters
What is love? Or even a love story? I guess we all know the traditional one. The stereotypical one.But I know a better one.A friendship.My son Cooper is 14 years old. He is what they call…nonspeaking. See, at three years old they told me he had autism. And then around age six the professionals told me he would most likely never speak. And somewhere along that way, a daycare provider told me he would never make a friend. I’ll never forget it. It’s one of those moments who made me…
Read MoreDancing in the Rain: The Truth About ‘This Too Shall Pass’ for Special Needs Parents
There is a saying that is said at one time or another to every parent. This too shall pass. I remember being told those words as I held each of my newborns, exhausted from cluster feeding and lack of sleep. Again during the never ending messes that kids make. During potty training woes and tantrums over blue cups and the wrong shoes. And I guess in most cases it’s true right? The hard moments do pass. Usually. Babies start sleeping. Messes stop. Little humans learn to communicate. Kids get more…
Read MoreA Year of Purpose: Finding Joy and Strength as a Lifelong Caregiver
I recently marked one year since I took early retirement from my career to stay home with my son, Zachary who lives with severe autism. I have always worked full-time throughout his life, but once we realized he would always require 24/7 care, our goal was for me to care for Zachary full-time after he graduated high school. As a senior, he started saying, “Stay home, Mama,” every morning, so we knew he had the same goal. It took us about three years after he graduated to meet that goal.…
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