I used to think the end game was speech. That was the goal and the dream for my nonverbal son. Words. Never ending questions. Conversations about trains and trucks. Of course I thought that. First time mom. A mom who knew nothing of the secret world of nonverbal. A mom who thought everybody talks. Eventually. ‘You need to prepare yourself for a life where Cooper never speaks.’ I’ll never forget that sentence. I was so mad. Angry. Livid. Crushed. I couldn’t imagine a world where my beautiful son didn’t speak.…
Until you have sat with your child whilst they have lost all control, and all you can do is hold them through it, feeling completely useless. Until you have had to hold your child’s hands to stop them from hurting themselves, your heart breaking, wishing you could take that pain away. Until you have watched your child go from five safe foods to two and prayed every night that it doesn’t go down to zero. Until you have stayed up all night watching your child fight to be able to…
A letter to my little brother… Hey brother, I’m hoping that someday I can say this all to you. But there is a chance that I might never be able to…I’m hoping that when you are older you will read this and understand. I know my autism confuses you sometimes. I’m so loud. I flap my arms. I don’t notice toys. Or play sports. Or like to leave our house. I don’t play like you. I have never ridden a bike like you, and I don’t care at all about…
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…
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…
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…
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…
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…
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…
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…
