Posts Tagged ‘autism’
Tell Your Story
Last week I read an article about a police officer and his fiancé who left their 8-year old son with autism to freeze to death overnight in a garage. I felt the familiar bubble of rage and sickness in my throat. Alone in my office, I shook my head. I flashed back to my son at eight years old, when he asked everyone the color of their shampoo. He ate cinnamon toast for breakfast every morning except Wednesday. Every Wednesday, he had waffles. At nine, my son went to summer…
Read MoreHard Work
Some kids work really hard before they start their school day. Harder than most. The get up early and leave the house in the dark when it’s 19 degrees and go to speech and do puzzles and practice saying words. They sit on the ground with their angel-like therapist and their mom and try. They turn the lights off and run out the door and giggle and get mad when the sounds won’t come out right. The ask for hugs from mom when it gets to hard and practice calm…
Read MoreMisunderstood in Public
Hi. My name is Carrie. I have five kids, and my second son has autism. His name is Jack. He is fifteen. Every so often I come across an article about how a person with a diagnosis or a disability was asked to leave a public place because they were too loud, or disruptive, or misunderstood. Broadway musicals. Movie theaters. Water parks. When you have a child diagnosed with autism, doing something as simple as going to the grocery store, or a Little League baseball game, can be a challenge.…
Read MoreDear Autism, Happy 3rd Birthday
Dear Autism, Happy third birthday. While it may have taken you 9-12 months to come around, when you finally reared your head, you made your point. You have brought us so much joy, and so much pain over these last three years. We cried when the doctor sat us in the chair in her office and said, “It’s autism.” Your dad and I held hands, separated by a small table housing a box of much needed tissues, and we stared not at each other, but directly at the doctor as…
Read MoreFinding Your Way Back to God After a Diagnosis
I just came from church. I went alone today. I could have brought my two younger children but honestly, I needed 60 minutes to myself to sit and think. I chuckle at what I consider to be a ‘relaxing break’ now. Anyhow I don’t often talk about church on this page. Because like politics and vaccinating and puzzle pieces and the color blue, it can anger people. And that isn’t what my mission is about. I refuse to argue about autism. Not anymore. I’m too busy making sure my son…
Read MoreHope, Grief, and Grace
My son Jack was diagnosed with autism when he was eighteen months old. It was a cold, gray afternoon in November. He was wearing a blue jacket. He’s fifteen now. A lot has happened since that day in November. I had three more kids and Jack learned to talk and then he learned how to pick the locks and run out the front door. I chased him like my life depended on it, because it did. Finally, we taught him how to hold our hand in the parking lot and…
Read MoreThe Right and Wrong Reasons to Advocate
I have a message to send loud and clear. A true, honest advocate fights for the child, adolescent or adult whom they are representing. They will position themselves to partner with all parties involved – the parents and/or other caregivers, school personnel, aides, the therapists, the case managers – and will not set out to make enemies of any of the aforementioned parties or convince caregivers that this is an ideal strategy. Sending a message that insinuates that the majority of teachers and therapists are out to make someone’s life…
Read MoreInvisible Disabilities: What You Can’t See in This Perfect Family Photo
They say a picture is worth a thousand words, but what exactly are those words? What’s the worth of something that’s carefully curated, filtered, and posed? I’ll tell you. I’m a recovering pretend-post addict, after all. Our most recent family photos were met with many words of praise: “Your children are beautiful!” “You look so gorgeous!” And the most gutting: “You have the perfect family.” No one could’ve known I was reading those comments with a pit in my throat, probably from the comfort of my bed, the one I…
Read MoreDear Mom, I Turned Out Okay
Dear Mom, I know raising my brother, who has a disability, takes a toll on you in more ways than one could imagine. Being your child without the disability, I know you struggled with if you were doing right by me. If your time devoted to my brother, affected me in a way that judged you as an inadequate mother. How do I know you struggled with these roller coaster of emotions? How do I know it was hard for you to manage being both my brother’s caretaker and a…
Read MoreRaising a Future Advocate
Dear fellow momma at my sons therapy center, Today, you may have heard my oldest ask, “who’s that yelling?” I thought we covered autism, but I was so focused on explaining her brother’s autism, I forgot to go into detail about the whole spectrum. I took this as a teaching moment, but you weren’t in the car with us. There’s no way you would know this. My daughter is the sweetest, most compassionate kid I know. She’s also naturally very curious. Her question stemmed from curiosity. But we talked about…
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