Archive for January 2020
Life Has a Way of Changing
You want to know what’s amazing about life? And my kid? And hard work? And goals? And hope? This. This right here. A simple trip to the grocery store. Something that most families take for granted. Something that we are always working on. Calm body. Walking. Being safe. Waiting. Communicating. But more importantly, being out in the community. A year ago I would have never dreamed that I would have met him and his therapist at the grocery store. That goal wasn’t even an option. Or that he would wait…
Read MoreAt Least He Doesn’t…
“At least he doesn’t…” When you “at least” me as a complex parent. I feel minimized. I feel shut up. I feel shut down. I feel unheard. I feel compared. I feel invalidated. I don’t let very many people into our lives, at least not in person. Mostly because I’m spent. I’ve been spent for a darn long time. And one of the reasons I’m spent is because of things like “at least”. I know people mean well, I give them the benefit of the doubt. And I also realize…
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 MoreThe Little Brother with the Old Soul
Today is Sawyer’s seventh birthday. Which is a really big deal. But honestly, what he said to me this afternoon makes it even more special. We had arrived at Cooper’s school to pick him up for the day. It was Jamie, Sawyer, the baby and I. Cooper came running out. All excited. His therapist said we have something to say to Sawyer. Cooper was jumping up and down and clumsily pushed a button on his speech device. ‘Happy Birthday!’ the automated voice said. Then he giggled and clapped. ‘Thanks buddy’…
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 MoreMy Journey Living with Autism
Hey everybody! My name is Liz. I’m 26 years old and I have autism. Imagine being trapped in a maze, mouth duct taped and unable to talk. Each step in your life feels like you are living in a video game and you have to pass levels to eventually find your voice. This has been my experience since I was diagnosed with autism at age two. Many of my developmental skills were delayed. I didn’t speak until I was six and I wasn’t potty trained until age eight. At birth…
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…
Read MoreWhat’s Your Name?
We walked into our favorite Thai restaurant to pick up our carry-out order when my 7-year-old son James began greeting all of the customers. “Hi,” he said with a huge smile to each person we passed. For the last several months, James, who was diagnosed with autism at two, has developed a love for meeting new people and learning their names. For a while he would just point at people and say, “Who’s that?” So, with our team of ABA therapists, we have been teaching him to introduce himself. I…
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