There are fourteen steps leading to the second story bedroom. Fourteen. That doesn’t seem like a huge number, but in our world, it is. My daughter Samantha is a brilliant, happy, loving, and beautiful 13 year old girl who was born with CHARGE Syndrome, and later diagnosed with Autism. She doesn’t speak much, and not many people can understand the words that she uses, but I can. She is not a typical teenage girl, she doesn’t understand make-up, Snap Chat, or why it’s important to have so many friends. She…
What a Wonderful World, by Louis Armstrong. A beautiful song. I danced to it with my father at my wedding. Recently, I watched a friend dance with his mother to that exact song at his wedding. Her face beamed with pride. He had the biggest grin the entire time they danced together. I bet in that moment she was remembering that same boyish grin she watched transform from a toothless smile as a baby, to a snaggle toothed little boy, to braces as a teen and now this handsome son…
A single act of kindness may seem isolated in the moment, but kindness often paves the way for beautiful things to happen for years to come. Sometimes this beauty may not be revealed until over a decade later. At least this was the case with my daughter, Lizzie, a boy named Sam, and kindness shown to me by his mom, Angie. I was introduced to Angie in a state of desperation. I had just been told some unsettling news by a speech pathologist family friend. “Your daughter is showing all the…
Yesterday was Autism Awareness Day. Autism awareness month is hitting our family hard this year, and frankly, my heart is broken. Many of you may know that my son Christopher is enrolled in a residential school for Autism, a school for kiddos with heightened behavioral challenges. We visit there every Wednesday, and bring him home on the weekends…every weekend, without fail. Until now. His school informed us that they are in lockdown. He has been there, hunkering down, with his peers, teachers, and therapists. We were told if we brought…
I am autism. I am funny loud big. Yet I am quiet. I am a slippery riddle—a puzzle piece upon the bumper of a car, a black sentence upon white paper, a curious phenomenon. I am the month of April, and the color blue. I am a number. A statistic. A stereotype. I am a social story before July fireworks. A schedule fixed to the refrigerator. I am speech, and ABA, and occupational therapy. I am autism. I am a boy. I can be silly. I can be serious. I…
I’ve heard it so many times. “Just wait until they start talking, you’ll just want them to be quiet”. I see memes like this and while I know it’s said in good humor, it’s also a little heartbreaking. Not everyone hears “mom”. Some children are deaf, non-communicative, non-verbal…parents lose children every day, and would give their whole life just to hear “mom” one more time. My daughter doesn’t have a name for me. The last time she said “mama” she was 10 months old. In fact, neither of my kids…
This is the most fearful time of my life. A deadly virus spreading quickly throughout the country will strike fear in most people. However there is another fear I feel deep down in my soul. A fear most of us special needs parents are feeling during this uncertain time. The fear of regression! The fear of our amazing kids losing skills they worked so hard to master. Social skills, academic skills, social/emotional skills, they all matter. This fear haunts me and keeps me up at night. I am doing all…
This morning I listened to a radio show, where a doctor explained that in times of isolation and fear, we need to feel loved in order to feel safe. He went on to say that something called oxytocin is our happiness hormone, and when it is released throughout our body, we feel a surge of positive emotion, or love. He said the most effective way to release oxytocin is to bond socially. In times of social distancing, it’s important that we each make eye contact, and experience touch. Hi. My…
I am NOT a “visual person.” My husband sees everything, even the hidden structure of a complex machine simply based on form, function, and the noise it makes. My husband is NOT a “listener.” I hear everything, even the raw truth betrayed by single word choice. Yin and yang. Peas and carrots. Amy and Sheldon. I may get the gold star for daily grinding, but he has saved my life more times than I can count, literally and figuratively. If I am the trusty ole’ engine, he is the emergency…
I cannot believe it has been 6 years since I held you for the first time. I remember laying you on my chest and looking into your big blue eyes. In that moment, I knew I would never love anyone the way I do you. Since then, you have made my world go ’round. Celia, you complete me in ways I didn’t know I needed. Not only do you complete me, but you show me what true love is and how to love more. Having you as my little girl…
