Archive for June 2020
I’ve Been a Primary Caregiver for 30 Years. Here is What I Want you to Know:
Hi, my name is Kelly and I am the mother to an amazing young man named Steven. He was diagnosed with autism at age 2 and later apraxia. He recently turned 30 and is a dynamic, smart, interesting, funny young man. We share our story on Instagram at Growing Up Steven. Being a primary caregiver for the last 30 years has rewarded me with a few things: A panic disorder, depression, anxiety, excessive worry, marriage struggles, and at times, not the mom my kids deserved. I want you to learn…
Read MorePetition: BAN Videos of Children’s Autism Meltdowns
Imagine you are having your worst day. You lose your job, furnace breaks, your dog runs away and your spouse asks for a divorce. You are clearly struggling. And then someone asks you a question that you clearly don’t care about and you lose it on them. You yell. You get angry. You really go at it. Not your finest moment, right? Now imagine someone films it and puts it on social media. How would that make you feel? Vulnerable. Exposed. Embarrassed. Humiliated. Hello, my name is Kate and I…
Read MoreNever Miss a Moment
Recently I took my son to a local indoor water park for a few hours. He loved it. I had a few very interesting social observations. One of the most obvious was how we, the parents of special needs kids, never miss a moment in our kids lives. We are ever present, hyper vigilant, (over bearing at times) and just stuck to them like their own shadow. I get to experience and watch 98% of every single thing my son does. It dawned on me when I was watching two…
Read MoreHow I Forgive
Did you see that story about that school in New Jersey who left a student with Down Syndrome out of the yearbook? Her name is Glenda. She is twenty-one years old, and the youngest of five kids. Her sister wrote a long, detailed post about it on Facebook. It was a good post. “Glenda is very active in the school and community, so from her perspective, it was really hard for her to understand why she wasn’t included.” My name is Carrie. I have a son with autism. His name…
Read MoreToday, Be A Tiny Bit Selfish
Have you had them yet? The days that are a little harder to get out of bed, maybe because there’s nowhere to be or maybe because you just don’t want to. Not yet. The hot showers interrupted by the yelling outside the door, quickly followed by the thought of “I just don’t want to parent today.” Or maybe it’s the little moments that hit hard. The Zoom birthday parties that are missing all the elements of an actual celebration. Or having to say no when your kid innocently asks to…
Read MoreHe Loves You Kiddo
He loves you kiddo. I know it’s hard to see since he doesn’t care too much to play with you. Closing in on 5 years old, and missing half your school year, you need a lot more socialization than you get from a brother with autism, work from home dad, and the homeschooling/teletherapy/snack juggling mom. You often ask why your brother doesn’t talk or play, won’t ride bikes, and tears down forts once you build them. I overhear you trying to play, and I can’t truly describe what it feels…
Read More10 Things That Helped Me During Meltdowns As An Autistic Child
One of the more common questions I get asked as a professional speaker and autism self-advocate is about my communication challenges. After this question though the majority of the questions are about my previous meltdowns due to sensory-overload. As a nonverbal child until I was 3, most people think my main obstacle was communication when actually it was sensory integration dysfunction. My main challenges included loud noises, inclement weather, bright lights and not being able to be bathed until 18 months old due to the textural feeling of water on…
Read MoreHope, Shifting
Hope: to cherish a desire with anticipation, to want something to happen or be true. –Merriam-Webster Dictionary In the beginning, I hoped he would outgrow it. I hoped he would sleep through night at least once, and manage cereal from a spoon, and for the love of all things holy and good, stop shrieking. I hoped he’d learn to read, and understand fractions, and figure out how to eat his food without rolling it around in his fingers. I especially hoped he’d stop the rolling thing when we had spaghetti and…
Read MoreWhen You Become a Parent
When you become a parent, you start to understand that the world around you is a completely different place than you previously thought. Your priorities, goals, and literal realities all change. You think about and plan for baby’s first steps and words, the ups and downs of potty training, learning sports, teenage woes, driving, your kids finding lifelong partners, and eventually grandchildren. It is the most beautiful part of life when you get to see the life you created, flourish. And regardless of how many children you have, you are…
Read MoreA Father Who Stays
I made a list once of all the great qualities and traits the perfect boyfriend would have. As a middle schooler the most important thing to me was personality. I loved to laugh so he needed to be funny. The list also included blonde hair, green or blue eyes, tall, good looking, nice, romantic, outgoing and other superficial things. As I matured, the shallowness of my list dwindled and I realized the qualities that truly mattered in a partner. Hair and eye color wasn’t a big deal anymore. He didn’t…
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