Is filled with ABA therapists, OT & groups, speech, special early school year classes, not to mention our more “normal” stuff like swim lessons and Kung fu, play dates…with the same old people who can be patient and tolerant enough with my kiddos so I can relax…mostly.
We have a pool. And yesterday we had multiple ABA therapists due to come, a group meeting for building social skills to attend…these take up HOURS of our day. Generally I am grateful for the break, the help, the education I gain. However…yesterday I found myself in a deep low. Depressed. When do MY kids get to have summer vacation? When do they get to make their memories that they will look back on fondly??
So you know what?? I cancelled the ABA’s for BOTH of them. We jumped in the pool and dove for coins and treasure. We played tea party under water and laughed and played for hours in our pool! We had whatever we wanted for dinner, within reason of course…we stayed up late watching movies. We had a summer’s night. It was wonderful and SO needed!!! I wish I could give them more of this. I wish I didn’t need the welcomed break and reassurance of a therapist appointment to help them (and me) navigate this world of autism. But at least we had one awesome day. A play day.
I almost forgot for a moment we were any different from anyone else. That our life is often, quite difficult, turbulent and uncertain. For a day and an evening…I mostly forgot and just lived in the sunny moment of my two brilliant, loving, fun boys.
Author: Vic.E.
I am a Mom. I am a Caregiver. I am an Advocate. I get paid in unconditional love, in progress and by the amazing support of my very hard-working husband who is the greatest Dad to our two boys.
Our first child came in 2011. He was orange haired and big, 9.5lbs…yikes! He was a butter ball. Just perfect and delicious! His eyes came out green like Momma’s and his skin tone white with freckles like Dad’s. He will be taller than both of us, over 6’ according to the trajectory of his health chart! He has his great grandfathers build. He is smart, has an amazing memory, is super creative, and is sensitive, so empathetic. He is my first born and just perfect. He is also diagnosed with Autism-mild, ADHD, Anxiety, dyslexia, possible dysgraphia and possible other things…really, just all things to help him get the supports he needs to thrive in life. At his core, he is who he is. Full of silly laughter, big smiles, a warm heart, intense loyalty, a strong justice gene, and a fundamental belief in the good.
My second and last child, was born in 2013. The boys are a year and a half apart. He was born looking like an old man. Poor kid was induced early, for fear of another large infant and my ignorance I had a say. He had the umbilical chord wrapped around him and was blue as can be. He recovered fine though, no need for oxygen or anything. But he was checked on a lot to be sure. His skin would be tan like mine, but he won’t go outside much in the daylight. His eyes are closer to Dad’s and his Gran’s (my husband’s mom)…hazel green/dark blue. He has moles rather than freckles, but other than the should be darker skin and moles, he looks just like his Dad. A little mini-me of my husband. Same sandy dark blond hair, same darker eyes, same features. His body is more like my husbands as well. However, he is due to grow over 6’ and will most likely be taller than his big brother! He had a level 4 tongue tie. Something I thought would stretch and break on it’s own. I was a naturalist momma. Keep those sharp objects away from my babies!!! He was able to nurse just fine, and we got to take him home. He was diagnosed first, his symptoms were classic…development fine and then massive regression. He was around a year old when we noticed. The doctor at my other son’s check up saw it, and referred us to an “evaluation” which I did not understand at the time. Anyhow. He is Severe-Autism, ADHD, non-verbal. Although, 10 years on, I don’t like that term for him. He chats all the time, mostly scripts, mostly needs and wants. Rarely anything novel comes out, but when it does it is brief, but magical!!! He progresses every day.
My life went from social to isolation pretty quick. Other’s noticed the differences with our kids, my youngest was unsafe to take out for years. So, here are our stories. Jumbled up, in reflection, looking forward, retrospective. I try to write about our progress, our hopes and show the raw side of living a life in a house of neurodivergence. You are not alone, we are many. It’s time we showed ourselves to the world and stopped hiding our kiddos away. They deserve to be celebrated, included, loved.
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