COVID-19 Reality with ASD

So my youngest, technically “non-verbal” but I prefer “semi-verbal” kiddo, realized yesterday that he could not go to his favorite places no matter how he tried to do the “right” thing. He even offered to go to school, he HATES school!! He tried to sneak outside, tried to pull the door off the hinges when just unlocking it did not work.

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It began around 10:00am, ish. It has not stopped. Even though his daddy took him out to a drive through car wash, he got very upset when he had to come home. I had to stay out front with him for a long while, trying to chase him back in. As predicted, when the time came and it started getting cold, I had to pick him up-all. 60 lbs, 4’2’’ of him, kicking and yelling, gripping the door frame. Finally, his father and I got him in and full meltdown ensued. My heart hurts for him. He dos not understand and there is not a way to make him. Why is the toy store closed?? People being sick does not make sense to him, he just keeps asking to wait for the doors to open and to go to wherever he wants to go…which is anywhere away from here. Home.

Then there is my other kiddo. My big boy. My 9 year old teenager. His voice is changing, unbelievable!!! Very noticeable now that I am with him all day and the cracking and groggy sound I thought was from waking stays with him all day most days. He is definitely deeper than his little boy sweet voice used to be. My oldest knows, he knows what it is that is causing the changes. His ASD/ADHD challenges are different, as I have written previously. As they grow older, it has become more obvious than ever. He gets it on a deep level, he misses his friends and is happy to FaceTime or google chat or zoom. The understanding is all there…but his anxiety because he knows so much, is also stronger these days. Some OCD behaviors have begun again. Anger has resurfaced as a sign of frustration and deregulation. I am hardly equipped to teach a kid, let alone special needs kiddos. Yet, we are trying our best to cope with assignments and still, both of us, end up yelling, in tears. Setting a good example, I made finger mazes with raised puff paint for each of us. When anyone gets escalated, the idea is to remove themselves, me included, do a maze, breath, reset. So far, I have failed to remember this! I’ll have to post it on my forehead I guess!

No parent is perfect, every parent is struggling. It sure feels like the struggles on my plate could potentially be exponential. Up until the end of spring break I have a free pass to sort of let it all go. Then learning has to begin, and the fighting, the horrible feeling of failing my kiddos as I have been thrust into this roll of not only full time MOM, CAREGIVER but also SPECIAL NEEDS TEACHER. Oh, and let us just add THERAPIST while we are at it…because who else will be able to help my youngest get through this? If only we could put it on a timer, count the sleeps…anything that he could tangibly grasp to help him know, it will end.

It feels like forever for him, forever for me, and like a really really really LONG summer for my oldest.

So

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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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