An Autism day….

Some days are just…tough. I try very hard to remind myself how great we have it with my kiddos, our situation, and the love and amazing moments we have together. But then….some days I am only human and I just can not wrap my head around it all still.

For example:

WHY?????!!!!! My 5 year old woke up this morning sweet and snuggly and happy. You never know at this point though what kind of day you will be having. For him, it could go either way. Unfortunately, something was going on in his little noggin of his and he is not verbal in the sense of communicating what is in his head really. Words he has, sentences sure, paragraphs!!! ALL. SCRIPTED. Generally, we as a family, even my ASD/ADHD 7 year old, can figure out what my younger one is trying to say but today…nobody figured him out. He started off by removing his diaper before I could get his onesie on. I know I know….should be first priority! Usually it is. Last night however, my big boy broke out in a serious case of hives, cause still unknown, and our sitter had to phone us and send photos in which we rushed right home, of course. He is fine. Calamine lotion with a cotton ball on the itchy bits until the Benadryl kicked in. Then blissful and mainly restful sleep. Also, my husband is suffering this terrible cold we have all had. It is more annoying than anything, itchy cough at night, that sort of thing. He woke at 4am and I was up after that for a while. Point is….we Parents were tired! We did not sleep enough or well enough. We had a 7 year old in our bed which we love but he does talk a bit and move around.

Back to the point of the story, my 5 year old removed his nappy and emptied the poop stones on the floor. I had to get him redressed, this time with the onesie and the whole outfit!! Shirt, pants, etc. I begin cleaning his poop off or carpet with our amazing super powerful deep cleaning Bissel while my husband tries to get an hour sleep. I finish after about 15 minutes or so and bring the Bissel back through the kitchen on my way to clean it and empty it….put it away. I stop dead at the door as I see my 5 year old sitting on the counter on the other side of the sink and spraying the countertops with water!!!

So…literally, water was FLOWING over the countertops and down the cabinets. Waterfall. Picture it. He had been doing this for a few minutes at least!

I ditch putting the Bissel away and cleaning it out…and begin mopping up the water which of course, as water does, goes anywhere and everywhere it can find a way. The house we are in is old. It needs new grouting and sealing along the backsplash and between the cabinets. Dripping and trickling sounds are coming from behind my cabinets. Pulling out every single kitchen towel from under my sink, I just start throwing them all over the big pooled areas. Instantly, they are soaked through because there is that much water! As I get the water to stop flowing over and contain it a bit, I go see what my little monkey is up to while I am cleaning up his current mess.

He has undressed and is totally naked running around the living room I just cleaned up. Knowing there will surely be more poop to come, I leave the kitchen, towel him off and re-dress him. I go back to the kitchen. I keep cleaning. The kids go outside so I install the new lock for the pantry door to keep my 5 year old out. (That’s another story).

After than, I decide I have a moment to have coffee finally and make it. This still takes several attempts as I am interrupted by both boys constantly.

I wish I could say I had a calm down moment of peace but no. Not even 5 minutes later and I hear chaos ensuing front he living room again. Daddy is dealing with my 5 year old and fills me in on his spectacular smudging of his poop, thick and clay-like, all through the living room. You see, he suffers from encopresis and so the control of his bowels is iffy. The feeling of his dirty diaper is not something he likes so he wipes it wherever he’s at. It is an awful stage that has been going on for 9 months now. Thus the new Bissel. Which I bust out again, reload and begin deep cleaning the length of carpet he has managed to soil. It is an impressive 10 feet or so I would say. This takes me a while.

If only this was the end.

Our diving board needs to go. It is rusted and bolts are missing and besides, they are dangerous. We have been planning on this for a while. I finally asked my husband to go take care of it as my 5 year old can now vault the 4″ gate that surrounds the pool and will often stand and bounce on the diving board. He does this. My 5 year old gets stuck in his climbing tree. Climbs too high up these days. He is also, without clothes. Again. Another outfit and thankfully, Daddy takes the boys to the park to blow off steam!!!! I am here, getting this off my chest and hoping that tomorrow is a better day.

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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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