In a letter to his siblings, an autism dad spills the excruciating truth about his life: “It is hard to fathom if you do not live it every single moment of your life.”
By John E
I wanted to share a letter I sent to my siblings several months ago. I composed this late in the night after our 11 year-old son, Luke, fell to sleep. It is a stream-of-consciousness letter filled with raw emotion. It is a glimpse of what autism looks like in our family. Below is the letter.
Autism is many things, not the least of which are pervasive and exhausting. From the moment Luke wakes up to the moment he goes to sleep he has to have constant supervision. Thankfully he goes to school most weekdays, but for the past few days, his school has been closed due to Covid. He is a creature of extreme habit and any disruption to his routine is not tolerated very well. On the weekends K (my wife) and I take turns watching him. We are in a tag-team wrestling match with Luke which we never win – the best we can hope for is a draw. Sadly, there are many days when Luke wakes up – often before dawn – that my first reaction is I cannot wait until he goes to bed. I know in the interval between he will exhibit all sorts of aberrant behaviors!
It is hard to fathom if you do not live it every single moment of your life, the cumulative effect this has. Although we watch him as close as we can, at least 5 or 6 times a day he will pee/poop on the floor. And if we are lucky, it only stays on the floor. But sometimes as he runs to the bathtub – he hardly ever uses the toilet – he will grab the wall, furniture, or the bed, which in turn must be clean. While in the tub, taking a bath at least 8 times a day, he likes to splash and throw water out of the tub. The simple act of saying ‘no’ will often cause him to ‘flip a switch and become angry/hostile in a heartbeat at which time he will move in the tub and cause a wave spilling water all over the cabinet and floor. The cabinets have rotted and sometimes the water will leak from the light receptacle in the basement below. Not to mention we go through dozens of towels a day cleaning up all the messes.
Luke will throw objects many times a day. This morning alone he threw my phone and two television remotes down the stairs – the phone survived, the others did not. It is not normal that we go through a few remotes a week. Luke will often get food out of the pantry and throw it in the kitchen and down the steps. He has broken eggs, emptied containers of oatmeal, and chucked whole containers of juice down the stairs. Our dog’s bowls are often a target. He will throw food into the dog's water or just empty the bowls on the floor. If the laundry is stacked on the kitchen table and he gets mad the clothes will be spewed around the house, at times landing down the stairs which means they will have to be rewashed.
Phone chargers must be hidden, but he is good at hide-and-seek. Breaking them is bad enough but using them as weapons is even worse. All of us have been hit – and it stings – and it is only a matter of time before he hits one of us in the eyes. Lately, Luke has started head-butting us and even biting. We are pretty good at protecting our other kids but at the cost of sacrificing our own bodies. K and I appear at times to have been mauled by a lion. My scars are not as noticeable, but hers are always visible as a reminder of the rage that Autism brings.
We have so far been relatively fortunate, but Luke only must get in one good shot when we aren’t ready, and we are going to have a broken nose, arm, or leg. We also ride Luke around in the car at least 3 or 4 times a day – this will at times calm him. But even then, we must be aware of the thrown shoe hitting us in the head or the constant pinches and scratches on our arms and sides as Luke leans forward. The whole family riding in the same car is often impossible if Luke is ornery on a particular day – and even then, we don’t know this when we set out for the journey.
K and I know ahead of time the many things that will set Luke off, but the unexpected outbursts still happen. I will take Luke and the girls to the high school where I teach to watch a football game, but as soon as we get there if the concession stand does not have his pretzels there is an absolute meltdown and we leave a moment later. The girls understand, but it is nonetheless hard. My other kids will most likely seriously need therapy one day.
About 90%+ of all our attention and time goes to Luke. And this is not even the hard part. The worst part is when I speak with our Department of Mental Health worker and she asks me, “Have you thought about putting Luke into a home or an institution?” I want to physically attack her when she says this for the idea is so abhorrent, but also because I have thought about it. I hope it never happens, but as Luke grows bigger and stronger each day and as we grow older I do not know what the future holds. The neurologist says he only has so many arrows in his quiver to help Luke – we never know when we are going to run out!
K and I live in a CONSTANT state of exhaustion and anxiety. It is an overwhelming thought to think that the first 11 years in retrospect may have been the easy ones. Puberty will bring its own new challenges which I hope and pray we will endure. I could write for days but will stop now. I know K and I have not been very active with mom or even responding to emails, but most of our energy is making it from day to day. Even when I go to moms with Luke it is hard. He never wants to stay long and if I don’t bring Luke, K has little respite. We know we do not get out much, and we appreciate the offers to meet, but there is only so much we can do, and lately, it feels like we are on a sinking ship looking for pockets of air. People on the shore may look at us and wonder, "Don’t they know their situation is bad," but we are grateful for the little reprieves we have! Again, no need to respond or feel sorry, I just wanted to let everyone know we are doing the best we can, but autism is CONSTANT and EXHAUSTING!!!
John E is the father of an 11 year-old son with severe autism.
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