Autism Uncensored

My son has severe autism and is non-verbal. He is now ten-years-old. He has been on some adventures let me tell you! When I try to tell people the “Many Adventures of SJ” people can never believe the things I tell them. I always say some day I will write a book on all of it. Everyone wants to talk about the things like therapies, treatments, medical appointments, and the struggles that come with being an autism mom, and all of that is important, but what I don’t see much of is the day to day things that happen. I know through his “adventures” I always felt alone, I wondered if anyone else had stories like this in day to day life. This post will be where I write those stories. No parent should feel alone in this journey. I found my people talking with other parents. I wasn’t alone. These stories I can look back on and laugh, though at the times I was scared. Here we go!

When SJ, my son, was around four years old, he went missing. This was the first time he had ever ran away and the start of his elopement. I had a newborn at the time and twin daughters age three. I was changing my youngest diaper, and my mom was getting the twins dressed. I was going to work and she was going to take the kids to a parade in her homwtown. The house was quiet, too quiet. We both yelled at each other at the same time “Where is SJ?” We ran to the living room to see that the baby gate was open and so was the front door. We looked every where for him but couldn’t find him. I called 911. The police showed up and searched the house. I was a mess. I was running around barefoot, booty shorts, and a white t-shirt with no bra crying and screaming for my son. I didn’t care what I looked like, boobs flopping everywhere. I had to find my son. When the police couldn’t locate him, they called in the fire department to assist in the search, since he liked fire trucks they figured that he would come to them if they drove around the apartment complex with their lights on. My mind went to the worst, a short distance from our apartment door was the expressway and there was no barrier there. I about passed out thinking of it. There was also a pond not far from our door. They searched the pond with no luck. They had police looking along the expressway but didn’t see him there either, that was a relief, but where was he? An hour later they found him. He was up over a hill about halfway out into the soybean field eating the soybean plant leaves. He must have gotten hungry on his little adventure. They brought him home in the fire truck and I ran to meet him and threw my arms around him and hugged him tight. Scariest day in my life… so far.

Shortly after he had gone missing, maybe a few weeks later, SJ was in his room and I was taking a nap. There was a baby gate up across his bedroom and he couldn’t get out but I could hear him if he needed anything. I was woken up to a knock on the door. The lady that lived across from our apartment was there. SJ was naked standing on the window ledge and had managed to open his window. The window had no screen in it either. The lady was scared SJ would fall out since we were on the second floor. I thanked her and hurried to his room. Sure enough he was standing in the window naked and the window was opened. I closed it, got him dressed, and found a way to lock it so he couldn’t open it again using a wooden board.

One day I was cleaning and SJ was in his room again, but I could smell this awful smell. I knew that smell all too well, poop. I followed my nose to where the smell was the strongest. It was coming from SJ’s room. I looked in, and there was my son standing in the middle of his bedroom floor, naked, and covered in poop. It was all over himself, head to toe in poop. It was all over his walls and windows. He had painted with it. This was the start of his poop smearing.

SJ has PICA, which means he eats things he shouldn’t. Up until this point it had been things like fuzz from his diaper and clothes, stuffing from the couch cushions, the filling of his diaper, sand, dirt, plants, rocks… but this day it was batteries. He had managed to undo the back of one of his toys and chewed into small pieces a battery. His face was covered in this black stuff and his mouth was red from the burns. I called poison control who told me to call 911. I did. Even the ambulance crew couldn’t believe he had chewed up and at a battery without managing to break his teeth! We went to the emergency room where they discovered he had burnt his mouth and tongue, the x-ray also showed the many little pieces of the battery he had ingested. Luckily the doctor believed these would pass with no problems and we were sent home, but the doctor asked to keep the baggie of the pieces of the battery I had managed to get out of my son’s mouth because he had never seen anything like this before, he could keep those pieces. That was fine with me.

When I met my husband and we had moved in together, Jordan had a rude awakening to life with an autistic child. In our trailer, in the closet of my son’s room was the hot water heater. We didn’t think anything of it. There was a board in front of the drain plug and neither of us thought he could get to it… we were wrong. One day we heard water flowing. There was water coming from under SJ’s bedroom door. We opened it and found SJ sitting on top of his dresser plugging his ears. He had found the drain plug and opened it, but he didn’t like the sound of it so he jumped on top of his dresser and was sitting there covering his ears. He flooded the trailer. It was a mess.

Shortly after the trailer flooding, SJ smeared poop all over his bedroom walls, windows, bed, and himself. I was used to this, my husband was not. His gagging was probably the comedy relief I needed to get through the cleaning process. If those walls could tell stories… they would stink.

With SJ having PICA, as I explained, he eats things he shouldn’t. SJ was starting to show how bad his aggression could get. He had kicked a hole in the drywall in his room. He had ate a huge hole in the wall by eating the drywall. We fixed the hole, replaced the drywall. He didn’t like this. He kicked another hole in the drywall just below his window. He ate through the drywall, ate the insulation, and pretty much ate his way out the side of the trailer because the siding of the trailer was exposed. We fixed this, but what a mess. That kid has a stomach of steel!

One day my mom was over at our trailer watching SJ, I had been at work and got home in time to pick up the girls from the bus stop before heading home. When I pulled into the driveway of our trailer my mom met me, SJ had run away. She ushered me to where he was. He was stomach deep in the middle of a septic pond! The smell was so disgusting. I tried to talk him into coming out but he went deeper. He was now neck deep. I had on my brand new tan pants and did not want to ruin them to go get him. My poor neighbors had to watch me strip out of my pants and down to my thong, I waded out into the septic pond in me thong and t-shirt to go get him. The amount of showers and baths we both took just didn’t seem to be enough to get that smell out of us! It took weeks to get that smell out!

Another time my mom was watching the kids, I was at work. She called me to let me know she had called 911. SJ had run out of the house in just a diaper. The police caught him, he was out of the trailer park, across a busy street, and running into the woods in just a diaper. At least we could all laugh about it.

When we moved into our house, the neighbors next door have a trampoline for their sons. SJ loved this. Before we installed new window locks, SJ had figured out the original locks and climbed out his window early in the moring before anyone was awake. I woke up to the neighbor boys ringing the doorbell at seven in the morning. I answered the door to one of them saying “Your son is asleep on the trampoline…naked.” We changed the window locks.

SJ was out and about in the house, I was busy doing things around the house. We have groceries delivered because it is just too much to try to take SJ into a store. He has meltdowns bad from the people and the lights and sounds. This day groceries were already bought and the shopper was on their way to deliver them. SJ was playing in his sister’s room. What I didn’t realize is he had gotten one of the windows open and pushed out the screen and jumped out. I received a text from the shopper delivering our groceries “Hey um… your son is on the porch naked.” I grabbed a blanket and ran out to the porch, wrapped him in the blanket and rushed him in the house apologizing to the shopper.

Another day my husband was home with the kids and I was at work. I received a phone call from my husband. He had been taking a nap and SJ had some how managed to get out of the house. My husband was woken up to a police officer knocking on the door. When he answered it the officer said “Hey, do you happen to have a little boy with brown hair about this tall…” that’s when SJ ran by them… naked. The officer pointed and said “Yeah, that one!” Jordan “Yep, he’s mine.” Jordan ushered him into the house, we really had to work to find window locks and door locks to outsmart SJ.

When we found window locks that actually worked, SJ decided to just punch the glass out of his window instead. This led to having to call my husband who was at work to come take SJ by ambulance to the hospital because he cut his hand and wrist very deeply requiring stitches.

Everything kind of calmed down after that. We boarded up his window because the locks didn’t work, he just continued to break the glass and that was dangerous. Once his window was boarded up everything was fine. The elopement stopped

Then that one day… SJ was sleeping in, and I figured I would go back to sleep until he woke up. Big mistake. I woke up to SJ screaming but it was a different scream then I have ever heard before. This scream was one of pain but also kind of gurgling. It was followed by the smoke alarms going off and then the dog barking. I ran as fast as I could into SJ’s room to find him standing over the electical outlet in his room which was sparking and smoking. I called my husband at school panicked and asking him what to do. SJ had started an electrical fire in his wall. My husband is a fire fighter so I figured rather than call 911 I would just call him. He told me to run downstairs and flip the breaker to SJ’s room. I did that. I could now see what SJ had done. He had PEED on the electrical outlet. It was completely black and burnt, I ended up having to take SJ to the hospital by ambulance because he had some burns in a very sensitive area and because the shock alone was scary enough. SJ was ok. The burns healed with no problems and his heart had suffered no damage. My husband took that outlet out and deleted it. We can laugh now about his SHOCKING experience but man… these stories are comical and all but when they were happening it was terrifying.

When my mom passed, I had gotten her ashes, and I was working on filling the necklaces I got for the girls and I. I had turned my back for a split second to fasten my daughter’s necklace for her, when I turned back around SJ was licking something off his hands. He had reached into the urn and ate some of my mom’s ashes. I guess he wanted her to always be a piece of him. I guess she will always be part of him now.

These are our stories. We look back and laugh. You have to find the humor in it all. Autism is not easy. It’s mess and difficult, but we find ways to smile and laugh. These are just a few of the many adventures of SJ. I am sure I will add more to this as he continues to grow… his adventures aren’t over yet I am sure. Raising a child with autism can be so lonely and these moments can drive you crazy. It’s hard. It’s brutal. It can also be something very beautiful and fun and exciting. Raising my son with severe autism has opened my eyes to so many things, SJ teaches me every day that love doesn’t need words, and exactly what unconditional love means. It teaches me strength and courage. Despite his “disability” SJ has never once let it stop him. He is the most happy, sweetest, and caring guy you have ever met. He shows me how to find joy in the simple things. His laugh is contagious. His heart is pure. This is autism uncensored.