Yesterday was a bad day for Sawyer. Trigger warning: this entry will discuss acts of self harm.
When he got off the bus at the end of the school day, I could tell right away that something was wrong. As he got closer to the front door, I could see tears in his eyes, and the moment he stepped inside, he fell apart.
It took me about 5 minutes to get him calmed down so he could tell me what was wrong. I was so worried that someone had hurt him in some way or that he had gotten in trouble for something- both of these would be reasons he could be so upset. When he finally managed to tell me what happened, I was relieved but also sad for him: someone stole his pencil and highlighter off his desk.
This is the third time this year that someone has taken his pencil. Last year he had issues with people taking his pencils, too, and putting his coat or other things like a brand new beanie he got last winter in the trash can. At this point, I’m sure someone is doing stuff like this to mess with him, but that’s a story for a different day. I reassured Sawyer that it was ok because we have plenty of pencils and I can always buy him new highlighters if he needs some, but that was not the point. In his mind, someone stole his things– he felt like it was a personal attack against him. In Sawyer’s mind, he wondered why anyone would want to be mean and take his stuff. I said maybe someone needed a pencil and couldn’t afford to go get their own, or maybe they didn’t realize that it was his. I hugged him with tight pressure to calm him, a technique I learned years ago from his therapy team back in Tennessee, and after a few minutes his crying subsided.
Just when I thought I had calmed him down, I had to go finish something for work and I heard a strange thumping sound. I called Sawyer into my office (I work from home), and asked if he was hitting the wall. He looked at me with sadness in his eyes and he said “No. I was hitting myself.” It was only then I noticed the redness on the side of his face.
In that moment, I felt so much. Sadness. Anger. Panic. Fear. My heart hurt so bad for my little guy, and I nearly broke down crying with him. I pulled Sawyer into my arms and did my best to comfort him, and explain that we don’t hurt ourselves when we get upset about something. I told him that hitting himself does nothing to change what happened to make him so upset- it only hurts him so he’s not only hurting inside and out, and it can be dangerous if he hurts himself bad enough. I explained that sometimes when we get mad, we all feel like hitting something, but that we should hit something like a pillow instead so we don’t hurt ourselves or anybody else. I offered to get him a Dammit Doll, but he said he didn’t want “a Dang It Doll” (my sweet boy will not cuss, even if I give him “permission” LOL). In my mind, I thought about the days when he was a toddler and couldn’t speak much, and he would slam his head into walls, tables, and counters when he got mad or upset; there were a couple of times I was terrified he had given himself a concussion. As I hugged him tight, I worried about the possibility that one of these days he might get a knife and use it on himself. The thought was almost too much to bear.
It sounds ridiculous- I know- that a kid could get so upset over something so small. I know all too well how some people may read this and think I’m being dramatic or that he just needs to “toughen up”. But that’s the thing with autism… What’s “small” to you or me can be the end of the world for someone like Sawyer. People on the spectrum thrive on sameness and routine, whether it’s using the same pencil every day, wearing the same hoodie or shoes every day, or going to the same places day in and day out. When that routine is interrupted or changed- especially without warning- it can cause meltdowns like the one Sawyer had yesterday. Why? Because routines make those with autism feel safe and secure and in control of their surroundings in a world that is pure chaos to them. When that routine is disrupted, it is scary and upsetting to them- it really does feel like the end of the world as they know it. A quick search on Google explains why routines are so important to those on the autism spectrum:
Predictability: Routines help people with autism feel more comfortable and in control because they know what to expect and when to expect it.
Repetition: People with autism tend to learn best from repetition and sameness.
Stress Relief: Routines can help people with autism manage stress and anxiety.
Order: Routines can help people with autism make sense of their surroundings and learn how to react to new sounds, behaviors, or events.
Positive Habits: Routines can help people with autism establish healthy habits that impact their mental health and wellbeing.
As I was talking to Sawyer about why he felt so upset, he said some things that broke my heart to hear. He said he felt like his pencil and highlighter being stolen was his fault, because he’s “stupid”. I told him that was absolutely not true, and explained that we can’t control other people’s actions, and that not being able to stop something from happening doesn’t make us stupid. He said “But I should have been watching; I should have paid attention.” I said to him that our eyes only face one way and we physically cannot see everything that’s happening in a room all the time- it’s just not possible. And we can’t beat ourselves up (literally, in his case) over things we can’t stop or change.
Then he asked why God hates him because “bad things always happen” to him. I told them this is absolutely not true, and that God and everyone else love him so much. I explained that bad things happen to everyone– not just him- and that we have to choose to focus on the good in our lives because if we just focus on the bad all the time, we would all be so miserable. I said that some people are just mean and hateful because they’re not happy in their own life, and they do things to make others upset because they’re upset about something. Then I started telling him about all the people who love him, giving specific examples of family, friends, teachers, and even strangers that love him because he is so sweet and kind most of the time. I told him about how his former teachers tell me all the time that they miss him and his hugs, and reminded him of how much his sisters and I love and adore him, and how his laugh lights up my day and makes me feel happy even on my worst days. It seemed to help a little bit, but not much.
I was at a loss for how to help my son. I tried our usual exercise of naming 3 good things about the day, but that didn’t really work this time. I reminded him of our plans to go to his dad’s this weekend to spend time with Caitlyn and his dad, stepmom, and younger sister, and that seemed to work a little but in the end only time, hugs, and some McDonald’s chicken nuggets (his favorite thing) worked to ease his mind. It took a couple of hours to get him to smile again, and even then, he wasn’t totally back to his normal self last night. He smiled and danced at the football game as we watched Caitlyn perform with her color guard and band, but when we got back to his dad’s house, he asked some of those hard questions again and his stepmom and I tried our best to answer them and make him feel better.
These are the times when being an autism parent absolutely sucks because I don’t know what to do or say to make it all better for him. His mind doesn’t work the way my mind does, so reasoning with him or trying to distract him from his pain doesn’t always work, and that is hard. As parents, we never want our kids to be sad, and when they are we just want to make it all better.
I was angry at whoever stole his pencil and highlighter, and frustrated that something like that could upset my son so much. I was sad that I couldn’t make him feel better immediately and appalled at the knowledge that the thumping sound I had heard was the sound of Sawyer punching himself in the face and hitting his head against the back of our couch. I was worried that he’d bruise from the self harm he had inflicted and scared that someone would see bruising and think I had hit him. After I got him his beloved chicken nuggets, he fell asleep on the way to his dad’s house, and the entire ride, I kept thinking about the whole situation and wondering what I could do to try to prevent this from happening in the future. There is no way to know how and when unexpected changes in our day will happen. But how do I help my son so that unexpected changes or events don’t cause a meltdown? And how do I help him develop healthy expressions of his anger and sadness to keep him from hurting himself or someone else?
He’s 11 years old… In my mind, he’s way too young for this. I worry about the future and how much damage he could do to himself or someone else when he’s older, bigger, and stronger if we can’t find a way to keep him from getting so upset. I think about my friends who have had to commit their children to institutions because they got so violent. I think about the parents who have had to put their young children on medications that numb them and take their personality away just to keep them from hurting themselves or other people. And then after I worry about all that, I worry about who will deal with all this when I’m gone. It’s so depressing, and it’s no wonder my hair is so gray at 42 years old.
While I normally like to keep things positive, uplifting, and funny, these are the moments that are the most real. These are the things that autism parents have to think about. I understand that all parents have worries and nobody’s family life is perfect, but unless you’ve thought these same thoughts, you can never understand just how dark and depressing life as a special needs family can be sometimes, and that’s why I write this blog. I have to share these experiences to help others understand what autism families go through. These are the moments I have to share with the world; this is life with autism. Most of the time, Sawyer is my easy going happy-go-lucky kid who is full of laughter and hugs and I see the positive side of autism: that my child is open and honest and so full of love and happiness because he doesn’t live with pretenses. He’s not trying to be anyone but who he is, and he loves and accepts everyone for who they are, and I absolutely love that about him. But sometimes he has days like yesterday- days where something as small as losing his pencil can set him off and send him into a downward spiral where he’s hurting himself or possibly trying to hurt others- and it’s sad, and hard, and ugly.
