Welcome back to “Being A Voice!” First of all, I apologize for the delay. I had family in town on the weekend that I was hoping this would be up, and I stayed up to finish watching the third season of 13 Reasons Why, which effected my sleep schedule. In addition, I needed a little break from writing. Today, we are on the second-to-last post in this series; Adapting to Change! I hope everyone enjoyed reading the last post on services, and that all my parent readers found it helpful and informative.
Now, I know that change is hard for everyone, but it is especially challenging for me. As my mom stated last week, I thrive on routines and predictability. This isn’t just the case for me, it goes for many of us on the spectrum. I’m not saying that not everyone values routine and predictability, because honestly, who doesn’t? But for some of us on the spectrum, and perhaps others that are neurodiverse, change can be quite disruptive. It can come with unpleasant sensory input and trigger some less than desirable behaviors. Today, I, along with my mother, will be discussing our experiences in dealing with changes, and ways to positively cope and adapt.
Mom’s note: The topic covered below is about a major recent event which has certainly been top of mind in coping and adapting. But dealing with smaller changes – disruptions in daily routine – is a real part of our day to day life. More on that below.
The Ankle Fracture
June 28 of this year started like any other Friday. Well, except for the fact that I had already been awake from an all-nighter for no good reason at all. When Michael came, I realized I needed a haircut, so we went to Sports Clips to get that taken care of. Now, Michael and I like to race to the front door of wherever we’re going, and then back to the car when we’re done. So, we got back to my house, he books it toward the front door. In spite of my energy levels having been at an all-time low, I ran after him. Once I caught up, we were close to the door, and I shoved him out of the way, hoping to touch the door first. While I did win, I fell, and the outside of my right ankle hit the edge of the doorstep.
I almost had a panic attack just from writing about this…
It was the second most excruciating pain I had ever endured in my life. I probably cried for a good thirty minutes to an hour, because as you may know from the sensory post, all my senses are hyped up, which means I have a very low pain tolerance. After that, I hobbled my way into my room with Michael’s help, and remained there until my mom and stepdad came to pick me up. I’ve been staying at their house ever since.
Over the past couple months, I have had to adapt to change in a way I never thought I would. Well… never say “never,” right?
Showering was without a doubt the hardest thing that I had to do differently. At first, I was so afraid that I was going to somehow fall off of my scooter when transferring myself to the shower chair.
I was pretty independent before my injury, but since it happened, I’ve had to depend on my mom, my brother and Michael for a lot of things, such as help in making meals, or at least speeding up the process. It’s more difficult and time-consuming just to go to the bathroom, get dressed, shave, and just get from one room to another. I also feel very out of shape on a daily basis since I haven’t been able to go to the gym for my usual workout.
So, I said earlier that the initial break was the second most excruciating pain I had ever endured in my life. What was the first? Well, it happened after my surgery. After surgery, the doctors had me connected to a pain pump via a tube, which was supposed to help numb the pain. Less than 24 hours after surgery, the pump stopped working, and I started feeling immense pain from the stitches and whatever metal plates they put inside my foot. That was even worse that the initial break.
There are several things that have helped me cope with this. My mom gave me some relaxation meditations to listen to when I couldn’t get any relief. These helped me relax enough to sleep. Since I couldn’t put any weight on my leg for several weeks, I had to learn to do everything differently or with help. On the bright side, at least it wasn’t my arm. If it was, I would’ve had more trouble getting this website ready and writing all these blog posts. I have also come to realize how fortunate I am that this happened here, in my hometown, where I have such a great support system in my mom, my brother, and Michael. Had this happened in College Station, where I was still in a townhome where my room was on the third floor, it would have been a lot more difficult.
Around those closest to me VS around others
I talked about how I cope whenever I’m with friends in my post on sensory, but I believe it is relevant in this one, as well. When I’m around them, or whenever I’m making new ones, I like to make and keep a good impression. So, whenever I’m with them, and things don’t go quite as planned, I try my best to live in the moment, and understand that there’s nothing I can do about it. Whenever I’m around my mom, brother, or Michael, the belief that they can and will fix everything instantly kicks in when plans go awry. With them, I am more defiant towards going with the flow or without something I believe I need to keep my world intact.
Mom’s Input: Like most of us, Johnny’s worst behaviors happen with those closest to him. I like to say we reserve our special behaviors for those we love the most. He will deal with all manner of discomfort at social events and summer camps but become very defiant with me about running out of ranch dressing. He’s even volunteered at a camp helping others with special needs adapt to change while managing his own discomforts. I have to constantly remind myself that he can handle more than I let him. I have to allow his discomfort in order for his adaptive skills to kick in. It’s really okay for Johnny to experience the discomfort of change because that’s how all of us grow.
What I’ve witnessed about adapting to change is there are two separate parts of it. There is the fear or anxiety about the change (or disruption to routine). Then there’s the actual adaption to the change. This is where the brain starts figuring out how to problem solve and deal with it. Recognizing the fear stage for what it is and moving through it to adaptation is a big key.
Earlier I mentioned smaller daily disruptions. This might be the Wi-Fi going out, waking up 10 minutes late, or having a new aide at school. For Johnny and others on the spectrum, reactions to these can seem disproportionate to the cause. And the larger the reaction, the more difficult it is to recover from it and move on about the day.
Once Johnny gets past the reaction stage, his adaptation skills are pretty amazing. With the ankle fracture he had to get used to a boot, a splint, a cast, a knee scooter, a walker, and all daily tasks required different motor planning. He was afraid to put the boot on by himself – afraid of pain and doing something wrong. Once he accepted he could do it and had to do it, he figured out how and got very good at it. The walker and knee scooter were difficult and tiring for him to use, but he learned to move very adeptly with both. He figured out how to get in and out of the car and the shower and around public places. I’ve even had to tell him to slow down, so he doesn’t run someone over (like the server at Pluckers)! Sometimes the motor planning is a little different but it’s what works for him and allows him greater independence.
Getting over the daily disruptions can still take some creative cajoling. Just in the process of writing this post we have had several discussions about the brain and how to get past the fearful reaction stage a little faster. With age and maturity, he can understand these concepts and recognize his own behaviors. He is still very set on his distinct preferences, but he’s learning more tools to help him manage his thoughts and actions.
Johnny’s reactions to major life changes look different than the daily life disruptions, and these are the sneaky ones I’ve had to watch out for as a parent. When he changed schools, he didn’t have daily meltdowns about it, even when he was being bullied. He tried to roll with it but was internalizing the feelings and became very depressed. When he was 6 and his dad and I divorced, he lost weight, talked less, and stimmed much more. Extreme stress impacts his communication so it’s even more difficult for him to verbalize what he’s feeling. Each big life change brought some level of internalized stress that was not immediately obvious, but he definitely needed extra support to get through it. There were times I didn’t immediately see the signs. Thankfully something would inevitably get my attention and we would put a plan in place to help him.
Overcoming Fear of Change
I’m beyond ready to move into my apartment with my brother. I haven’t been able to get up there since the injury, because, well… it’s up there. As in it’s on the second floor. And sure, I’m at the point in my recovery where I can put some weight on my bad leg, but right now, it’s only a certain amount.
One of the biggest blessings about being at my mom’s in these past couple months, besides the quality time, has been the mobility. There’s no stairs to go up and down and I can use the separate shower which allows me to transfer myself from the knee scooter onto the shower chair and close the door with stability. It’s not easy but it’s gotten easier over time. The shower in my bathroom at my apartment (I was able to brave the stairs and see it last weekend) is also a bathtub, so the idea of having to manage that without a misstep that could accidentally put all my weight on my bad leg, resulting in immense pain is daunting.
My mom brought this up a couple days ago, and I was terrified. My mind instantly went to the worst-case scenario. But the fact is whether you’re dealing with an injured leg or running out of ranch dressing, the consequences are the same, DISCOMFORT. And the skill to overcome your fears is the same. One of those skills is actually quite simple: breathe.
Mom’s Input: Taking deep, slow breaths is one coping mechanism we’ve used. This gets more oxygen to the brain while signaling the body and brain to relax, which interrupts the thoughts of fear that the brain is having. By interrupting the thoughts and relaxing the body, the brain can shift into problem solving mode and start coming up with ways to adapt and solve. Some other tactics Johnny uses are putting his hands on his own shoulders firmly, then taking some deep breaths. The pressure helps him to get centered and stay present – not letting the mind race ahead. He can do these anywhere at any time with minimal or no disruption to anyone around him.
In wrapping up this post, I asked Johnny to answer these questions: How do you hope others will treat you when you are coping with change, and how do you want to be able to treat yourself?
Answers…
I hope that others treat me with understanding, and that they know I’m doing my best. I also hope they know that change can be very difficult for me. I don’t want to see myself as a no-good, constant screw-up whenever I slip or come down too hard on myself if I don’t adapt very well, or if I don’t think I’m adapting fast enough, and I don’t want others to see me that way either.
One of my biggest fears with being on the spectrum is being a burden to other people, which is why this aspect of my life can be frustrating. Yes, I have learned and matured over time, but there are plenty of times where I act up due to the initial discomfort of change. As a result, I feel like I’ve lost progress, and I’m just being a spoiled little boy. I hate that feeling. It takes a lot for me just to breathe, calm down, and overcome the discomfort, and the fact that it does take a lot results in that feeling as well. But in order to alleviate my fears of being a burden, it’s just one of those things I have to keep working at. Because the more I practice it and do it, the less I’ll feel like I’m making things difficult for others.
Now I want to relay my mom’s question to all of you. How do you hope others will treat you when you are hoping with change, and how do you want to be able to treat yourself? Parents, what hopes do you have for your child?
Once again, I am sorry for the delay on this post. Thank you for reading. If you found this post to be helpful or think it will help others, please share it wherever you can. I’ll see y’all next time!
Puzzling Life 