The topic of this writing can be interpreted as vague and I’ll do my best to get to the point of it all fairly quickly. OK, how about now… this is the three word descriptors that I have been using for about a year now that helps me convey to people what I want most for my son, Shane. For those new here; Shane is our Autistic adult son. Shane is now 22 years old, he is non verbal and has some other challenges including aggressive behaviors and seizures. As Shane became of “adult” age at 18, my wife and I went through the process of establishing Guardianship of Shane – twice! In fact, we had to go through the process in Florida when we moved there briefly (see previous blog posts on that adventure) and then we had to go through the process again when we moved back to Minnesota as Guardianship legalities do not reciprocate in all states. Even though you are a child’s parents – it doesn’t give you automatic Guardianship of that child when they reach 18 years of age – regardless if they have a disability or not. Through that process we answered questions upon questions about Shane and “for” Shane. Questions like: Does Shane need assistance with _____ (insert daily activity here)? What does Shane do during the day? What are Shane’s likes and dislikes? And a lot of these questions are just normal questions for someone to breeze through. During Shane’s assessments and evaluations for school and special services – these questions usually have more of a direct impact on some potential planning and some sort of action plan set ahead – like in an IEP or Community Plan. So Brooke and I have been used to giving blanket or generic responses that just seem like what everyone else would answer. Don’t get me wrong, the answers are accurate and true, we just don’t think about the responses like we used to 20 years ago. For example: Shane’s likes are always the same: McDonalds, watching videos, doing puzzles (occasionally), swimming, swinging, being tickled, going to the beach (when we visit Florida) and being left alone when he wants to be. That’s pretty much it. We can nitpick more on some things but with Shane, his likes can come and go and we’ve learned to stick with the things that bring him the most joy most of the time. His dislikes are just as easy to remember because they’re usually the things that piss him off the most or set off behaviors and aggressions. He hates dogs barking, babies/kids crying or screaming, loud machinery, bright lights, trying new foods, being told “NO”, and he very much hates when “his” routine is interrupted. Again, these responses are pretty much blanketed on most questionnaires and what we tell people when they ask in conversations.
But recently, as Shane has been going through some severe challenges with aggression and routine challenges as well as lifestyle changes around the house, I’ve been thinking (see what I did there?) more about simplifying what I believe Shane wants and it has helped better plan for Shane and his daily needs. Shane recently “graduated” from his transition school here in Minnesota. At this program he attended for about 6 years, he was regularly engaged and challenged. He was pushed to succeed and he also pushed back – sometimes hard. He had his fair share of challenging days and his team around him were able to handle things to keep him safe and help control the situations. As time went on and Shane established a routine it seemed most days he was content and the challenging behaviors were less and less. But then the pandemic hit and schools shut down. And every child who needed school, needed the routine, needed the help, needed the engagement – was virtually left to figure it out. Children and adults with disabilities were hit just as hard or even harder and their lives were turned upside down with many of them losing the much needed services and schooling. During this time Shane’s behaviors escalated and aggressions eventually peaked to a panic mode for both Brooke and I. Our daughters were scared most days of being around Shane. Brooke and I started to make sure that one of us was always at home and with or around Shane all the time. We took the brunt of his aggressions. We treated the cuts and bruises, we swept up the broken glass, we replaced the remotes and TV’s and DVD players, I learned how to replace iPad and iPod screens, and I devised a screen protector for the TV to prevent breakage. All of this happened until we finally had the heart to heart with Shane’s Doc and came up with a medicine that would eventually help. For what it is worth – it has helped ever since and we can only hope it persists. After all this happened and now that Shane is home ALL the time, it was challenging to answer the questions we were being asked before. But mostly, it was a challenge to answer the question: “What do you want for Shane?”. Again, he’s with us all the time now. After all the ups and downs of the last few years and the emotional rollercoaster we ride, I can say these three words are what it is all about – Safe, Comfortable and Happy.
A priority of any parent raising kids should be to keep them Safe. This isn’t about being a helicopter parent (although Brooke would agree that I am when it comes to Shane) or that we are there for every bump and bruise they experience. But rather we prepare them and help them to learn to keep themselves safe and how to take care of themselves so they can help others too. I truly do worry about this. But I know my daughters can handle a lot of things and I trust them to seek safety when they are not sure. With Shane, it’s different. We have to be the ones to keep him safe at all times. And plan things more meticulously than other families may have to do. Things change, accidents happen and you don’t know what you don’t know. But it is a goal to keep Shane as safe as possible.
Most of us can control our ability to be comfortable. To be satisfied. And to be content. To adjust ourselves to a situation as needed to move forward and maybe even be successful. A person like Shane has difficulty with this. Shane doesn’t know how to control his mood or emotions. He doesn’t have the ability to “ignore” something or to leave a situation if it doesn’t “feel right”. These are characteristics that many people with Autism struggle with. So how does someone like Shane make themselves comfortable? We don’t know a lot about this but we’ve learned to read Shane and his body language, his mood or facial expressions that can tell you a lot if you are looking and listening and following along. It’s hard to do and something that many parents or caregivers need to spend countless hours doing if they want to know more. Making Shane comfortable involves a lot of planning and having back up plans ready too. A great example with Shane is how he likes to go to the store. Shane actually does fairly well trying to say it but it comes out like “tore” and in our part of the world is means Target, which he also tries to say and it comes out as “tuh-get” and it’s still amazing to see him try to say words out loud. Anyway, we plan these rare trips when both Brooke and I can go, we pick a time of day when we hope fewer kids/babies would be there, we go to the least busy of the 6 Targets near us, we have a “gummy” ready (CBD gummy) and we keep our own mood and excitement as high as we can to help Shane stay happy too. This is all part of keeping Shane comfortable. Similarly, we do this planning and prep at home and, in all honesty, much of making Shane comfortable comes at our expense too. During a lot of the year (not during the winter) we like to open the windows around the house and keep the fresh air flowing and let the breeze in. We know there are outside sounds that come and go from neighbors walking by, kids on bikes, dogs barking occasionally and even lawn mowers are heard. If the windows are open and Shane hears those things he will go and close all the windows. At least now, doesn’t have additional aggressions and outbursts that lead to additional issues, he just closes the windows and goes about whatever he was doing. So we live in a stuffy house until we turn on the A/C or we just keep opening and closing the windows like a chess match. Shane’s comfort is a very important part of daily life. It has also allowed us to be responsive to Shane’s seizure activity as well. Shane started having seizures over 4 years ago and they started very infrequently and have become more frequent although still happen at random. So we will continue keeping Shane’s environment at home as comfortable as possible; but still, things happen and there’s usually not a problem until there’s a problem. It often takes moments of being UN-comfortable to realize what it takes for you to be comfortable. It doesn’t always happen, but knowing where your comfortable points are – we usually call it a “comfort zone” – is important as well so you know how and when to get to that place. We hear a lot of talk about “getting out of your comfort zone” which makes sense and for many of us we can handle that process. But for others, finding their comfort zone is just as important.
We have seen that if the first two things are being addressed and Shane is Safe and Comfortable… he’s pretty darn happy just by default. And by happy I mean he can be just sitting in his room watching his videos and that is his happy time. He could also be sitting at the kitchen table having a snack and some juice while laughing his ass off at a video he’s watching his iPod or iPad. Currently – a favorite of his is watching part of a scene from Home Alone 2 when Harry and Marv are going through the house getting beat up by the booby traps set by Kevin. Shane will laugh and laugh when Marv slips on the floor and crashes into the paint cans! Or when Harry makes the move to jump and grab the ladder and falls flat on his back with a glob of grease then plopping on his face – it’s very funny to Shane! And those are happy moments. Brooke and I will keep them in our hearts at all times. These are the moments that make US happy too.
Shane having a snack and enjoying the movie scene
As these three words have formed a basic vision for Shane both now and in his future, I also see them being important for my daughters too. In reality, if they can drill down to these three things then I hope their future will be what they truly want and they get there by doing what they want to do because it makes doing what you have to do a little easier. In no way am I suggesting any of these parts are easy and that they are the only way to live. But they may just help any of us live simpler, and not let the little things dictate our lives (something I still have to work on), and they CAN help dictate our attitude. And that can make a huge difference in a positive way. Be Safe, Be Comfortable, Be Happy!
I've Been Thinking 