I just figured something out. I experienced one of those “lightbulb moments” that don’t come nearly as often as I’d like. I just saw the relationship between a particular behavior pattern of mine and the situation in which I find myself living each day. Kind of like figuring out that I’m on the spectrum, this doesn’t really change the nature of me or my situation. But suddenly my frame of reference has shifted, and somehow that makes a difference in how I feel about things.
I’ve always been very much a “live and let live” sort of person. Not only do I not feel a need for others to believe what I believe or act as I do (provided they aren’t hurting anybody), but I actually think it may be necessary and important for them to believe or do something entirely different. We are each unique individuals with different brain chemistry, skill sets, belief systems, and life experiences. What works for me may not work for you at all. We may be at different points on similar journeys, or we may be on different journeys entirely, since we all start in different places. I enjoy sharing with others and having them share with me so that we can possibly benefit from one another’s different perspective and insight. I really don’t feel a need to decide for someone else what they should think or how they should feel. Mostly. Except there’s this thing with my kid.
Once again, I don’t feel a need to insist my kids embrace my personal belief system. It keeps evolving, anyway, so it’s not like it’s something they could adopt and be done. And I don’t get to decide that for them ultimately, anyway. I share my views with them, but I also let them know about other people and others ideas. Whatever decisions they make, I’d like them to do that with information and not out of ignorance. And I share ideas that I’ve personally found helpful in terms of managing conflicts, dealing with difficult feelings, and coping with physical issues like sensory overload without necessarily expecting that they will adopt them – I can only hope. I feel pretty good about all that. But I seem to have this huge problem accepting my kids’ negative feelings. And I think I’m starting to get why.
I can remember getting really annoyed with my mom years ago – prior to my son’s diagnosis – when she suggested I was too concerned about making my then-only-child happy. I considered myself too evolved to try and control another person’s feelings. Except, I learned later that she was right. I don’t just want for my kids to be happy. On some level I need it, or at least feel like I do. And I think maybe it all comes down to one underlying belief: that feelings signal something needed to be fixed, and I’m the one who has to fix things or they won’t get fixed.
My husband once called me “Annie Sullivan”, referring to the woman who first helped Helen Keller to communicate. At that moment I had ten of my fingers on one of my son’s and was showing him what he needed to feel in terms of pressure in order to operate the control for a toy racetrack that was frustrating him. Hubby had tried unsuccessfully for a while, but I had an inspiration and tried a different approach, and it worked. That’s happened a lot over the years. I’m not the only one who ever has an important insight, but the great majority of the time, when something about my enigmatic spectrum son isn’t working and everyone else, including him, is out of ideas, I’m the one who gets things moving in a positive direction. It’s my job. And the ability to do that gives me feel a sense of specialness and purpose. It’s become a big part of my identity.
I remember actually praying once for God to please provide whatever I needed and to change me into whoever I needed to be in order to help my spectrum son with all his difficulties. No conditions. Just give me the tools I need to do the job and I’ll spend the rest of my life doing it. And to at least some extent, that has happened. I’m constantly tuned in to my son and to any helpful instincts I might have about what is going on with him, and I am continually being brought into contact with the very people who can help me with whatever situation I happen to be facing at the moment. I am open to good ideas coming from absolutely any direction, so I recognize lots that come my way. I see more every day how my son and I are actually alike however differently our issues may sometimes manifest themselves, and that insight helps me to see what others often miss. I’m doing what I was put here to do, and I feel truly needed.
The downside of all this is that I feel very insecure when a problem arises that doesn’t have a clear remedy, or when I know I am not functioning at my best, because I feel like the pressure is on me to find a solution and to find it quick. Because that’s what I do. And because if I don’t do it soon, the problem may grow bigger, and the consequences may be more severe. The clock is ticking. Will I find the right button to press? What will happen next if I take too long? Why does no one else seem to see that any decision we make has further implications? However I choose to handle this, down what road will that decision take all of us, and what will we face along the way?
Because of my own spectrum issues, I find the unknown to be extremely disconcerting, and I tend to obsess over anything I feel has gone wrong in the past or might go wrong in the future. I have the impression that I feel pain out of proportion to what others seem to do over a given event or circumstance, maybe in part because I’m feeling it before, during, and after whatever actually happens. I carry the pain with me through time and can resurrect it full blown at a moment’s notice even after it appears to have faded. I’ve seen how things can go wrong in our own lives firsthand, and that doesn’t even begin to touch the impressions made on me by stories I’ve heard from others. So when someone tries to tell me it will all be fine if I just don’t worry about, I get very frustrated, because I know there’s a good chance that it REALLY WON’T. At least not according to any definition of fine that works for me.
So what all this leads back to is that frequently when my spectrum kid is out of sorts or having an issue – or even when another family member is significantly off balance ( because in my mind everything is connected, and because we all affect each other so much) – I initially become anxious. I overreact. I add stress to an already stressful situation. I sense a problem that needs fixing, when the truth is that somebody is just expressing a feeling or bumping up against a challenge, both of which they should be able to do without having to worry about how that impacts me. It’s not what happens all the time, but it happens a lot. We regroup and get a handle on things later, but an impression has already been made that grows deeper each time we end up there.
So figuring all this out doesn’t really fix this particular problem. But if I can see it and how it came to be, maybe I can start to recognize when it’s happening, instead of being caught completely off guard and wondering how I ended up there again. And maybe I can make a better choice in how I respond. At least I can know that I have a choice.
Bless all of you who are sharing your journeys, and thank you for allowing me to share parts of mine. It truly makes a difference.