I wrote this post last spring but never got around to publishing it. So much has changed since then, and we have continued to see leaps and bounds in my son’s development. But the core message in this post remains important to me.
Lately, something in my gut has been telling me that, after two and a half years on our autism journey, we might have been approaching certain things all wrong.
Yesterday was a rough morning. It was Easter Sunday and the children were both not exactly working with me at trying to get out the door. At one point, my son was having a complete meltdown because he refused, and I mean REFUSED to wear a white button down shirt to the Easter brunch we were attending. I was frustrated. We had talked about this before. He had agreed that special occassions call for special shirts. But on that given morning, he just happened to be more irritated than usual. Not wanting to wear certain clothing isn’t necessarily unusual behavior for a toddler, but with a child on the spectrum, intolerance to transitions and different places and things can be every more intense. And I was tired.
I held my ground, letting him cry it out while I got ready for Easter brunch. I was adamant he would wear it, that I was teaching him how to be flexible and try new things. When you’re the parent of a child on the spectrum, you’re taught to always keep your child as flexible as possible. Well, you know what? That particular morning, his body just couldn’t take that collared shirt. Who knows why his sensitivities were particularly bad that morning. That is the million dollar question. But did I make him feel invisible by not acknowledging his feelings? Could I have approached it differently? I know what the therapists say, and then I know what my gut says about respecting my son. I need to meld the two together in a responsible way
I know when I was young I was painfully shy. It was so hard to be told to say hello to an adult when I just couldn’t bring myself to. I think there are times I cringe at my son’s behavior because I think – hey, didn’t we tackle this already? But life is not so black and white, and sensory issues come and go. So do obsessions for him. This is something for me to accept. Am I supposed to be teaching him that it’s wrong to feel the way he feels? Well no. Sure, I’m supposed to be teaching him to try new things and keep exploring his world, but I’m also supposed to let him know that it’s ok for him to to be who he is. It’s important to remember that little girl that I was, who couldn’t say hello. Now, no one can shut me up, so it’s obvious I’ve changed quite a bit. While my son may or may not change in the future, the point is, he doesn’t necessarily need to.
Self-esteem is important in the life of any child, but especially one with disabilities. Yes, I am here to help my son heal from any physical ailments that come from a low-functioning immune system and to make him as comfortable as possible. That’s where diet and homeopathy come into play. But I am also here to respect that there are certain ways his brain is wired, and that his wiring may always be different than others who are considered “neurotypical”.
My main goal in all of this is – how can we come out of all of this with my son’s self-esteem and confidence intact? I want him to always know that he is loved and respected simply as he is. This can be hard to achieve when your child is in therapy much of the day. The focus is often on all his deficiencies, though the therapists certainly do a fabulous job of making it as play-centered as possible. My son has had success because of these therapy tactics, in that they have helped him open up neural pathways and make new connections. He would not have been able to without it. But as he grows and evolves, and as we as his parents do too, it’s important to make changes in our approach. I feel grateful that I have the means to currently keep him in a school and therapy environment where others celebrate my son. Not everyone is so lucky. What else can I do moving forward?
The first step, for me, is to focus less on rote learning and more on theory of mind. Expose him to the idea that there are many different ways of thinking and many different ways to responds to things. I also want him to know that I understand how he might not always want to look at people when talking, and it’s ok that this is hard for him, especially when he is trying to form words at the same time. That, yes, I get how loud and overwhelming it can be at parties or in bigger social situations. I want him to know that I get it. And that I will do my best, primarily, to teach him the tools that allow him to ask for help when he needs it. Because the disability may not go away, but his coping skills can certainly grow to a point where he will know he has a community around him to help him navigate.
I’d like to operate from this viewpoint: that my son does need to fit in just so he looks indistinguishable from his peers. He needs to learn the skills to fit into certain circumstances so that he can use these skills to get what he needs out life. So yes, he does sometimes need to learn to tolerate lights and sounds that might annoy him. He does need to learn to speak to and communicate with others so that he can connect with them. We give him these tools and then it is also up to us to let him decide in the future when and how he wants to use them. Not for our happiness but for his.
Is it a patience game? For sure. The best we can do for our children is to work very hard every day on keeping their innate beings intact, happy, and adjusted.
I honestly don’t think I would ever take away this experience. I would take away and all of my son’s suffering for sure, but the beauty of how different we all are, how wonderful it’s been to see even the smallest milestones achieved, that has just made life more amazing than ever before.
As my child grows, changes, and learns, so I will too. None of us have the absolute answers, but I’m not sure we need them.
My son’s latest creation. He says it’s a road that goes many different ways.