It is what it is. Or better yet, "so it goes". Accepting what we cannot change. Letting the inevitable highs and lows, swirls and eddies flow over us and on. Learning to be at peace with what is.
The alternative: beating bloody fists against the unmovable wall of circumstance, and time and chance. Spending energy and anger grasping at illusions. Frustration.
I know my preferred path, obviously. I want to be like Billy Pilgrim, wise and impassive. Knowing when and how to be still and let it go. But every time I think I have come along down the path to acceptance and peace, I get bitch slapped by what is, and am left blinking back tears in the aftermath. C'mon E, you know this already. You know that this is the way it is, what's with all the fruitless angst?
Yesterday the DH and I accompanied both sons on a field trip to the museum, and "what is" caught in my throat and made my heart heavy, just like it was something new and unexpected. I was surprised by my own sadness. I guess it is still there, under the top layers of acceptance, and educating myself, and advocating, and moving on with hope and possibility into the future...still there, a seed of denial, a stubborn refusal, a petulant "this just isn't fair!".
-my son pale as paper, deep purple smudges under his eyes, as frail and strange and quiet as an entirely different species landed amongst the robust, boisterous other kids
-he is almost beside himself with anxiety at the noise, and being out of his routine. He looks as if he's being led to the guillotine, fear and tension etched in every feature. Other parents keep asking me if he is OK.
-he refuses any help. A quiet break? Noise blocking headphones? No. He is painfully sensitive to the idea of being different, and he can't see past the overwhelming now that he is immersed in, forward to the relief these items might bring, so he refuses. To try to force the matter will break the thin string that he is hanging from. I desperately want to help him, but there is nothing he will let me do for him. I can't even hug him, or comfort him with words, the extra sensory input of touch or verbal will just make his overload worse. He is utterly alone in this.
-I follow him, about 10 paces behind. Making sure he is safe, intervening if he gets entangled with another kid, making suggestions when I think he can handle it, about what he could do or shouldn't do. It is unbelievably crowded. He paces around and around the various exhibits. Every once in awhile he slows down and engages with something, and seems to relax a bit, and my hope rises that the activity will be able to distract him into a bit of calm, but seconds later the relentless pacing begins again.
-the other kids ignore him. Even the ones that are his friends (should I put "friends" in quotation marks? I'm not sure). He has no one to play with at recess anymore. I can't blame the other kids, he is very hard to engage with, and right now impossible. One of the other parents, I want to punch in the face. She keeps giving him dirty looks. Sometimes it would be a relief to be the type of person who does those kind of things. "Hey, lady?" *POW* Right in the kisser. "He's doing the best he can, you smug, judgmental asshole. Mind your own effing business."
-I find myself welling with tears in the dark of the planetarium. His "best friend" has just made an effort to avoid sitting by him. Oh, my son, how hard are these next few years going to be for you?
But I am used to this. All of this. Most days, I can even find the good in it all, the wellspring of hope, the pride in all the beneficial differences and in his incredible strength and tenacity, and I find humour...buckets and gobs of it, in all the awkward, wonderful moments that make up our days, and I figure I am pretty well along my way on that road to acceptance. As L said,"It (Asperger's) is not a disease. It is not an illness, and it is not as bad as some people might think." We get on with things quite nicely, thank you very much. Yesterday, however, the unfairness of it knotted into my chest and pulled sharply.
I wish things were easier for him. I wish, I wish, I wish.
After the field trip, I had a long meeting with my other sons' teacher. Yeah. That was fun too. Problems on top of problems, on top of the barriers between him and being happy and doing well at school. I will keep chipping away at those barriers. I won't ever give up, but yesterday it felt like I was working away with a toothpick...little bit by little tiny bit. There were about 8 things on the agenda for the meeting, I came away hoping that we have come to a consensus on how to improve things on one of them. Fingers crossed. This is a hard slog, not a clear path. That is just the way it is. Expect it. Keep moving forward through it.
To end on a positive note, one of those moments of humour and joy:
E having high social anxiety and a tenuous grasp on the concept of what is embarrassing and what isn't, will often refuse to talk, smile, or laugh in public and will rebuff any social interaction but the most basic that comes from us. Most 10 year old boys would recoil at being called Lovie-Muffin in front of their friends, but E will recoil at being asked how his day was, as if it crosses the same boundary of mortification, because he just can't sort out the difference. And so, while he is a very affectionate and fun kid at home, he is stiff and chilly to the extreme when we are out in the world. We had a talk about this before the field trip, and noticed that he was much more receptive yesterday. In the evening he explained that this was because of 2 things, #1 the talk, and #2 he had heard one of his friend's commenting to the other about how lucky E was to have a dad "like that" (as in, a dad who is funny and fun, engaged with his kids and maybe even...shock, gasp...a wee little bit cool), and the friend heartily agreed. E said that made him feel better about his parents not being soooooOOooooo embarrassing.
And so it goes.