"Whenever I see your smiling face, I have to smile myself... because I love you..." ~James Taylor
Yes, I know it was last week. Don't worry, I sent everyone where I was supposed to send them yesterday. But while I was telling Ryan that yes, it was a school day, and reminding him how we act at school, both after a bit of a meltdown about having to go, he about shocked my socks off.
As he waited for me to get his toothbrush ready, he said very clearly, "Mommy is confused."
Once I got through laughing internally, I told him that no, I'm not confused. Today is Monday, and most Mondays we will go to school.
He has a thing for time. No, it's not some superhuman power, and it's not the one thing he's into. And no, he can't tell you what time it is if there are no clocks around. It's not a savant type ability, but it is definitely a hallmark of being Ryan. Maybe he's just really in tune with his inner clock. But more likely, I think it's a manifestation of an addiction to routine.
We first discovered it two years ago when we were at my Mom's house in eastern Oklahoma. We left school to see his then therapist, Ms. S. We were away for a week, and had been gone since the previous Friday. He'd been out of routine for days when, on that Thursday, he came to the bathroom where I was attempting to do something to my hair and reminded me that it was time to see Ms. S.
Quickly, and in the usual know-it-all mommy style, I began to tell him no, that it wasn't time, and why. But then I glanced at the clock.
And thought about what day it was.
He was right!
The next year, in kindergarten, he was quite the swing addict. LOVED to swing. He got to the point where he would melt down over not getting a swing on the playground. We tried to figure ways around this, and even the other kindergarten teachers tried to help make sure he got a swing without being unfair, of course.
Then one day, they noticed that he would say "11:34" and something around it that led them to realize that he HAD to walk under the clock in the hall at 11:34. But that would mean he was at the end of the line from lunch to the playground, which meant no swing. Being the wonderful people they are, they figured a way around all that.
There are all these cool things that tell us that he has thoughts, opinions, and preferences, but so few times do they fit in as something socially acceptable. The swing addiction plus the 11:34 thing brought forth a new stimmy phrase at home. "You love to take swings away."
I wish I had a nickel for every time I had to explain that one to him, or had to tell Richie it wasn't okay to repeat. And why.
Often I get hung up between smoothing the road for him and teaching him the ways of the rest of us. He has to learn. The only way he will learn is if he's taught. But how do we teach this?
How do you teach someone to smile back when someone else smiles?
How do you teach someone to say "Hi" when someone else says it when they do not understand that concept?
And how in the world do you deal with what could happen on the other end of that conversation?
I've attempted to cover over his refusal to make eye contact or say hello in return so many times. Each time, it seems a bit more trite. I hate to say it, but I dread the day someone is rude to him or myself because of this explanation, or just his seeming rudeness. And that's all it is. Rudeness is actually not a concept he understands at this point. And if it's not a concept you understand, isn't rudeness not possible? It's only perceived. And if it is perceived, what am I to do?
Educate gently when appropriate. Following that, whatever I've done is done, and I've done my best and so has Ryan. I cannot assume responsibility for anyone else's reactions or actions. I should apologize when appropriate, and honestly, "I'm so sorry... he doesn't mean to be rude" are the first things that pour from my frantic attempt at explanation.
But Ryan truly doesn't understand this concept. For him, smiling and saying hello is somewhat like waving when you're driving. You don't wave at everyone. On the chance that you do spy a familiar, friendly face, in an expression of acknowledgement and maybe joy, you wave and smile. As a neurotypical person, we've learned to, in certain situations, say hello at a certain proximity when walking about among others.
The heart behind what he didn't say is not likely a spirit of anger or malice. Rather, his seeming oversight is a part of his makeup. We have done our best to teach him in several different ways about social situations. We prompt him to speak when spoken to. But very seldom is any greeting or degreeting spoken, and if it is, it's delivered to the ceiling tiles or the wall.
Mostly. The flipside... the small percentage of the people he meets that make it into his world... will see the most beautiful smile, and the sparkliest, deep blue eyes on the face of the earth. Once you're in Ryan's world, you're hooked. It's impossible to see that face without smiling.
The best part of it is realizing that he doesn't wave. He doesn't usually say hello. But when he's happy to see you, you will know.
Every afternoon, he smiles and flaps his hands (his stim behavior) when he sees me. Mostly I wave at him, but sometimes I stim right back.
When Ryan sees someone he loves and hasn't seen in a long time, he will often smile, then look to the ground and cover his face with his hands. Eye contact is hard when you're really excited, for some reason. Maybe the pictures of that person he has in his memory have to line up with the one before him. Maybe someday he'll be able to tell me.
Maybe someday I won't be so preoccupied with us all swimming with the stream.
Maybe the best and most effective acceptance of Ryan is that of those who stand in the gap. For the people who know him best are the most important to him, and those who are the most important to him will know him best. So often it seems that his only chance is in how well his mother explains him. But even my best attempts at shoving Niagara Falls through a drinking straw come up short. To know this kid, to understand him, you have to spend time with him. Armed with my explanation and even a knowledge of autism basics (those two words would be hilarious together if the ridiculousness wasn't so frustrating), you're still likely to run into snags.
Then, when those snags are explained to me, it's almost always a facepalm. Something completely simple I've completely left out. And I feel terrible. I could have said that one thing that would have made you aware of that one thing, and I didn't.
As hard as I try to explain Ryan to those who need to know (therapists, teachers, aids, doctors, the list goes on), as practiced as I am in it, no explanation of mine can put in a bottle... or a blog... or a dissertation... who Ryan is. No psychologist's report can explain every nuance of his life and personality. I have a file drawer full of opinions, rules, modifications, and reports, and not one of them completely explains him. Not one is a handbook for our life with Ryan.
God knows the hairs on Ryan's head. He knows Ryan far better than I ever will, and he knows me the same. I used to think that I could rest only knowing I'd done my best. But if that is true, then how do I rest on the days that I have not done my best? Those are the days I need rest, reassurance, and peace the very most. They are the days when I need a confidence refill and, well... a hug.
This is why my reassurance and hope can only come in the grace and mercy of Christ. Even on my best day I cannot smooth all of Ryan's paths. Honestly, most of the time even Ryan's and my best together aren't enough for the world's general social and societal standards. Too noisy, too wiggly, too quiet, too unpredictable... too high-maintenance.
But I have spent more time with Ryan than anyone, and I can tell you in all honesty that there isn't a sweeter soul on the earth. He has so much to offer. Anyone who has taken the time to get to know Ryan would whole-heartedly agree. Even the therapists who have been screamed at and had to endure meltdowns to coerce him to put a cherry to his lips or just ask for something instead of yelling have all been crazy about him.
He has worked so hard for every little thing. Every hello, every request for even the simplest thing is something he's worked so hard for. I've watched the same skills that we all slave for in Ryan seemingly magically appear in his brother and sister. I see them blow by him in speech and language development, and nearly every other little thing they try.
And yet, they adore him.
Thanks be to God for love that covers over differences, yet reveals beauty and similarity.
Thanks be to God for the love of Christ.