When the boy was diagnosed seven years ago, I used to offer up to everyone as much as I could about him, autism, and us. This vein of thought, of course, led to this blog (along with what the marketing team at blog.com calls, the ‘itch to write). I didn’t lead conversations with, “let me tell you about our autistic son.” But I didn’t hold back either.
It isn’t that I hold back or have changed my tune about the sharing of info, in fact, I suspect and hope, as all of us make this journey and have more experience, its just not that defining a factor in conversation.
If you get to know me, over time, you are just going to know. Its as much a part of me as my love handles, dashing looks, witty personality, 26-inch inseam, moxie and machismo. I find that as I look over my blog postings the last year or so, they are becoming less emotional. I don’t feel the need to spill out over the rim of the cup with words expressing my frustrations or misfortunes as I used to. Its not that it is smooth sailing in front of us by any sense, it is just that I’ve come to expect the choppy waters.
But now that I’ve been in the new town for the better part of nine months (making that turn into a year now), and we’ve gotten to know a few folks (me both personally and professionally), and I’ve gotten the almost whisper question by a handful – they ask so seriously and quietly, as if the question will be seen as bad manners or I’m going to get up out of my chair and get my keys and drive off “What’s it like?”
Hmmm, an excellent question that can’t be answered simply, or without a nice glass of Pinot Grigio or Cabernet Franc! But it can be written, I suspect, more easily.
What’s it like?
Liberating, because as I’ve said, I know exactly what my last thoughts will be on my deathbed, “Is he cared for, and did we give him a good life?” Such epiphanies will set you on a certain path to make certain choices. As we look back at the short time we were here, I’ll look back at only few things, overwhelmingly.
It’s like Super Glue for me. Once you get that special needs diagnosis with a child, it is stuck to you. It isn’t going away. I suspect this is the same realization families fighting cancer and other diseases and afflictions have. It is here, with you, and you either deal with it, with you when you look left or right or you try to pull it off, and it doesn’t go away.
Humbling. I am no way in control or master of my universe. His bad days and his ticks, like chewing through a tee shirt or squealing at the top of his lungs, TV talk, the whole enchilada, reminds me of the randomness of life. It is human nature to try to control our environment, and some of us do it better than others, but to know that at the end of the day, ‘this’ has happened, well, keeps you grounded. The highs aren’t too high anymore and the lows aren’t too low.
Lonely. God, at times is it lonely. Watch some other boys play soccer and you ache to see Demetrius do the same and interact in a certain way with his peers, to experience what others are experiencing…and you just feel very alone. Or when he just wants to turn off and decompress and turns off from you. The TV talk can be deafening. This is less an issue each passing day, but it is still there.
Tiring. The cycle of maturation trickles rather than flows. Here’s the explanation of what I mean: remember when you took your toddler-five year old to the park. You had to watch everything, you couldn’t not pay attention. High alert at all times. As your child matures much of this just naturally ‘dissipates’ through lessons and swats on the butt. Look both ways when crossing the street, don’t wander off following whatever catches your eye. Ask if you can leave one playground to go over to another (some kids catch on quicker than others). With Demetrius, we still have to hover like over anxious type A new parents at the city park for the first time. Thus, why I can legitimately say that I’ve never been more mentally tired than when we came back from Disney World (that and the weather and the fact that I was the family pack mule). Will we ever outgrow this? I don’t know. But I suspect we’ll be too old to go play at the park before we actually do.
Lower bullshit tolerance. I think this one is pretty much self-evident. Get over your &#(@&@ self. Once you have kids it stops being about you any way. Add the special needs issues all over it and you’ve got to tell yourself at times, “His or her worries are just as important to him/her as yours are to you in regards to Demetrius.” That’s the first free pass. After that, solve your problem and quit bitching about it.
Living in the moment. As much as tiring is an issue, you do live much more in the moment. Note my posting on diving into the pool from the high dive last week. Look what he did. Now just don’t do it again or you are going to give your mother a heart attack, boy. See also, humbling above. You gotta plan for some things, and you gotta let other things (mostly things tied to your personal ego), go.
Rereading this, I can accurately say it hasn’t improved my patience or tolerance for stupid mistakes. But hey, even if I can identify a few things insightfully, I’m still human and have character flaws.
Maybe this is just a realization at 40 I am who I am, but maybe this too, is something I can attribute to autism. It’s made me better in a lot ways. Or, at least, made me aware of a few things.