6/21/2012

Not What I was Expecting...

I had (don't ask me why) a mental image of what this summer would be like. Has it been what I thought it would be? No, of course not; it never is.

This has been a year of changes--I know, it sounds stupid to say that when every year is full of changes, but you have to understand that for a long time, because Bobby filled all of my days, as I worked with him one--on-one, year after year, that it felt like we lived in a time warp, or our own little bubble. Yes, we moved every three years or so to a new army post, so there were changes outside the bubble, but with the two of us, there weren't a lot of changes. We worked on the same basic skills for ten years--working out of the same workbooks, bought and rebought. Progress was minimal when it came to academics and Bobby's ability to understand the world, and so I got used to tiny changes stretched out over years, not the giant leaps of growth that my girlies make.

Bobby's life skills have grown over the years, but in fundamental ways we remain in the bubble, and it can be difficult, especially when things outside the bubble change in dramatic ways, to remember that Bobby, although a man and a sweet, wonderful, funny one at that, has challenges that he has yet to surmount. It is too easy to look at him with his scruffy mustache and assume that he can handle anything thrown at him, and then of course, end up frustrated because the truth is that he can't (who can?). He tries his best, he's always game, but then we end up both just irritated at each other and the situation. It's unfair to him. It's difficult to find that precarious balance where we push for the building of new skills without pushing too much, too far, allowing him to experience as much independence as possible while still making sure he's an integral part of the buzz of family life and the work it takes to keep a home functioning. I think we do well most of the time; he loves his volunteer work at Meals on Wheel. He never complains about being asked to do something, although it may not get done. He smiles a lot, laughs a big, boisterous laugh when he knows something is funny, even if he's not quite sure what makes it funny. He's opinionated, stubborn and gets outraged over injustices (so the news isn't on a lot here). He has a sweet, honest, open soul. He's as good a person as you will ever meet. So it makes it all the harder when we have our occasional hiccup, and I get angry or hurt over something that he says or does, when he meant no harm. And then I think of the wider world and will people give him the benefit of the doubt, stop and consider whether he understood the connotation of what he was saying, ask him for clarification, or if they'll jump to conclusions and that will be the end of that?

I watch him interact with the kitchen staff at MoW when I drop him off and pick him up, and in the year he's been there, he's loosened up, become comfortable joking with them, laughing, talking. He's at home there, comfortable in his skin, and it's so damned good to see that each day my eyes spill over with gratitude, you know? He comes out smiling, talking quietly to himself, his eyes darting up to look at me as he makes his way to the car and then he's looking down again, talking to himself as he gets in. Not once, not a single solitary time, has he ever been upset when leaving--they've all been good days for him, and that's such a blessing, such a gift, that I want to make sure that he feels the same way about home--I don't want to lock horns with him. I don't want to discourage him. And again, I think that, other than the occasional issue, I don't, but those instances where we ask for more--I hate that--those times where I am hurt or angered by his words when no harm was meant--I linger over those, feeling guilt for longer than is useful or reasonable. I want to hold him accountable only for those things he meant, not the unintended miscommunication, and that means taking time to look at a situation closely and carefully.

So much is not what I expected...we've eased back on some things at home--Bobby's time shouldn't be structured by others all the time. We started working with Lily, to build her life skills at home, and whereas Bobby still struggles with some tasks, Lily, bless her, took to them and learned them so fast that she's now doing the laundry, vacuuming, putting up her clothes, helping her sister put up hers. She's lightened my load and Bobby's by picking up some of these household chores. Where it took years of work (and still requires reminders each time) to get Bobby where he could do these things, Lily learned in the space of a week. We're working with Rosie to build her life skills, too.

Learning how to navigate the different skill sets, strengths, challenges of all three of my children is always interesting. Yes, they are all on the spectrum, but that doesn't mean they share the same issues or the same strengths. I am constantly challenged to keep up with each of them and recognize that change comes in its own time and its own way with each of them.

So, no this summer is definitely not what I was expecting for several reasons, but it's filled with treasures--watching each of my children find their way, find ways to maximize their strengths, watching what can happen when I step back and give them the opportunity to try new things. It's also been challenging and frustrating, at times, and we're only one month into the summer "break"; I can only imagine at the next two months and what growth they will bring. I'm certain that whatever happens, it won't be what I was expecting, though.

2 comments:

farmwifetwo said...

Once upon a time.... not that long ago I'm not that old :) A SEAL gave some of us an important piece of advice about "best laid plans"...

Thine husband should know the saying....

I no longer get wound out about coulda, woulda, shoulda's. 1. They've proven the therapists, professionals etc wrong. 2. Many, many, many hours riding a lawn mower around a farm all summer is an amazing way to sort out one's thoughts.

But, maybe one day someone will tell me how a severely autistic little boy puts his clothes in the laundry without being nagged and the "passing for normal" one can't.

Just saying....

Jean said...

Bobby sounds gorgeous (as do your gals).
It's nuts how it's easier to hold onto the painful comments than all the lovely things he has no doubt said to you over the years.
I'm in awe at him working (and loving!) MoW. It really gives me hope that maybe one day my little man will be capable of the same.
I also say HAH!to the summer "break"
XXX