xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: Independence and worry

Tuesday, May 28, 2013

Independence and worry

I'm a worrier; I worry. This is no secret to anybody who knows me well. I worry about my kids, I worry about my family, I worry about my friends. I lie awake nights thinking about all the people I love and the various issues they have and sometimes I wish so much that there was something I could do for them that I can't sleep. But all I can do, most of the time, is tell them that I love them and hope that they'll be okay.

With my kids, of course, it's a different story. I don't or can't just lie awake and hope for the best, I'm in charge of the things I worry about. Okay, there's nothing I can do about earthquakes, but for the most part I'm in charge. It's my responsibility to make sure they're prepared for what faces them and a lot of the time what I worry about is that I'm not doing a good enough job at that.

Lately I've been thinking (worrying) a lot about independence, in particular with Child 1. This is, of course, something all parents worry about for their children but for an autistic child the worry is much different. He's 11 now and ever since the Resource Specialist said the words "diploma track" at our last IEP meeting my mind has been consumed with "what happens when he gets older?" We're still struggling with basic hygiene right now, can I possibly imagine that one day he might live independently of me?

It has always been my instinct as a parent to not try to "micromanage" my kids' lives. I like to give them plenty of freedom to make their own decisions and find out for themselves what kind of people they are. Child 2 doesn't like sports, even though every single one of his friends does, so I'm not going to make him do sports. If he doesn't want to he doesn't have to; he'll find his own activities that he likes. But it's different with my autistic kid because his preferences are so limited. He doesn't just not want to do sports, he doesn't ever want to leave the house unless it's to go watch BART trains. He has no interest in making friends, he has no interest in any kind of group activity, he doesn't even have any interest in learning personal hygiene.

So, okay... so far I've been going along respecting his wishes because I'm not going to force him to do something he doesn't want to do, but now... the worry. What if I'm making a mistake? What if, by not insisting he, at least temporarily, leave his comfort zone to try new things, he'll never want to leave the house for any reason except to watch BART trains? Will he be an adult, living in my house and never leaving?

I read my friends' blog posts and Facebook updates, and I see all the therapies and social groups and activities that everybody's kids are doing, and my kid is doing none of those. And that's because he doesn't want to, but should that choice necessarily be his? When he was 3 he certainly didn't want to participate in our ABA-based home program, but he was 3 and nonverbal and I didn't give him a choice. As a result I'm 100% convinced that if it hadn't been for that program he wouldn't be the exceptionally smart, verbal, sweet child that he is today. He wouldn't have been able to make all of this progress without that program, the one I "forced" him into against his will.

So maybe now I'm just making a mistake. Maybe I need to insist that he participate more in the world, in order to prepare him for his future as an adult? Maybe by giving him too much personal freedom I'm actually doing him wrong??

I know it's so easy to say "you're doing the best you can and he'll find his own way" but... will he??? Nobody can predict the future, all we can do is prepare for it as best we can. I'm worried I'm not doing enough to prepare him for it.



Comments (19)

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I know exactly what you mean, mine is 21 now, and we still question whether we do enough to encourage his independence.
1 reply · active 617 weeks ago
Does he live with you?
That's the real question isn't it? I'm glad to know I'm not the only one who stays up staring into space worrying if everything I'm doing is completely wrong. Personally, I think you are doing an awesome job. He seems to be very content from what you say. I think a content child is a happy child.
Since you don't want advice, I'm going to just say "Hi!". You look good. I like your shirt.
1 reply · active 617 weeks ago
Oh thank you! I got it at Target.
I know what you mean Jill...we also wonder if we are pushing our guy out of the comfort zone enough. We have glimmers of hope followed by "what were we thinking!" moments.

I guess we just keep trying....and waking up at 3am wondering if they know how to buy new underwear at Wal-Mart.
1 reply · active 617 weeks ago
OMG EXACTLY
Well MY advice is... (KIDDING!). I hear ya. Hugs.
All I can say is Me, Too. I have no advice because I'm right there with you on the worrying & what-ifs. I wish I could peer into a crystal ball and tell you what you need to do. I wish I could do that for myself. But instead I'll be bumping along, hoping for the best.
It's the million dollar question, isn't it? If I really want to lie awake at night, I start wondering what kind of parent I would be if I had different kids. And then I don't know anything anymore. But hey, nice weather we're having, right?
KidsDrDave's avatar

KidsDrDave · 617 weeks ago

Weird, but I ask myself the exact same questions about my ostensibly neurotypical 18 year old who's about to go off to college far away if his shitty grades this semester don't screw up his plans. I dare not assume that I understand your worry, just want you to know that parenting is pretty damned universal.
Yep! You're telling it like it is. If we just had the answers we'd go all out and do whatever it takes. But there's so much effort, time, energy and money put into our decisions and they are at best just educated guesses.
I let my son's interests guide his independence. He liked comic books - so he was the one at the counter, interacting with the clerk. He loved to read, so he checked out his own books at the library and learned how to ask for the librarian's help.

Then he'd scoot out of there like the place was on fire and head to the security of the car. I'd thank the people he dealt with (even though he thanked them too). On the way home, we'd talk about how the interaction went, and I'd offer suggestions and praise.

Now, at almost 18, he's the one who picks up his prescriptions, he can buy groceries and order at a restaurant. He's lousy with money - I worry about him getting ripped off. This summer, the goal is to have him doing all of his laundry (he can load the washer and dryer now, but folding and putting away laundry are not in his wheelhouse).

He can operate a microwave, the toaster, and he's a whiz at pizza and french fries in the oven. He can scramble eggs and make a sandwich (and pack his lunch) - he will not starve.

I think if Child 1 gets just one friend, then he'll care more about the social aspects of his life (even hygiene).

I have to figure out a way for him to improve his telephone skills, as he is prone to ring off by blurting out "Ok, I'm done here", and hanging up. He has one more year of high school and he'll have to figure shit out, just like my NT kids.

I figure if we give them opportunities to try and succeed, they'll eventually get it...it will probably take a lot longer before true independence is within reach.
go frickin' figure.......I'm on the other end of worry......I'm worried that I'm pushing mine too much! I was just lying awake last night thinking that maybe while his friends were doing some scouting thing and we were skipping it so that he could have extra time to hike up the hill so he wouldn't have a melt down and then stopped so that I could change him because he had an accident that maybe it was all just too much.....I really wish that these kids.......any and all kids....came with an instruction manual! Too much vs. not enough...I think we are caught in a balancing act, and it is a struggle!
Some people just like to stay home, and that's cool. That said, it is nice to introduce kids to new things so they can find out what their passions are. I remember having to have emergency discussions with my daughter in basketball class when she found learning to dribble frustrating, but she ended up playing b'ball on a team for years.
Frango Mint's avatar

Frango Mint · 617 weeks ago

My son is younger than yours - he will start kindergarten in the fall. But I am already wondering about some of the same things. In particular I wonder how independent he will be as an adult, and whether he will want to live with us. We are about to put our house on the market and if we can sell it I am hoping we can find a new place that has room to build a separate apartment for him in the future, if he wants it.
I have the same worries about three of my boys especially because I am not always there now and I have no control over what they are doing and what they are exposed or not exposed to. I'm also not going to say that you are doing the best you can because I hate it when people tell me that. All I am going to say is that I'm with you on this and if you figure it out, please, clue me in because I'm lost and my map seems to be upside down and written in invisible ink.

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