11/05/2011

Strides Forward and Steps Backward: It's All Uncharted Waters


I've been sharing the good, the difficult, the worrisome about Bobby's journey to manhood for nearly three years now. He's made huge strides forward in independence, in moving out into the world by volunteering 28 hours a week in the kitchen at Meals on Wheels and a couple hours on Fridays at the local SPCA. He's happy with what he's doing and by all accounts helpful.


He cooks many of our meals, at home as well, and other than occasional missteps, he does very well. He never walks away from the stove and stays focused on what he's doing. Sure, he occasionally tries to spice it up so much that my tongue falls out, but overall, he is highly competent in the kitchen.

So it flabbergasts me that a week ago, while he was home for a couple hours alone, he chose to microwave his lunch, input numbers into the microwave that were far greater than needed, walked away from it, and came dangerously close to starting a fire--the dish melted in the microwave, the house filled with smoke, and even now, more than a week later, the smell of that burned/melted/utterly destroyed meal lingers in my house. We've got to replace the microwave, and I find myself questioning leaving him unattended at home at all if he can so easily get lost that he doesn't notice the problem until it's nearly too late.

It feels both like we've taken a huge step backwards and that we've been incredibly lucky nothing like this has happened before.

And yet, this morning, he donned a chef's jacket Kathleen had sent him and decided to make omelets, a dish he and his grandma had discussed. It was a wonderful meal (although more scrambled than omelet) and he was incredibly proud of himself.

The reality is that we are, each and every day, in uncharted waters. Somedays, he is incredibly focused and does very well. Other days, the fog he must navigate through is almost visible to us. Throughout all of it, I believe he tries to do the best he can and that acceptance of the variability of his ability to function is key to making the best possible life for him and us. We must be reasonable in our expectations while working to help him exceed those expectations in a way that keeps his psyche intact and whole.

I think that we stumble through each day together, all of us trying our best to do right by each other, and that when we slip, we work hard to make it right, but our life is far from perfect and some days are hard. Not just for me or Rick, or my parents, in our interactions with Bobby and trying to assess whether it's a good day or not for him, or whether we're asking too much, but also for Bobby, who tries to make sense of the world around him and the kaleidoscope of people and voices and demands for his attention.

It cannot be easy for him, and I cannot allow my hopes, wishes, or fears to in any way make it harder for him. So we're pulling back on time spent alone and insisting he stay with his grandparents those afternoons I can't be home, which he seems to be more than okay with. We're requiring him to pay for a new microwave, as well, but we're not yelling, we're not punishing. We're hopefully not overreacting. We're just navigating those uncharted waters together the best we can and hoping we'll reach the other side intact (and not smelling of smoke).

10 comments:

melbo said...

Dang, you've done it again ... this is so spot on with what I've been thinking myself lately.

You are so right - on some days, you are just blown away by how well they're doing then something reminds you that you can never let down your guard.

I can only imagine how anxious it must make you now that Bobby is heading out into the world. It's never easy for parents to watch the kids get ready to fly the coop but in our case, there is that whole OTHER level to deal with.

Thinking of you.

KWombles said...

Thank you, melbo. I appreciate it.

farmwifetwo said...

Which is why IMO this http://nostereotypeshere.blogspot.com/2011/11/my-asday.html is NOT autism. IMO as posted here http://theautisticme.blogspot.com/2011/11/autistics-speaking-day.html is a regular life. It has it's ups, it's downs, but it is fully independant. Shall I tell you how I charted my days into hours to survive Engineering???

What is autistic is the ups and downs of Bobby and my Russell who I hope will become as independant as Bobby one day. We keep working at it. The amazing not only in what they can do, but what trips them up. They can do step A and D with no problem but somehow miss B and C in the middle and we make the mistake that they understand B and C due to their profiency in so many other areas.

That... is autism... a disability that requires supervision at all times. Not a "way of being" or "thinking" or any other "ing".

Thankfully, except for a dead microwave he wasn't hurt. Don't worry... my inlaws (when my FIL was alive and my MIL just did a couple of weeks ago) are both known to leave their kettle on the burner and walk out the door and it boils dry... It happens to all of us. My OCD makes me remove everything from the stove before I can leave.

Russ wants to go outside... sigh... I'm still hobbling and feeding Sammy (2 week old calf) didn't help any at noon. Dh had to take a load of beans to the co-op. Hope your foot is better.

Dixie Sargent Redmond said...

You said, "I think that we stumble through each day together, all of us trying our best to do right by each other, and that when we slip, we work hard to make it right, but our life is far from perfect and some days are hard."

Bobby does better than I do in the kitchen! But I understand the feeling of going forward and backward.

Dixie

Lisa Jo Rudy said...

I think every parent probably copes with the question of "how much independence is too much." the difference, in part, is that with NT kids we have a path to follow, and an idea about how much really IS too much at any given age.

With our ASD kids, it is - as you say - uncharted waters. How far CAN Bobby go? The answer is "no one knows, least of all Bobby, but if you stand in the way of his independence you'll almost certainly never find out."

So do you allow the fires to happen?? Yipes. I guess the limits need to revolve around physical and emotional safety...

So tricky, tho. Tom, for instance, understands when to call 911 and knows how to do it. But WOULD he do it if he were alone with a fire starting in the kitchen? I don't know, and don't care to find out through experience!

Lisa

aspergirlmaybe said...

Wow, I'm so glad only the microwave was hurt! Such a tough balance to figure out - you are an inspiration to me to keep pushing my son towards as much independence as he can take. I have to admit I've been overprotective in the past and probably will be again, but I'm definitely working on it.

AutismWonderland said...

One of the things I enjoy most about your posts is that it gives me insight of what's to come. My son is only 5, so we still have some time :)

But I love that you are giving him independence and I love that he's embracing it.

And I think you are being fair about the microwave.

chavisory said...

Yeah, I think you're being fair about the microwave.

But still...

It isn't me (autistic) who tends to leave the knobs on the stove not all the way off, so that I've come home late a couple times to the smell of the apartment filling with gas. It's my roommate (non-autistic).

It wasn't my grandfather (probably autistic) who once put a gold-rimmed plate in the microwave and caused a fireworks show; it was my grandmother (non-autistic) who thought "oh, it's not that much metal, it'll probably be alright."

I did once set my oven on fire trying to roast kebabs on foil instead of over a broiler pan as the recipe instructed. But I'm not the one who once hammered a nail through a can of spray paint and was lucky not to lose an eye (that was my brother--non-autistic).

My point isn't that your microwave incident isn't serious, or an important signpost...it's that we're all individuals, and this really, really, could've happened to anyone at all with a simple slip of the finger and not a major developmental lapse. Do you know *how* it happened? Does Bobby?

"That... is autism... a disability that requires supervision at all times."

farmwifetwo, I know it puts a dent in your worldview that some of us exist, autistic and independent. Aside from that, do you even have a sense of how dangerous this extremism is to real autistic people? To your own children? What kind of expectations does it set for them that if they have autism, they may never be free of supervision? This is woo and misinformation of the highest order.

Dixie Sargent Redmond said...

I had a grease fire and did the stupidest thing ever by carrying the pan outside while my son watched. Hello! I couldn't remember what to do for a grease fire and was afraid to do the wrong thing. (Pan lid, Dixie, pan lid on pot!)

In planning life, the fulcrum between safety and independence seems to be a moving one from day to day. It's not always an easy call.

D. S. Walker said...

I think you are doing an excellent job with Bobby and being fair about the microwave. This may be a life lesson that helps him to become more independent in the long run, but I know it must have been scary at the time.