Saturday, June 12, 2010

A matter of perspective

If you've been reading this blog for a while, then you probably have a sense of the extraordinary progress that Bud has made in recent years. If you know him in real life, then you are certainly aware of it. The progress is undoubtedly a good thing.

And yet, I find myself thinking lately about a post I wrote several years ago about the down-side of being a "high functioning" child, as I find myself responding to Bud with higher expectations, lower levels of patience, and increasing frustration with his behavior.

I'm reminding myself that I need to take a step back and remember what's going on here.

It's one of the dangers, I think, of having a child with a "hidden" disability. The more he "looks" like other children on the surface, the quicker I am to blame him for troubling behavior, instead of recognizing that it is merely another manifestation of his disability.

I think about it this way: If Bud were blind, I doubt I would hear myself saying "You have a cane. We have been over this a million times. Would you PLEASE stop bumping into things?" I'm virtually certain I would not blurt out in frustration "CAN YOU JUST WATCH WHERE YOU'RE GOING?"

I have a hunch that I would be quicker to remember that visual impairment is the very definition of blindness, and that the behaviors that stem from that are merely signs that there is more progress to be made.

Why, then, can it be so difficult to remember that most of Bud's troubling behavior stems from the core deficits that are the hallmark of an autism diagnosis:

Language impairment;

Difficulty with appropriate social interaction;

Restrictive interests and repetitive behaviors.

When I look at the behaviors that make me want to scream - that do, in fact, sometimes make me scream - I can see how neatly they fit into these three little boxes.

Bud has made - and continues to make - extraordinary progress. His skills compound. His abilities soar. And he is still autistic. The core deficits of autism will continue to manifest in new ways for him, signalling our need to shift approaches and rethink assumptions.

It is MY job to watch where we're going.


farmwifetwo said...

I have that problem with my eldest. I forget that this "normal" child, still has NLD. I quite often find it more frustrating than dealing with the more prominant issues with my non-verbal autistic son.

Apples and Autobots said...

That is sooooo true! I experience some of the same frustrations with my son who has Asperger's.

Lisa said...

It's like, oh great THAT problem is fixed now, I can relax. All done. Great progress.

But then the next set of issues pop up. Sigh. And they will.

Dreamer is doing so well, I thought he could plan his own birthday party. He forgot to keep track of who he'd invited...

xine said...

Oooh, I have fallen into that trap too many times with the kids I work with! After they've learned and maintained a skill for a while, it is easy to forget that they sometimes have bad days and forget, and that it isn't appropriate for me to think something like "seriously?! You haven't had an accident in months, what gives?!" when I should be thinking "How awesome, I can't believe he hasn't had an accident in months! He's doing such a good job. Today he must have been so excited about what we were doing that he forgot to use the restroom." Or something like that.

Christa said...

Shannon Rosa just asked me to write a guest post for the Thinking Person's Guide to Autism about the mixed bag that goes with having a child that "passes."

I think you just wrote it for me. :)

Can I link to you and quote this post in mine?

C. S. Wyatt said...

People forget the bad days, the non-verbal days, the days I simply need a break to recharge. My wife certainly forgets and will say, "You already told me X several times!" She gets frustrated much faster if I have been okay for a long time and then have an unexpected bad day.

That's human. The shift from speaking in public or teaching to rocking without speaking is a lot to take, I realize. But the little "changes" on bad days are even harder to recognize and tolerate.

I always try to remind myself that people forget I'm constantly dealing with sensory overload, cognitive challenges, and an uncooperative motor system. I must pause and remind some people, carefully and politely, to be patient with me and I'll be patient with them.

Melissa (Betty and Boo's Mommy) said...

Oh my goodness ... yes. Absolutely needed to read this today, if only to remind myself of this and that other people "get it." As always, thank you.

Fairlington Blade said...

I remember coming to Secondo's most recent meeting with Dr. Dave. Keen was doing the appointment and I showed up late to pick up the kiddos and take them out to a special meal. [Note to anyone in the Washington, DC, area--Firefly and Eventide rock! And that includes families with special needs kids.]

The theme of the meeting was that it's OK to be mad at your special needs child. We're great parents etc etc etc and there's nothing wrong with being frustrated. Several days later, I saw Keen walking downhill with a squalling Secondo on her shoulder. They'd been out tricycling and it was time go home. Primo was cool with it, Secondo took a stand. Bad idea, kid. I took Secondo upstairs to cool off and made Keen a G&T.


MOM-NOS said...

Christa, link away! I'm glad it was helpful, and I look forward to reading your post.

C.S. Wyatt, thanks for your perspective. It's really valuable to me.

Elisa said...

I feel ya! Thanks for sharing what a lot of us feel.

KAL said...

Wow, I could almost have written this post word for word, but about Sam. I forget all the time!

ED said...

So often, I click and find your sage postings so timely, as it was again. Right when my son and I have both hit that frustrating semblance of normality and so I must start to TELL myself and I now begin to TELL others the best I can, that we are so far from that, really. We are not just being weird, we are progressing wonderfully. We are doing excitingly well! But of course it is impossible to understand, because even I lose myself even when we're here in sight of our goal. We are so horribly, tantalizingly, mean-teasingly close to "functioning" that it almost feels worse. We, he and I, are literally in that period that could accurately be called Spectrum purgatory.

Dramatic sounding I know, but my dear-sweet-husband is traveling again and I'm so weary after a weekend camping with the scouts, just me, Mom, and my two wildly different children and the rain...and I'm trying to convince myself how good and successful the experience was, how we seem to fit in, sort of, and I'm failing. Anyway, that's another story, isn't it.

Briefly-Thank you for sharing with such compassion and empathy the patience I'm losing and the clarity.

Professor Mother said...

I wrote a blog a few months ago about "passing" as well... and how I sometimes think of autism like Gollum, stalking our house. "It"- normal life, "typical" worries- are so close, and yet so far away... You get reminded afresh again and again.

I know that your "happy talk" to yourself is just trying to cheer yourself up- because the alternative of screaming, crying, etc. just isn't a choice. You're among friends who understand...

AmyLK said...

It is so easy to forget that our kids have trouble with things. They look so normal and even act normally in most situations. Its good to remind ourselves once in a while that we need to have more patience with them and to be the drivers.

So glad that Bud is making such wonderful progress. Good job Mom!

pixiemama said...

On this, Foster's first day at a NT day camp, as I stood outside the pool locker room nearly furious that his 5-year-old sister was dressed infinitely faster than him ... yeah, I needed to read this, too.

Glad you're posting again lately.


Jen said...

I have had this same issue myself. My Elijah is so sweet at times that I think I truly forget he is on the spectrum.

TC said...
This comment has been removed by the author.
TC said...

(Sorry...needed to fix the six bajillion typos...)

Yes, yes, yes.

Plus there's this complicating factor, at least for me: How do you tease out the autism from the just-typical-annoying-child behavior. I don't want N to think that it's OK for him to use his autism/quirkiness/whatever as an excuse to act badly. And it's not always easy to know what is within his powers to cope with, and he's just choosing not to...and what he literally is dis-able to do. I want to come down on him hard(ish) about the former, but I want to cut him plenty of slack/give him plenty of support for the latter.

Some days, it feels like I get it right. Others, I'm pretty sure I'm doing it all entirely backward, and am going to wind up having raised an adult who was indulged in his worst traits, and not supported through his best.

Korta said...

This isn't just about this post... I just found this blog and I read everything on the RSS feeder. My daughter was diagnosed with autism a couple months ago and even though I basically knew it, it's been rough. She's borderline aspergers, which I feel lucky about, but her classmates are just so different still. And they've started teasing her. Her most troubling behaviour is that she insists on grabbing people's noses). She has for ages but now it's been even worse at school, and one of the parents has been yelling at me that he's sick of it, I've tried to explain and he's just furious all the time. I've been crying and playing over in my head what to try to say to this man, and trying at the same time to get my daughter to stay away from his kids, but that just makes my daughter more stressed and makes it worse for the OTHER kids she's grabbing at. The teacher tried to tell the kids the other day to be nicer to her because she really can't help it. I just don't know what to do. There's an autism team at the school (or at least they sometimes come in) but with school ending in a couple weeks they doubt they'll be able to do anything this year. Sorry, she's in grade one, I should say.
I'm sorry, I meant to use this comment to say how beautiful and wonderful your blog is and how much just sitting reading about your son and his classmates has helped! I didn't mean to get all weepy. I am hoping so much that her classmates grow to love her as much as your son's class obviously loves him. I'm so proud of my daughter and how hard she's been trying. Thank you so much for showing that people CAN understand! I really needed this site!

Anonymous said...

I really needed to read this! Thank you! Johnna

Lynn said...

I completely agree. My husband has this horrible habit of always quoting my daughter's age when he is frustrated by her behavior, as in "She's 6 years old now!" I feel so badly because she's really not 6 years old on so many levels, and she shouldn't be held to typical age-appropriate least not all of the time.

Anonymous said...

new blog I found that I like is: because it's written by a man with Aspergers, and it's interesting to get a post-childhood first-person viewpoint of ASDs. Also, the blogger is a comedy writer, so the blog is really funny. I hope you all enjoy it as much as I do.

Alysia said...

a trap we fall into constantly with our little guy. Especially when we expect to handle more than he can. Thanks for the reminder.

Jean said...

As my little autie dude is only 6 we're not at that stage yet, but I hope I will be able to keep in mind that even tho he is improving, that he is still autistic.
Excellent point.

Valerie Foley said...

I just posted a link to this post on another board, with the accompanying statement:

I think this all the time, but I could never ever write it so well.

Thank you so much.


Drama Mama said...

Oh my God.

I feel you just lifted up my skirt and showed everyone my slip.

The cane, the bumping, yes, yes, sigh, yes.

Thanks for reminding ME to cool it.

Melissa said...

My husband and I were just talking about this. We went on vacation with my 2.5 year old daughter. Last year, when we went, she was just shy of going to school and had JUST started receiving services. This year, well, it's been a year... PROGRESS. Needless to say, we've begun to see the difference in her after just a week of vacation. Actually, WE saw it after just a couple of days. And it's partly because the expectation is different now.

It IS frustrating. We'll probably make this a shorter break next year. Hindsight and all.