The Not-So-Quick Fix

– Posted in: Autism -- The Handbook, Autism Recovery, Newt's Story, Parenting, Personal Insanity

Ugh, I’m gonna make some people mad with this one.

But first, a story.  Right before dinner last night, my husband, Tenzin, told the kids to go and get their own drinks.  Then he told them again.  They were playing, so of course they didn’t move.  Due to the fact I didn’t want them to be killed, I got up and told them again.  This time, I was met with an annoyed sigh from my 7-year-old son, Newt, whom I advised not to get upset with me when I was trying to save him from imminent doom if his father had to come back and tell him to “move it” one more time.  Then began the “Who’s on First” section of our program, wherein Newt and I went back and forth about whether he was actually supposed to get the drink or just tell us what he wanted to drink.  All the while Newt was getting pissier and pissier.

For those who don’t follow our epic tale, Newt was diagnosed with autism when he was three and later tested out of the spectrum.  And more recently, he’s brought to my attention the possibility that he has some sort of auditory processing disorder — a word hits his ear and goes into his brain as a different word.  He’s a smart kid, so he’s figured this out.  Anyway, I’ve been wanting to write more about our approach to working with Newt and how it’s brought him to where he is today.  And I think this story sort of illustrates the attitude we took (which is really half the battle).

So back to the story. . . after I figured out that Newt didn’t know he was actually supposed to get his own drink, I could’ve said, “Oh, honey, did that thing happen to you again?  Where you hear the words and then they sound different in your head, so you get confused and don’t know what to do?”  But no.  That’s not what I said.  Because then Newt would nod sadly and turn into the kid who always gets a pass for being a little shithead who sighs at his mother or ignores his father.  So instead, I said this:

“Okay, I don’t know if you were just ignoring Dad, or if you were concentrating and didn’t hear him, or if you had one of those hearing things happen to you where you don’t understand what someone says to you.  But here’s the thing.  When someone — in this case, me — is trying to help you with something that you know you need to do, the best thing to do is to be nice to them.  Because if someone says something to you and then you have that problem where you don’t hear the right words, getting mad at them definitely isn’t going to help your situation.  Understand?”  And then we went off to have a lovely dinner.

Part of the reason I’m bringing this up is because I got a comment on one of my old posts that talked about labels.  “Anonymous” raised the possibility that the stigma, not the label, of a diagnosis was the actual problem.  She also said this:  ” I am much more troubled by the fact that. . . (m)y distractable daughter is perceived to be disrespectful or disinterested instead of being diagnosed as ADHD, and my Obsessive-Compulsive kid is perceived as seeking special attention when she is suffering inside because she thinks she has to have perfection.”

I don’t know Anonymous or her (I’m guessing “her”) kids.  I’m going to go ahead and make a guess that her life is incredibly hard right now — I can’t imagine it isn’t.  I don’t know if she’s going to be pissed off when she reads this.  But if she is, I hope that after she finishes calling me a few obscene names and maybe even writes some strongly worded emails, she’ll consider some of the things I’ve said.

For us, it was about the label because the label helps to give you a pass.  When our son was acting inappropriately, perceived or otherwise, we felt that his behavior needed to be corrected (because we were interested in having him live and function in normal society).  The problem wasn’t that he might do something “wrong.”  The problem was that we or someone else might say, “Well, he’s autistic,” and let him get away with it.

This is going to sound harsh, but the way we “fixed” our kid was though changing his behavior even when it caused him to “suffer.”  When Newt was between 2 and 4 years old, he had knockdown, drag-out tantrums.  What he hated — what made him “suffer” — was being restrained.  So Tenzin would put him in a sort of bear hug/wrestling hold until he wore himself out (and no, it didn’t hurt him).  Sometimes it took 45 minutes for him to calm down (I didn’t say our methods were easy).

Harsh parenting example number two:  we were at a small concert when Newt was older, and the music was pretty loud, so he put his hands over his ears.  Tenzin told him, “When you put your hands over your ears, you’re being kind of rude to the musicians.  It makes them think you don’t like their music.  So if you can’t sit here without your hands over your ears, you’re going to have to go outside.”  We all watched the rest of the show, no hands on ears.

At this point, the sensory processing disorder people are yelling at the computer screen because I’m a complete jerk for not realizing that loud music probably sounded like nails on a chalkboard to my son and I needed to be more understanding and accommodating.  No I didn’t.  Because I don’t want my son to grow up with the belief that he can somehow make the world fit around him, and not vice versa.  I want him to be able to suck it up if he’s out drinking beer with his friends and they go to a loud bar.  I don’t want him to be the guy who has to leave because he can’t handle it. 

Here’s an adult example.  I have a good friend who’s very sensitive to bright light.  I know this, so when we sit somewhere, I always face open windows.  And sometimes we’ll even turn off the overhead light in her dining room.  But if she’s with other people she doesn’t know very well, she doesn’t insist on changing spots with them or turning off the lights.  Because that would be weird.  She just sucks it up.  It’s like eating food you don’t like at someone’s dinner party.  You do it because it’s rude not to (and right now someone is arguing that my friend doesn’t have SPD, but how do you know that?).  

The thing is, all kids, with or without diagnosable problems, are going to do weird, annoying stuff that’s got to be corrected.  Maybe your kid is weirder, more annoying, and harder to deal with than average — like ours.  For us, we knew that behaviors like throwing tantrums, not sitting when he was supposed to, and talking when he should be quiet were going to irritate certain people in public and get knowing nods from others when he was three years old.  But if we didn’t teach him how to control himself — if we didn’t help him figure it out — by six, he’d be the unruly child whose parents were complete jerks.

And I need to emphasize two things.  First, when we were in the deep, dark, tough times with Newt, I thought about the autism diagnosis all the time.  And hard as I tried, I still couldn’t help but give him a pass once in a while (Tenzin was the steady, not me).  There was also a ridiculous amount of crying (some from Newt, most from me).  And second, the other half of this “suffering” equation is absolute, unrequited love.  Because in order to have your child understand that it’s his behavior, not him that’s the problem, he needs to feel safe and secure.  He has to want to be with you when you put him in a different room as a punishment — otherwise, it doesn’t work.  He has to want to sit on your lap at the concert.

So my advice to Anonymous, who didn’t actually ask for my advice and is probably yelling at her computer screen right now, is to not worry about how your daughters are being perceived and to concentrate on helping them behave their way into “normal.”  By that (and again, I don’t know your situation), I mean if your daughter with ADHD is running around the table at dinner, make her sit down — because it’s disrupting the family and that’s not what people do at dinner.  And if your daughter with OCD is washing her hands ten times whenever she uses the bathroom, tell her she can only do it once because it wastes water.  Don’t stop them from doing things just to be mean.  Do them for a reason.  And follow up with a ton of attention for the great stuff they’re doing (and again, I don’t know your situation, and you’re probably already doing all of this — but I’ve discovered that some people have no idea what I’m talking about).

I just strongly believe that children’s brains are incredibly malleable, and if you keep working away at them, a lot of these behaviors that we’re seeing so much of right now can be helped.  Tenzin always held fast to the idea that Newt’s brain just needed some more time to get it’s wiring straight, and we simply needed to help him make the connections.  But if you don’t make the connections, if you do let things “pass,” the window of opportunity becomes smaller and smaller.  And the changes become harder and harder to make.

And one last thing (will she ever shut up?).  When it comes to changing behavior before sliding down the slippery slope, I know of which I speak.  I periodically go through “germophobic” cycles.  I could let these feelings take over and eventually become the girl who needs to take a scalding hot shower before she eats only boiled food with a sanitized spoon.  But instead, I force myself to do things like use a “yucky” public restroom, walk barefoot everywhere, and eat raw cookie dough.  Eventually the feelings pass, and I become a normal human being who can take a bite off of someone else’s fork and not go ballistic when the kids come and lie on my bed while wearing their dirty school clothes.

The thing is, hardly anyone knows this about me.  They see me as the mother who gave her kids their pacifiers after they fell on the floor because she strongly believes in the five-second rule.  And that’s who I usually am.  But sometimes this other side creeps out, and I have to work to make sure it doesn’t take hold.

And one more, one more thing (oh, for the love of. . . !).  Anonymous compared autism, ADHD, and OCD to dyslexia.  Essentially she said, would you want to stop diagnosing dyslexia?  How would you get help?  To be frank, I think dyslexia and autism, et al. are like apples and oranges.  Dyslexia makes it hard for you to read.  The others make it hard for you to get along in the world.  Dyslexia can be overcome by learning an additional set of skills.  As for the others. . . well, you’ve heard my opinion.

And all I can really offer is what’s in front of me.  Yesterday, Newt had his very first soccer practice and loved it.  If you’d asked me four years ago if I ever thought I’d see him playing team sports, I would’ve given you the old, “Well, um, if he does end up playing anything, I think he’ll probably, um, stick to more of the individual games like tennis or golf — things he can do by himself.”

Incidentally, his best friend on the team is most likely dyslexic.  And it turns out no one had to teach either one of them to love kicking the crap out of soccer balls.

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17 Comments… add one

traceelements August 25, 2010, 4:33 pm

Sitting here applauding! Perhaps I have no right to comment as I've been incredibly fortunate not to have had any challenges like yours with my kids. But it all makes so much sense. And I think you're so on the money with the statement '… all kids do weird/annoying stuff that's got to be corrected..' You see so many older kids getting away with bad behaviour because it was 'cute' when they were little… Good on you both! I am so impressed!

PartlySunny August 25, 2010, 4:44 pm

Trace, that's just because in Australia, you people aren't a bunch of wusses:). Thanks for the comment.

traceelements August 25, 2010, 5:56 pm

I wouldn't be so sure, it's not so different over here in many things.

trydefyinggravity August 25, 2010, 7:17 pm

So you know I was waiting for this one, right? 🙂

First off, if anyone gets “mad” at you for voicing your opinions on your own blog, that's their problem. As parents we should be tolerant of each other's views, just as we should be teaching our kids the same thing. Every kid is different, which means every parent is different and every parent has a different approach to their kids, even within the same house.

Secondly, I think we should clarify that we're talking about kids potentially classified as having high functioning autism, right? Or at least I'm going to clarify that.

Thirdly, we don't disagree all that much on our the end goal, just a little bit on the approach. Your methods are similar to the behavior program my son is on at his school, with incentives for behaving “appropriately” and losing preferred activities when he doesn't. It's all about modeling good social interactions. Our developmental ped told us what your husband said – our son's brain paths aren't quite formed the right way yet, so with intensive services (in his case some ABA therapy, OT and one-on-one support) he'll learn the appropriate coping strategies. Sound familiar?
We also agree on expecting certain behaviors in and out of the house. If our son can't sit appropriately at the dinner table, we take him away. We don't make public excuses when we're out for his behavior, we remove him from the situation.
Here's where we differ, and I'll apologize if I'm not saying it as kindly as I'd like. I accept his differences as part of him. I know he'll always have a hard time in loud rooms, or chaotic situations, and will always have a hard time regulating his body (his SPD and auditory processing stuff clearly drives his ASD diagnosis). I'm not going to ask him to suck it up. I am going to teach him that it's ok to remove himself from the situation if he's feeling out of sorts, because the other option could be more stressful. I want him to learn his own coping strategies so he knows the words and actions to make it “right” for his body.
What I truly believe is that EVERYONE is on “the sensory spectrum” – we all have things…some call them quirks, some call them issues (I'm a germaphobe too sometimes). What is different is that most of us can develop coping strategies on their own. My son can't. Yet.
See? That wasn't so bad, was it? Still want to be my friend?

PartlySunny August 25, 2010, 10:16 pm

@trydefyinggravity: Oh, my friend, this makes me so happy, you have no idea. The fact that you're doing all of these things with him makes me want to do back flips. And I think we're way closer together on this than you think. When I talk about Newt “sucking it up,” I'm talking about a very long, drawn-out process. It's not like we took him to the lake one day, pushed him off the pier, and yelled, “Swim boy! Hope you make it!” This took years. I don't know if you caught the part in my original description of our life with him when I said we never went out. I wasn't kidding. We hunkered down and let him learn to develop his abilities to handle chaos and stress. So it was all baby steps.

And I agree — everyone is somewhere on the sensory spectrum. Which is why I guess I get so bugged about people flipping out about a lot of this stuff. Sometimes I just feel like everyone is asking to be categorized as having or being something. And I honestly don't know what drives that. I understand that there are certain things about people that can be “fixed” or “helped,” but some things just are what they are.

And all I have to say is, our boys have some kick-ass moms. Lovin' you more each day:).

deborah August 26, 2010, 7:59 am

might need to copy and paste this where everyone can see it. perhaps some could argue the spectrum thing….but the message and spirit in which you lay this all out, is brilliant. i also have some lighting issues, my kids both spent time in the *resource* room and at the end of the day….i want my kids and myself to get-along and get going. you rock partlysunny:)

trydefyinggravity August 26, 2010, 8:31 am

I can tell you what drives the need to be categorized (on my soap box one more time): our laws and our insurance companies. Without a label, we get no help. I don't think deep down anyone wants to have their kid labeled – whether it's ASD, or SPD or whatever. Before our son's diagnosis, we were denied extra help at school because he tested within the norm (and don't get me started on the “norm”). He actually had his SPD diagnosis, but because it's not recognized by the DSM, blah blah (more soap box) After ASD diagnosis: ABA, OT, etc…all things he (and we) needed to help him. We'd still be lost without it. Our school couldn't give him the services he needed until he had a label.
So until schools/insurance companies recognize the individual needs of kids and help them when they need it because they need it, then we'll have the need for parents to have their kids in categories.
There. Just stepped off my soap box again. Glad you're still letting me comment here 🙂 And yes, we are kick-ass parents. In fact, I have to go kick some asses out the door to go play outside.

PartlySunny August 27, 2010, 10:38 am

@deborah: Thanks! You're always so encouraging.

@trydefyinggravity: I understand. And it's additionally confusing because things differ so much from state to state (and even school district to school district). I'm not sure how it happened, but we somehow ended up just falling into our government-paid services. He qualified for a tiny bit of speech, but when he got to the school, they immediately offered to put him in their developmental preschool program (2-ish hours a day). For us, that was the extent of it. I'll do another post on what we did education-wise here soon — I promise. It was a huge part of this. But anyway, everyone has to do what they need to in order to accommodate their particular family situation. And I can only imagine how frustrating it is to try to get help — knowing there's a problem — and having it fall on deaf ears. It's like a person with cancer having to spend most of her time on the phone with insurance companies instead of concentrating on fighting her illness.

I suppose my issue (well, I have lots of issues) with all of this is that so many kids are being thrown into the autism category, and I question that. If it's true, then they need to redefine some things because apparently, you can cure it! But I suspect our son fell into the parameters of their test criteria (he definitely had problems), and as a result of growth and us working like crazy with him, he's developed into a “normal” kid. And I think there are a lot of kids out there who may just need what he needed — consistent parenting, creative environment to make his rigid little brain loosen up, and time. But then, I'm a little crazy (which also helps!).

lisa August 29, 2010, 12:07 pm

Just love reading the blog. It's something we can all learn from, no matter what our children are doing at the moment.

PartlySunny August 29, 2010, 12:38 pm

Thanks lisa! So glad you like my blog. I think you're absolutely right. It's not as if we treat our “typical” daughter any differently as far as preparing her to be able to appropriately navigate the world. Truth be told, just recently she was a much bigger problem than our son! But I think that's just because she's younger and was going through a defiant stage. Not unexpected.

PartlySunny August 29, 2010, 12:42 pm

I'm not sure what glitch occurred, but “Anonymous” commented back, and while I got it on my email, it didn't show up here. Frickin' Blogger. Anyway, here's her comment:
**********
Well, here I am responding just as you imagined. I think it is sad that you are trying to “correct” your child so that they live in a particular way when they grow up. By doing that, you are only suppressing the benefits that a disorder can yield.

Acquiring the labels of ADHD and auditory processing disorder helped me immensely as a kid and as an adult. It showed me that I wasn't alone in my struggles and that there were ways of improving. It also introduced me to the fact that many successful people have lived with similar maladies and used them to tremendous success.

Now, I don't envy my parents for what they had to put up with. I was a horrible child. But thankfully, they understood that I was not operating the same way that most people do. Instead of trying to “correct” me, they put me in situations where I could succeed. That approach – not hands off, but not suffocating – has made all the difference in making me who I am.

Now, I still have trouble with many ordinary tasks, but that will always be my burden. And that's okay. Because what I've gained is worth so much more! I love how my mind works. It lets me do incredible, creative things that I wouldn't be able to do otherwise. I'd never give it up. And I'm not alone.

“If someone told me you could be normal or you could continue to have your ADD, I would take ADD,”
– David Neeleman, CEO of JetBlue
http://www.additudemag.com/adhd/article/754.html

That doesn't mean things are easy. Coping with the world is still a difficult task, but I'd never trade my particular situation for that of a “normal” person. My personality and my disorders have only contributed to my success.

PartlySunny August 29, 2010, 2:15 pm

@Anonymous: Thanks for writing back. I get from reading this that you think we're somehow trying to stifle Newt's creativity and natural abilities. Actually, it's the complete opposite. Since day one, we've been focused on encouraging him in everything that he does — unless it adversely affects other people or is going to be a behavior that will make functioning on his own very difficult.

We know that Newt has an incredible mind. And the last thing we want to do is waste that. So he's surrounded by people who encourage and recognize his talents and strengths. But as parents, what we're trying to help him with are the “get-along-in-the-world” things. Even your JetBlue guy said he had to train himself to put his keys and wallet in the same place every day. We're just helping our son start those types of habits early. I don't see how being able to function well and easily in the world is mutually exclusive from using your uniquely wired mind to be creative, innovative, and entrepreneurial.

You said that by correcting Newt, we're suppressing the benefits that a disorder can yield. So I'm just curious. Does that mean if my son won't/can't sit down for more than two minutes at a time, I should just let that go and chalk it up to a creative personality? And I'm not trying to be sarcastic or coy here — I'm serious. If a disorder has beneficial properties that shouldn't be suppressed by correction of any kind, how do you know where those stop and start?

Personally, we looked at our son and said, he's a boy, just like any other, who needs to know what's right, wrong, acceptable, and unacceptable. We'll encourage and love him just like any other child. But he's not getting off easy. Because, in our opinion, that would be negligent on our part, and he deserves the best.

Verity August 29, 2010, 8:08 pm

As someone who knows Newt as one of the most creative, crazy, wonderful kids I know, I almost laughed out loud when Anonymous wrote that it was sad that he was being corrected to live a certain way. If anything, Newts parents are some of our more liberal friends – liberal in the sense of allowing the children to choose activities, really listening to and acting on the children's desires. That house is so full of creativity and child-directed activities you would think there were 10 kids that lived there. So I think there may have been some misunderstanding, or maybe not…I'm certainly no expert on raising a kid on the Autism spectrum. To me, letting a kid know that he can't always eat off the blue plate, or sit in that one chair or cover his ears when things are too loud – that is good parenting. Because when he is older there won't always be a blue plate, or that kind of chair. And sometimes you need to know how to suffer through something too loud to gain something else. I don't mean to trivialize anyone's situation at all, I just know in my heart that you didn't quite get what PartlySunny meant about Newt.

PartlySunny August 29, 2010, 9:53 pm

@Verity: It only looks like ten kids live in my house because it's always such a freakin' disaster.

Thanks my friend:).

Julie September 3, 2010, 12:03 pm

This reminds me of my friend Kari's battle to keep her son from “living down” to his PDD-NOS label. Much to her chagrin, his teachers would give him a pass for the sake of restoring/maintaining order.

I applaud your approach, like hers, all the more because I know it's not easy to stick to it. Love that you've got success to show for it.

PartlySunny September 3, 2010, 12:20 pm

@Julie: I empathize with teachers who have so much to deal with every day (some of my best friends are teachers), but this is exactly what I mean. I don't want anyone being soft on him.

Thanks for stopping by!

Anonymous January 7, 2011, 4:48 am

There is no one size fits all approach to raising children and handling developmental delays and disorders. My son was dx'd with autism, was later reassessed and did not land anywhere on the spectrum. I don't think I cured him of anything. We helped him through his challenges. He still has some quirks but they do not interfere with his life and functioning. No one who knows him would ever suspect he once had a dx. I think that sharing your story is wonderful but I do take issue with your suggestion that neurological disorders can be “cured” by parents.

Our oldest daughter sounds a lot like your Newt. She was never dx'd with anything. If I had been more aware of autism when she was younger I'm sure we could have had her dx'd. She had sensory and social issues that were very worrisome. Now she is completely “normal”.

I don't think your experience with Newt is that unique but I do think you offer lots of great advise. The one caveat I would add however is that you can have two children dx'd with “high functioning autism” and their characteristics and personalities and prognosis can be completely different. The same strategies will not yield the same outcome in every child. This doesn't mean that parents shouldn't do everything they can to intervene and help. We just shouldn't assume that if a child continues to have challenges that the parent isn't doing enough.

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