Tuesday, July 17, 2007

Multiple Choice

Why am I having such a hard time with this concept? It is a topic I've been wanting to write about but have as yet been unable to. Let me explain...
I ended a post a few weeks ago with this cryptic statement: "How we deal with various situations ranging from misbehavior to achievement is dictated by this difference. There is too much to discuss on this topic to include in this post, so I will leave it with this brief statement, and discuss it further next time I write..." It is the literary equivalent of a cud - I just keep chewing on it and it never really changes.

And then tonight I was reading an excellent post by one of my favorite fellow Dad bloggers - VAB at Autista, and the last sentence in his post kind of summed it up for me and set the ball rolling, if you will. The sentence read: "I'm left wondering whether or not MK should want to do anything about it at all, and if he did, whether there is anything that he could do."

And that seemed to set everything into place. The issue I want to get at could be summed up as this: At what point does our responsibility as a parent become overshadowed by our child's ability to behave a certain way? Is this not perhaps one of the most enduring dilemmas any parent of a special needs child will face? Regardless of how one's parenting style plays out, this is an ongoing process that must evolve on an almost moment-to-moment basis every single day in order to have the best chance at a positive outcome for the child.

It entails decisions such as this:
...If my son is spinning in place in a grocery store and blocking an aisle by doing so, is he:

  • Providing himself well-needed sensory regulation, in which case I should be proud of him for successfully using a valuable lifelong skill (autistic tendency);
  • Interfering with other shoppers and needlessly risking injury by becoming dizzy and falling down (the parental concern);
  • Pretending to be his favorite character, Harold the Helicopter, who is saving the Island of Sodor after an awful storm (5-year old behavior)?
So what do we do as parents - stop him? Stop him with threats of punishment? Let him spin and ignore other shoppers? Only let him spin until we perceive physical danger? Any of 100 other possibilities?

...If my son insists on playing in his room, by himself, while a family with like-aged children are visiting, is he:

  • Allowing himself a well-needed break from the action and "decompressing" in a positive, productive way by playing with his trains and talking to himself using familiar, scripted speech (autistic tendency);
  • Being overprotective of his favored toy - trains - by ensuring that he watches all of them and keeps them far enough away from potential intruders that they will be safe (either autism, personality trait, or one being influenced by the other - who knows which?);
  • Blithely unconcerned that other kids are there to play with him, and therefore must be encouraged to join the fun or will remain alone for the duration of the visit(is introverted, may be related to autism or may not);
  • Is a spoiled child who emphasizes possession and dominance of his toys over sharing with other kids (parental concern)
  • Is actually pretending to be The Invisible Man, and each moment that goes by without his being "discovered" is a successful minute! (5-year old imagnation at work).

So what do we as parents do - encourage his imagination? Succumb to the peer pressure of having our son "successfully" play with the other kids? Assume he is spoiled and take away some trains to teach him a lesson? Understand that he is neurologically different from the visiting kids and allow him unlimited ability to isolate himself?

Dilemmas indeed, aren't they?

Much is made among the ND community of understanding and accommodating the behaviors related to the autism label, and for good reason. It has been of great benefit to me to gain first-hand perspective of what may (or may not) motivate a given individual to behave in a given way. However, as the parent of a 5-year old son, I need to draw some boundaries. The major conundrum is trying to determine when I am dealing with a 5-year old behavior and when I am dealing with something else (such as sensory integration problems or movement disturbances brought on by stressors that I cannot necessarily anticipate or perceive). And to put it that way - as one or the other, black or white, is an obvious fallacy according to just about any parent or any autistic person I know. It's just not that simple.

When I sat with the diagnosing psychologist 2.5 years ago, and she informed me of the autism diagnosis, do you know what my first question was? It was this (something the doctor said she had never been asked before immediately after a diagnosis): "Considering that he is autistic, is there an increased chance of other problems such as anxiety or depression?" The only reason I remember this exchange is her response, which went something like this:
"Well, that depends. If your son is of below-average intelligence - if he has mental retardation in addition to autism, then the likelihood is very low. On the other hand, if he is of average or above-average intelligence, which is the case with many autistic people, then he definitely has an increased chance of anxiety and depression. The reason is because he will know that he is different. You see, it is a double-edged sword."
So where that leaves me is that Jason, after a few years of development, is definitely not mentally retarded. He in all likelihood would receive a "lighter" diagnosis now than when he was originally diagnosed in 2004 and followed up in 2005. Both times he received the "classic autism" Dx, but has changed a lot in the ensuing months and short years. These days, a casual observer would be hard-pressed to guess that Jason is divergent from the typical kid. Sure, any of you would know it right away, but Joe Public in the grocery store? Not likely.

This convoluted path of information is actually leading somewhere. Since Jason is one who, at least at age 5, is not obviously autistic to the casual observer, guess what that means? Yes - increased expectations of "normal" behavior. And we, as parents, have the responsibility (and we are thankful and happy to do it) to make sure that Jason successfully walks that fine line between being true to himself and whatever that means in terms of his neurological differences and being able to function well in a society which has many prescripted scenarios which require deft social skills and just the right kind of sensory awareness to successfully navigate.

For those people, either autistic individuals or parents, who may be thinking, "Quit complaining, as your kid clearly has fewer obstacles to success than me or mine", I will not disagree with you. But this post is not about degrees of difficulty - it is just about Jason and his specific situation. I respect the hell out of that boy for the hard work he has done to grow and develop, and I thank God for blessing him with a patient and angelic soul to help him deal with his challenges. I only hope that my wife and I can successfully resolve the dilemma of attributing Jason's behavior on any given day, 100 times per day, to the right source: his age, his Jason-ness, or his neurological differences.


r.b. said...

>>Succumb to the peer pressure of having our son "successfully" play with the other kids?<<

That is it exactly.

I made my own life hell by trying to turn Ben into something he was not. I tried too hard, and then blamed him (by being angry) when he wasn't what he was supposed to be. The way we deal with our kids is sometimes like a mental illness...we keep doing the same things, and getting the same results, because we try to treat them as though they aren't different from their peers. THEY ARE, and nothing we do is going to change that.

I never lost that anger, that frustration, until a 5th grade teacher showed ME how to love Ben exactly as he is. To see his strengths, to see his sense of humor.

I'm probably going to tick off some auties, but there is one thing I figured out about Ben. He has a profound sense of fairness. If you mistreat him, he will find a way to mistreat you. "I win", he will say. The score has to be evened, he can't help himself. And there is nothing wrong with that, it's just the way it is.

Another thing about him is he knows when he is doing wrong (going against my wishes, GOD FORBID, as I am as stubborn as a mule!!!) To put the ball in my court, I take away one of his privaledges (sp?).

Privaledges are something he likes to do, and gets upset if it is taken away. Actually, all I really have to do is say, "If you do this, you will NOT watch t.v. tonight." or "If I have to do the dishes, I'm going to charge you the same amount we pay you. No skin off my rear!" For Ben, money, and especially t.v. privaledges are something he earns by cooperation. Our kids can't be intimidated as NT kids...it HAS to be THEIR CHOICE to obey. I can see that little head clicking up a cost/benefit analysis.......

Get in touch with your redneck self. It makes me feel like a b*tch sometimes, but Ben seems to respect it and not take it personally. That's what works for me, but I have no idea if it will work for you.

Our kids have such a determined sense of self. I find myself butting heads with Ben all the time, but it's really not so bad. He has made me strong.

Bonnie Ventura said...

At what point does our responsibility as a parent become overshadowed by our child's ability to behave a certain way? Is this not perhaps one of the most enduring dilemmas any parent of a special needs child will face?

It is a dilemma for parents in general. Regardless of whether or not a child is autistic, we may not know why he is behaving a certain way. Kids often do things that we don't fully understand, just because they are kids.

I'd advise against overanalyzing a child's motives. Spinning in the grocery store is a bad idea because the child could bump into other people, bump into a shelf and spill food all over the floor, or get dizzy and fall down on the hard floor. Therefore, the child needs to be taught not to spin in the grocery store. Period.

Yes, it's a good idea to try to determine if he needs sensory regulation while in the grocery store, and if he does, to find a reasonable way to satisfy that need (bringing a small toy into the store, for instance, or making your shopping trips shorter so that he is better able to deal with them). But that issue is separate from the practical question of whether or not he should be allowed to spin in the grocery store.

BTW, when I was that age, I did a lot of spinning and running around in grocery stores because the bright lights and busy aisles were so overwhelming. Some kids just can't deal very well with that environment until they are older. If your son always seems hyper and frantic when he is in a store, it might be a good idea to wait a few years before taking him on your shopping trips regularly.

Steve D said...

I appreciate the words of advice. I would like to point out that I was just postulating some hypotheticals in selecting two situations - some situations that may (or may not) be commonly found when dealing with autistic kids. All the same, your words are well-taken and it is nice to get the perspective of someone who has "been there".
Your last sentence gets to the heart of what I am talking about, in which you recommend just not taking him if he is not handling it well. You also recommend sensory strategies. This is a perfect illustration of the number of choices. I want to always make the right choice, though I understand the likelihood of that is pretty slim.

R.B. - It sounds like you have certainly established your own approach - and I'm glad its working for you and your son.

laurentius rex said...

Better Harold the Helicopter in the Gaelic province of Sodor than Harold the obstructive (yes that is what Doherty means in the Irish Language)

Steve D said...

I couldn't agree more, Larry.

Niksmom said...

Steve, I am curious (and forgive me for the intrusive nature of the question), do you and your wife generally agree to the same approach in those sorts of situations. Meaning, does one of you tend to "toe the line" of expectations vs. the other making greater allowances due to autism/age/developmental stage? I am wondering as this seems to happen with myself and Niksdad. How do you strike a balance so that you are parenting as a "team" or united to a greater degree?

Steve D said...

Great question Niksmom -
We are fortunate in that we do tend to agree on most of these issues. To say that we spend a lot of time discussing it would be untrue - life is so unbelievably busy right now that we rarely have time to say "hello". We just seem to both take the approach that erring on the side of caution is the safest approach.
Part of why it works also is that in some cases if a mild disagreement is taking place, I fold. The truth is that I am away at work 12 hours per day, and therefore my wife is more in tune with Jason's patterns of behavior and various issues than I am. If I assumed that I knew better on something like this, I would be wrong. So she (unintentionally) takes the leadership role due to my not attempting to fill it.

VAB said...

Great post, Steve. You spelled this issue really well. I'm going to have to write some more about this. Thanks for stirring it up in my head.

Anonymous said...

I think what you said about the pressure to push your Autistic son to be social. It's a very fine line.

What helped me, as well as alot of people on the spectrum, is video games. It's something you can acheive at without the confusion of social understanding.

The media discusses video games negatively most of the time. However, in my experience Nintendo has always been a company you can trust when it comes to family friendly games. They rarely put out games that are M, and if they do they really let you know that it's M.

A computer also is a great outlet for people on the spectrum. I mean if you think about it, Bill Gates, who is on the spectrum himself invented Windows. In fact there is a virtual model train program here:


You can download it for free trial, and pay for it if you want to keep it.

So in my opinon if finding your son something he can enjoy I'd reccomend the Nintendo DS Lite. There is a difference, the original Nintendo DS had a too small stylus with it, which they made larger for the updated DS light.

Due to parents showing concern that their gamer child might not be getting enough social exposure. There are more ways to enjoy games socially. Such as certain games using Wi-Fi technology to network, to play against other gamers.

I hope this has helped.

Steve D said...

Yes, Violet, you comment is very helpful - and very appropriate, in that Jason is an absolute whiz kid at internet surfing and video games. He successfully self-taught basic web skills just after turning 4, and has a definite knack for games and puzzles. Thanks!