Tuesday, August 29, 2006

Yellow alert

You know how you read all the time about the government monitoring the flow of communication in suspected terrorist networks, looking for patterns that might indicate a mounting credible threat?

Sometimes parenting in Autismland feels a lot like that.

You can't pounce on every small suggestion of a thought that seems to be off-kilter. You have to remain vigilant, attuned to the details while staying focused on the bigger picture. What is an isolated incident? What do the patterns suggest? When is the right time to take action?

It's imperative in Autismland, as in government, that we neither over-react nor under-react. Over-reacting causes panic and paranoia; under-reacting can have devastating results.

I am beginning to recognize a slight pattern of concern in the networks I'm monitoring at Bud's school. Taken in isolation, nothing is a great worry. But it's the pattern that I'm watching and that I'm struggling to interpret.

The messages have been filtering through slowly and gently. The first, in his IEP meeting in June, went something like this:

"I don't think we should encourage him to take Gramps' hat to first grade with him. Other children don't wear hats at school."

A more recent message came through this way:

"Maybe bringing his iPod to school would not be the best idea. He might get too dependent on it. It might be better to find something that other children could use as well."

Taken alone, neither issue is important enough to make a fuss over. Bud will be fine without Gramps' hat, and he will manage without his iPod. As I explained to his teacher, Bud is incredibly flexible in his rigidity. He will, without question, need something to bring him local coherence, but he will be creative in determining what that something will be. Before he discovered Gramps' hat in Kindergarten, Bud stuffed his pockets full of plastic fruit every day. In preschool, Bud sat on the "B" on the alphabet carpet at circle time and carried around the "home" card from his visual schedule. Bud will figure out what he needs to get by in first grade; I'm not worried about that.

But, just like the government agents who monitor the networks, I feel compelled to listen not just to what is being said, but also to what is missing from the messages - to listen not just to the words, but also to the meaning that underscores them.

I need to make sure that if these statements are signs that we are veering off into different philosophical perspectives, I am ready to intervene at the appropriate time to make sure that we don't continue down these divergent paths. I will need to speak up to confirm that "encouraging Bud to be (or just act) like every other child" has not somehow snuck itself between the lines of his IEP.

Bud is not like every other child. Bud is autistic. He will go far, he will do great things, and he will still be autistic.

If Bud had spina bifida, I feel certain that no one would say, "Other children don't use chairs with wheels. In first grade, we walk."

If Bud was hearing impaired, I don't think we'd be concerned about the disparity of letting him be the only child in the room who gets to wear the cool accessory on his ears.

No one would worry that Bud might get too dependent on the wheelchair or the hearing aid.

What makes the accommodations for autism any different?

Children are smart. There was not a single child in Bud's Kindergarten class who didn't recognize that Bud was different. And I don't think there was a child in the class who would have traded places with him, who would have opted to swap the ability to make friends for the privilege of wearing Gramps' hat.

In fact, by allowing Bud to wear Gramps' hat in Kindergarten every day - by letting him literally wear his difference on his head - we gave all of the children in that classroom the opportunity to learn two very important lessons:

1. Different is not "better than" or "worse than"; different is just different.; and

2. Fairness does not equal sameness.

We also allowed Bud to learn a third, and even more valuable, lesson:

You are just right, just as you are.

I'm not obsessing over this. I'm thinking about it, certainly, but ultimately I'm keeping it in perspective. Two incidents do not constitute a pattern, especially when considered in the context of a hundred other messages that indicate that the team at school knows, understands, and respects Bud. This is not a credible threat. It's not time to start banning liquids from all international flights.

But, all the same, I think we need to stay vigilant at the scanners.


Anonymous said...

Amen, sister! :)
Excellent post. You make some very good points.

Daisy said...

I hear you. Oh, my, how I hear you! We described last year as "heightened awareness", for lack of a better term, because of one major event that was blown way out of proportion.

kristina said...

A parent can never be too vigilant---even in our dreams---in Autismland. I often feel I need a barometer or other device to track my under- and/or over- reacting!

Keep those listening ears up and alert.

The Jedi Family of Blogs said...

I agree wholeheartedly that the radar needs to be up at all times... We've been fortunate so far, in that his teachers have understood the importance of things that comfort B & help him to self-regulate. They even requested that he bring Rufus to school when he was in 3rd grade. He is allowed to chew gum, even though it's not allowed at school (he's very discreet about it & had a hard time breaking this rule, even with permission, but it really calms him when he chews). Lately he's been needing to carry things around with him & I've been thinking of ways for them to integrate this with school activities. You are right to be suspicious when they start telling you what Bud may & may not do based on how it looks or what the other kids are doing, rather than Bud's needs. B is aware that some of his behaviours are different than those of his peers, but he's pretty comfortable with it & is happy to explain his tics, etc. when asked. Being comfortable with his differences has made him a very competent self-advocate.

Anonymous said...

The world better hurry up and catch up the exsistance of ASD people. Thay are out there, and they have voices, and the people who love them have even louder voices. I LOVE your post today....

Zilari said...

Wow, some of what you are describing with regards to the suggestions of school personnel are downright scary. I honestly don't understand the "he might become dependent on it!" attitude. Isn't EVERYONE dependent on all kinds of things, every day? How would one of those teachers feel if they were told they couldn't use their cell phone or car because they "might become dependent on it"? Or if they weren't allowed to use air conditioning or a fan on a hot day? Or if they were forced to sit in an uncomfortable, non-ergonomic chair?

I don't know if I'd still have my job now if it weren't for my iPod. And I am by far not the only person who walks around with such a device all day. Going out in public, there are adults -- neurotypical adults even -- who walk around with iPods, cell phones, and Bluetooth ear-mounted receivers, and this is now perfectly normal. Your kid's school people need to get a clue. I commend you for respecting Bud as an individual. :)

Justthisguy said...

Glad to see that you're starting to realize that the "progressive" collectivism is bad for weird idiosyncratic people, and are starting to resist it!

That Dewey fellow was right evil, I think.

(Not the library catalogger, bad as he was, but the other one, the educationist.)

Tara said...

We're on Yellow Alert too!! Yesterday's IEP meeting had a few surprises- not worthy of a plan of action yet, but we will be monitoring the situation closely.
You have to wonder if school district's aren't in need of some sensitivity training where ASD is concerned. I guess from their perspective, fitting in is always more important than an individual's comfort.

mumkeepingsane said...

What a great post! We're a bit on yellow alert here as well mostly because our school doesn't seem to want to have a plan until after Patrick starts his year (except an aid to share with another child has been placed in his class).

DivaMommy said...

What a wonderful post! We are definitely on "yellow alert" (maybe even orange) at my son's school...new teacher, new classroom, 3rd grade, more writing expected, etc. I also hear the "but we want him to be like the other kids" line all of the time. I often think to myself, just like you did, "if he was in a wheelchair, would they make him go up the stairs?" So-called "hidden" disabilities are so hard to manage...my hats off to your wise words.

Anonymous said...

Yes. We are very fortunate in our public school situation this year -- Josh's teacher has different rules for each child, and she expects the class to be able to deal with it. AND THEY ARE AND THEY DO, just as you said.

Anonymous said...

Your thoughts are well put together and very true. I know from writing IEP's that language is the "trick". The outcomes are to be clear and understandable and ACHIEVABLE. There is no point putting on a goal that can not be achieved in the set time. And for heaven's sake, make sure your goals are heard and incorporated...we call it "cross-environment goal setting". If you're working on something at home, ask for it to be included at school. Good luck