My Autism Insights

image and prompt from Mo of Manic Monday

There are many things I waffle about: what to eat at any given time; which job I want to focus on first; whether or not I want to stay up to watch television after work or just go to sleep like a smart girl.  It’s safe to say that I waffle about almost everything.  Almost.  I can’t say that I’ve ever waffled about feeling a deep gratitude for both of my kids.

I was doing some research this morning and came across a question on Yahoo Answers. A woman was incensed because she was getting calls from her son’s guidance counselor. Why?  Because she’d told him that she wished she’d never had him.  (There was no indication of him having special needs by the way.)  Now, I won’t crucify her here (many of the people who responded to her question already did that), and I can’t say that I’ve ever encountered anyone who would ever say that to their child. But after reading all the responses ripping into this woman, I had to wonder: have these people never had such a thought, at least in the heat of anger or when wallowing? Not saying it’s a good thought to have, and not saying I’ve personally had the thought, but it seems to me that even the best, most loving parent should be forgiven a moment of human frailty - at least if they keep it to themselves?  Even if not about my kids, I’ve had a thought or two that were pretty grimy.

At any rate, I doubt the woman really meant it what she said, and she probably (somewhere deep down) felt badly about saying it.  But a better thing to consider would be if any of us can honestly throw stones.  Something else for me to waffle over.  What do you think?

Here’s what I find ironic:

Parents of autistic kids will spend a great deal of time teaching their kids social skills for a variety of situations.  For example, when we take the kids to a restaurant, there’s always some discussion of the restaurant rules: using inside voices, staying in our seats, using utensils…It’s a good bit of work, but we do this because we want our children to be able to function in a less-than-tolerant society.

Why then can we go to a restaurant and see a group - 2 adult women and 4 children under the age of 10 - where the children wandering around the restaurant for the majority of the time they were there?  They weren’t being exactly obnoxious, it just seems like life has thrown us yet another double standard.  They didn’t get any funny looks (that I noticed) for wandering around tables where people were eating…standing in chairs…climbing on the fireplace…

And yet my child is the one labeled with the “problems.”

“Does that seem right to you?” ~Jubal Early, Firefly.

Today I am particularly thankful.  It’s a frosty 12 degrees with a windchill of -6.  I despise the cold above all other things, so why am I so grateful today?

1. For starters, the cold and light snow we got last night meant a 2 hour school delay this morning.  Usually, that would make me groan, but not today!  Delay meant that  a) I had to cancel my client and b)  no bus stop.  Both of which translate to me not having to be out in the cold.  I did have to clean & move my car, but it was a small price to pay in order to be able to stay home near a blazing fire.

2. I am thankful that our pellet stove is (knock on wood) in good working order today!  It’s a pain to have to clean every morning, but it is rather toasty in here, and for only the same cost as it would be to run a fan.  Gus loves it too, and he’s gotten pretty good about being near it for warmth without being unsafe.

3. On a more serious note, I am thankful that Gus has never been in a situation where anyone’s felt the need to physically restrain him.  I came across the story of  8 year old Evelyn Towry yesterday, and it tied my stomach in knots for the rest of the night.  There is something seriously wrong when a group of adults can’t think of any other means of handling a situation with a child that young - a child with known disabilities - that don’t involve physically restraining the child.  Clearly the school is in need of some education.  Best wishes to Evelyn and her family.

Chime in and share what you’re thankful for today.

Mary at Bon Bon Gazette and the NJ Moms Blog did a couple of posts on this on this topic that I saw last week, and then I read this comment from a reader to my weekend post:

“I also have a son with aspergers syndrome. Justin is 12 yrs old a very quiet pre-teen.  Who is a 7th grader in Jr. High. My main concern is that the kids at his school has started seeing him as an “easy target”. Justin won’t tell on these kids because he doesn’t want to get people in trouble. He is such a kind hearted boy and wouldn’t even hurt a fly. How can I get him to understand that what these kids are doing to him is very wrong and he needs to get help from an adult to put a stop to this once and for all? Please somebody help me and tell me what I should do as a parent!”

It’s disturbing that bullying is such a prevalent reality for so many students with special needs.  With most kids on the autism spectrum, they may not look any different from their peers, but they often exhibit behaviors or a lack of social savvy that makes them easy targets for bullies.  The harassment typically becomes a serious issue around middle school age and can last through high school.  A conversation with Gus’s counselor revealed that students on the autism spectrum often don’t understand that they are being mistreated; they can think the abusers are their friends and that must be the way friends act.  She mentioned a high school Aspie who would do some pretty outlandish things at the urging of other students because he didn’t realize they were mocking him.  Another child began to view the physical abuse he was receiving at school as a ‘ritual’ and it fed into his perseverative tendencies.  He would actually seek out the bullies because the abuse became his pattern until he was hurt and the school nurse intervened.  The victims will usually not speak up for themselves, and the bullying may not go unchecked until there is some severe incident or the victim’s behavior begins to change and a parent, teacher or counselor takes notice.

Schools are becoming more responsive to these incidents because the situation has gotten so bad.  Although there are federal laws (Rehabilitation Act of 1973, Americans with Disabilities Act of 1990) protecting the disabled against harassment in any educational facility that received public funding, on a practical level, it doesn’t offer much in the way of prevention.  So what can parents do to protect their children from being tormented by their peers?

Be Aware

You can’t be with your child all the time, but you can be aware of any changes in your child’s behavior or appearance.  Notice if your child is coming home dirty, with torn clothing or with bruises.  Changes in behavior may include reluctance to go to school, an increase in behaviors that indicate distress (like stimming), changes in sleeping or eating, flinching, aggression or out-of-the-ordinary withdrawal.  Also, don’t be afraid to ask questions of teachers and classroom aides to stay on top of what goes on during the school day.

Your IEP as a Tool

While you can’t directly have antibullying written into your child’s IEP, there are goals that can be written in to help reduce the risk of bullying.  Goals that specifically work to increase social skills like recognizing social cues, assertiveness, or avoiding and handling bullying can be helpful.  In addition, it may be possible to request services to prevent bullying such as staff monitoring in areas where bullying is likely to occur.  If bullying has or is occurring, counseling support should be made available.

Educate the Peers

Emily at A Life Less Ordinary has had to deal with bullying and came up with a fantastic idea to educate her son’s peers about her son so that they would have a better understanding of some of his behavior.  If Bullying Prevention programs at schools took a similar approach and educated their students about autism and other special needs, it might help reduce the ‘otherness’ of the special needs students.  See what your child’s school or district might have in place for conducting this kind of diversity training.  If nothing’s available, be proactive and try to get something started.  And remember that kids who are neither bullies nor victims can play a role in bullying prevention as well by being encouraged to take a stand against it, as noted in the Autism Asperger Publishing Company’s Winter 2006 Newsletter, which was devoted to the issue of bullying.

Who Should You Take the Issue Up With?

As much as parents want to protect their child’s well being, it is possible to make the matter worse if you address the bully directly – it can just cause the situation to escalate.  But you can’t ignore it either.  Likewise, contacting the bully’s parents might have an adverse effect.  If the incidents occur in school, start with your child’s teacher.  If that doesn’t help, try the school principal.  In severe cases, or situations where the school administration can’t control the situation to keep your child safe, remember that the law is on your side if you have to contact local authorities.  If you still don’t feel that your child is safe, home schooling may be an option to consider, at least for a while.

Other reading

Some available resources:

Preventing Bullying of Children and Youth on the Autism Spectrum

Bullying (and Asperger’s Syndrome)

Bullying Among Children and Youth with Disabilities and Special Needs

NAS: Bullying: A Guide for Parents

And The Gray Center has several books and a DVD available on the topic of bullying as well.

If you have anything to add, or if I’ve misstated something, by all means, add to the discussion of this very important topic.

We got our tree today, and I don’t remember it being such an exhausting thing when I was a kid, but I’m wiped out.  Lucky for me I get to stay up and work tonight.  Christmas tree day has become one of the parts of the holiday season that I dread just because it’s so draining.  Picking out the tree is easy enough, it’s just what happens afterward.  I often feel bad for the tree.

Today was no different.  I let the kids decorate the tree, not out of any sense of benevolence, but because I have no choice.  Before the netting is even off the tree, it’s trunk barely secured and wet in the tree stand, they attack with gobs of ornaments.  Inevitably I yell to back off at least until I can get the lights on, but apparently the cold alters their ability to understand English.  They only sentence they seem to get is, “If you don’t ________, I’m calling Santa and canceling Christmas!”  That works for all of 30 seconds.

In all seriousness, how do you handle this event with your special needs child?  We try to minimize the overexcitement by delaying the tree purchase as long as possible.  I’m going to spend the next 2 weeks repeating the mantra “leave the tree alone.”  I’m not trying to be a Grinch here, but there are, at the very least, some real safety concerns when a seven year old wants to keep plugging in and unplugging lights or when he’s being wild right next to a seven foot tree.

Getting the tree is not only an exhausting experience for me, but for Gus as well.  He becomes completely obsessed with the it but also wants to do the right thing and stay away from it, so he’s engaged in a constant inner tug-of-war.  The poor kid crashed before his head even reached the pillow and he was crying because his five wishes hadn’t come true, some of which were: the bathtub being longer, the drain being made of wood, and that our house would turn into a giant carrot (he later changed the request to a giant olive.)  I’d say he was pretty fried.

So would it be better to just skip the tree madness altogether?  Do we wait until it’s even closer to Christmas?  I’d love to hear how others handle this.

Vitus Bering - the real discoverer of Alaska

A day off from school can be a very enlightening thing.  Gus was home yesterday, and although I always do homework with him after school, it was a different experience doing it earlier in the day.  He absolutely did not want to do the work when I wanted him to and there was a good deal of acting out: rolling on the floor, loud talking, purposely filling in incorrect answers…I was frustrated, he was annoyed - actually this sounds like a typical day, except for what happened next.

Gus was (has been for several days) fixating on geography: who discovered ____; what’s the capital of ___, that sort of thing.  So, instead of doing his reading assignment or his math problems, he was going on about that.  Finally, as he was rolling around on the floor asking about who discovered Alaska, I said, “Well, I think Admiral Perry started out with 3 ships and then 5 more ships followed along.  How many ships got to Alaska?”  Booyah!  Instant transformation!  We got through a sheet of 3 digit addition, 3 digit subtraction, the stupid reading assignment about how to meet a dog (he hates dogs) and then he asked for, DEMANDED, a third math sheet.  He did not want to stop working.  Amazing how such a small shift completely commanded his attention.  Each problem became a made up story about some exploration to some country.  By the way, I stink at geography and I was spouting more crap than a newborn, but he didn’t care - I was working with him on his terms and he loved it!

So this begs the question, “Why can’t his teachers do the same thing?”  First of all, why is what they want to teach more important, more significant than what he wants to learn?  Does he really need to know the proper way to greet a dog?  It’s totally irrelevant to him - he’d be running in the opposite direction.  However, Admiral Perry having to fight off a team of sled dogs because he approached them the wrong way is pretty darned entertaining.

I looked back at some of his assignments, and aside from their irrelevance to his life except for the fact that they were readings about animals and he likes animals (I like chocolate chip cookies, but too many and I will still get sick to my stomach), there was no context.  For example: there was a booklet of geometry questions.  Across the top, he had written, “NOOOOOOOOOOOO!!!”  That was a hint right there that he wasn’t interested in the assignment.  But I wonder, if the teacher had sat him down and said, “Pikachu is battling Paul’s Electabuzz and the only way to make his volt tackle work is if he can bounce off a tree at a right angle.  Find the right angles.”  I bet he would have found them all in a matter of seconds.

I’ve been told on a regular basis that my son can’t or won’t focus.  He’s not the problem here, I’m starting to think.  He can focus just fine - on the things that interest him.  Is it his job to shift his interest to what the educational system thinks is relevant and important, or is it their job to present the information to him in a way that will engage him?  I won’t even dignify that with an answer.

The point is that we have to stop laying blame against people who are just being who they are, and as caregivers (parents, teachers, administrators, therapists, physicians) we need to get over ourselves.  What we think is significant ain’t necessarily so.  If we are going to have any hope of helping individuals on the autism spectrum, or with ADHD, or any kids for that matter, we need to start allowing for some creativity and flexibility in thinking.  We’ve got to think out of the box a little and stop being so draconian - let’s at least meet them halfway.  Can it really be that hard?  I somehow don’t think it is.

P.S. Rear admiral Robert PEARY discovered the North Pole(this is disputed); Vitus Bering discovered Alaska; Henry Hudson did discover Manhattan, but Peter Stuyvesant did not discover New Jersey.  Pikachu did in fact kick Electabuzz’s butt.  Fat lot of good that traditional education did me.  I’m sure Gus will figure out the truth about all these guys, I doubt I’ve done irreparable harm.

As I was all geared up to start ranting about Dennis Leary’s disgusting comments in his new book, Why We Suck: A Feel Good Guide to Staying Fat, Loud, Lazy and Stupid, my husband made a point that completely defused me, “Why is anyone surprised?  He’s a twit.  He’s always been a twit.”

Well…yeah.  Can’t argue with that logic.   The offensive material:

“There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can’t compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don’t give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He’s just stupid. Or lazy. Or both.”

Some links to a few of my favorite blogs discussing the matter:

Autismvox , A Life Less Ordinary , Memoirs of a Chaotic Mommy , and Marla Baltes.

In fairness, here is a link to E!Online in which Leary feebly attempts to defend his words.

You know, I had gained a little respect for Leary when I watched a few episodes of Rescue Me.  I thought that maybe he’d grown up.  Apparently not - he still goes for the cheap shot and the easy target.  I may not be surprised, but I am still offended that he would call so many moms “inattentive” who are really giving their all to help their children, and that he would refer to so many awesome kids as “stupid.lazy or both,” who have to work infinitely harder to get through a day than their typically developed peers.  I mean really, how much more attentive could we be?  If I was any more attentive to Gus, the poor kid would get a hernia from lugging me around like a backpack.

I think this moron got his C’s mixed up.  A comedian is someone who makes people laugh with things that are actually funny.  A coward is a loser who would take a cheap shot at someone, turn tail, and then hide.  Don’t hide behind your lame excuses and justifications, dude.  Just admit that you were wrong, recognize that you weren’t funny, and let’s all move on - without my, or probably any autistic child’s parent’s, money in your pocket.  I prefer not to deal with people who “suck” as you so clearly do.

Prompt and image from Manic Monday

“The moon’s an arrant thief, and her pale fire she steals from the sun.”

~William Shakespeare

“M-O-O-N that spells…”

~Tom Cullen from The Stand by Stephen King

That spells little thief is what it spells!  I think the coming full moon might have driven poor Gus a little mad yesterday.  More likely he was overtired and had lost what little amount of executive functioning he normally has.

We were having a lovely organic-apple picking afternoon, but by about 3:30 Gus was a bit fried.  We’d been out in the sun for over close to two hours; it had been a long day.  (Yes, I’m going to make every excuse in the book.)  We went to visit some farm animals - goats, chickens, a rooster - which was in itself a little angst provoking because Gus wanted to see the animals, but was also scared.

So there were some kids playing in the area and one of them was the owner of a kiddie car - you know the ones: a motorized 4X4 jeep kind of thing.  Said car was sitting under a tree sans owner, with owner’s caregivers.  You know where this is going.  Gus got it in his head to take the car for a joy ride.  Caregiver 1 and Caregiver 2 said no, stop, blah blah.  I yelled no, stop, blah blah.  Gus gleefully ignored us all and revved that bad boy right up!  Caregiver 1 tried to get in front of him to block, but pfft, he wasn’t stopping.  Dang near ran the lady down.  Then he banked left and tried to make a run for it.  Caregiver 1 almost got hold of the back of the car, but lost her grip.  I finally caught up to him and tried the same thing, but I was afraid the back bumper would break, so I had to grab him instead.  I pulled him out of there like a fisherman with a bluefish.  He thought the whole thing was great fun.  At least he did until he had to apologize and then go back to the car.

Moon madness or overtired?  Maybe a little of both.  There are two lessons to be learned here.  First, pay close attention to your special needs child on family outings.  Gus had been wandering and saying that he was getting tired for a while before we headed over to the animals.  We really should have called it quits much sooner or at the very least given him some down time in the car earlier.

Second lesson, never underestimate that moon madness and don’t schedule family outings within 3 days of a full moon.

Weeks like this, when everyone is feeling awful and communication is essential, make me truly appreciate just how far Gus has come over the last few years. He’s very verbal now with his main speech issue still being pragmatics. But there was a time that I remember quite well when he stopped developing language.

From around 12 to 18 months, he was acquiring words at a fast rate. Then around 18 months, he didn’t exactly regress, he just sort of stopped. And instead of starting to put those words together to communicate, he fell into a pattern of constant tantrums. The winter between 18 months and 2 was the worst we’ve ever had. I was pregnant and home bound with a child that I didn’t understand.

Fast forward five years and we have a child who can tell me exactly how he’s feeling.  Last night, he had a stomach ache, but didn’t feel like he was going to throw up.  This morning, his head was hurting a little bit, and his cough was “50% better.”

All his progress was a direct result of intensive education from the time he was 2 and a half.  Speech therapy, a brief time with PECS  and ABA for 2 years  all helped Gus to be the boy he is today.

AP Photo by Charles Dharapak - notice how McCain Still refuses to look at Obama!

My decision was not swayed after watching last night’s debate, but I gained a bit of insight into John McCain that was a bit disturbing.  I am even more concerned than ever about that man getting into the top office of this country for two reasons.

Although the debate was supposed to be about foreign policy, there was no way to avoid at least some discussion of our domestic economy.  When pressed on the issue of what would have to be foregone from his plans in light of the proposed bailout, John McCain’s response was that there should be a freeze on spending except for veterans, the military, and institutions like Medicare.  No mention whatsoever about people with special needs or children or pretty much anyone else in the country in need of support.  One reason this bothers me is that his running mate vowed to make families of people with special needs a priority.  Did McCain not get her memo?

I look at his reaction as having one of two causes.  Either it was an emotional reaction and he didn’t really mean it as drastically as he made it sound, or he totally meant it and never intended to support individuals with special needs in the first place.  Whichever way you look at it, it’s a problem.

Let’s say he was just experiencing a knee-jerk moment - it happens to the best of us under pressure, right?  That doesn’t make it the best way to deal with a situation.  His blanket spending freeze would be akin to me saying to my family, “Okay, we’re spending too much in this house, so going forward, that’s it - no more spending!”

“But Mommy, what about food?”

“Start rationing out those hot dogs and suck it up!”

Not the most practical solution.  And while it’s a big enough mistake for me to have those kids of periodic emotional overreactions with my family, it’s way worse for the leader of a country to not be able to hold himself in check, take a breath, and make a more rational decision.

Now suppose he wasn’t being emotional and overreacting.  I’m not sure if IDEA (Individuals with Disabilities Education Act) funding falls into the same category as Medicare.  If not, without that funding, it will be even harder to get services for our special needs children than it already is.  That’s not looking out for special needs.  That’s kicking us right in the butt.  Clearly this is not an issue of particular value to him.

My other major concern about McCain’s performance last night was the fact that he didn’t look at Senator Obama once during the entire 90 minutes.  As anyone with a child with autism knows, lack of eye contact is one of the first markers in diagnosing the condition, so I know a bit about it after seven years.  Not only did he refuse to make eye contact, he wouldn’t even look in Obama’s direction.  His body language was rude, juvenile, dismissive, angry, and completely inappropriate for someone wanting to lead a nation.   My five year old refuses to look at someone when she’s angry at them.  I would not put her in the president’s office to deal with foreign leaders.  If he can’t bring himself to look at his opponent during a debate, how the heck is he going to conduct himself with other world leaders?  I read a great post the other day about eye contact in public speaking at the Communication Exchange .  I’m curious to see how Patricia reacts to the debate.

So, I am now convinced more than ever that if McCain is elected, support for individuals with special needs is going to dry up despite a promise to the contrary, and the security of the country is going to be even shakier than ever.  But that’s just me.  Maybe I just don’t really understand, like McCain repeatedly tried to convince us Obama doesn’t.  I think McCain’s the one who lacks understanding.  Your thoughts?