My Autism Insights

image from ALA website

Every year during the last week of September, the American Library Association celebrates Banned Books Week.  We all have the right to choose what we read, and I certainly want my son to have that freedom as his reading skills develop.

Books are challenged - proposed for banning - for several reasons, but some of the most common have to do with content that could be construed as offensive.  I find this ridiculous.  The world is an imperfect place, and there are things in it that are less than pretty.  There is violence and sex (which is not in itself something I would consider problematic) and foul language interspersed among the more beautiful aspects of human existence.  While I may shield my children from some of these things, at some point, they should be exposed to them.  They should be able to ask questions and look at those things critically.

Gus is an avid reader.  Gus will probably have to deal with ugliness in his lifetime: discrimination, possibly bullying, heck, as much as I don’t want to think about it, sex will be an issue at some point.  Should I put him in a bubble so that when he is confronted with confusing situations he’s completely shocked by them?  Or should I let him experience them in a safer way when we can then deconstruct them together?

For kids on the spectrum, things like social stories have been regularly used to illustrate behavior in a wide range of social situations.  This shows that reading and processing that information can be helpful in helping them understand how the world works before being confronted by situations.  I think for many kids, on and off the autism spectrum, some of the books, classics of literature, that have been consistently challenged can offer great value.

The Junie B. Jones series is #74 on the list of the Top 100 Challenged Books of this Century .  I think we’ll break out Boo! And I Mean It and re-read it this week in celebration of the freedom to read.

Image and meme from Manic Monday

Aw nuts! Just when I thought I was safe, he was up again!  This time he got up twice!  That’s what I get for rejoicing that I would have several days of not having to get up for work at 4:45 am.  That’s what I get for speaking too soon.

Aw nuts!  Just when I thought I might be able to let him eat cheese, he has a totally unfocused, hyperactive weekend filled with running off and all manner of chaotic behavior.  Was it the cheese or the weather or the moon conjunct Mercury in the 11th house?  Who knows?  But cheese is back on the banned list.

Aw nuts!  Just when I can put him in soccer he decides he wants to play football.  And really, is there any nice way to tell him that if he thinks I’m letting him play football, he’s nuts?  And double nuts, now his sister suddenly seems to think she doesn’t want to play soccer either.

Aw nuts!  I thought I could get out of making our costumes for the Halloween/birthday party this weekend, but I’ve been talked back into it. Let’s hope Pikachu’s tail survives and that Ash’s Pokeball doesn’t get lost.  I think I’ll wear a hat instead of the pink Team Rocket wig.  And that means getting all my deadlines met early so I actually have time to do this.  No pressure.

Four aw nuts! moments and it’s only Monday morning.  Have you have any aw nuts! moments 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?

As I was randomly looking netsurfing for something to blog about today, I came across an interesting site: Retrain the Brain .  I’m always on the lookout for ways to help Gus build his focus without medication so the headline “Get Kids Off Ritalin” caught my eye.  The theory behind this program is to teach Palmer method penmanship (remember that??) along with special music to develop the left (analytical/reasoning/executive function) brain.  It seems to make sense to me, but I don’t have $90 to spend on a handwriting program.

So I went and did some research on the Palmer method and found a free version of Palmer’s Penmanship Budget .  We’ve also been trying having Gus do his work with headphones on and his teacher sent home a copy of the CD they use in class.  I think another experiment is on order.

Best case scenario,  the combination of music and handwriting practice will help him.  Worst case scenario, he’ll get some extra practice in an area he needs it.  Nothing to lose.

If anyone has any experience with this theory or with that particular program, I’d love to hear more!

Four things I’m thankful for this morning:

1. I am thankful for babies.  Not mine, but friends’ babies (not to say I’m not thankful for my own, they’re just not babies anymore).  There’s nothing like a newborn to bring back those old feelings of overwhelming love that you felt for your child when he was born (or she).  We had three solid weeks of hell when Gus was born (typical of new parents perhaps), but after we learned what he needed, he was an absolute dream baby.  MM was awesome from the minute she came home - how ironic that she’s the tough one now!

2. I am thankful that Casdok at Mother of Shrek has created a new blog called Faces of Autism that features some really beautiful people.  It’s a wonderful idea and wordlessly silences so much of the negative autism talk.

3. I am thankful that Congress hasn’t yet rushed to bail out the banks because any more rash and stupid behavior by our government might just make my head explode, and who would clean up the mess?

And not a digression…

I’ve been haunted by a thought for a few days now about the DSMIV and how it needs to be updated.  I think a new category needs to be added: MADD - Maternal Attention Deficit Disorder.  I’m only half kidding.  Here is some of the criteria:

• Can’t complete a task like folding laundry without becoming distracted and consumed by no less then 3 others, one of which should take the rest of the day.  Leaves a minimum of 4 tasks incomplete for at least 2 years time at any given time.
• Can’t carry on adult conversations without losing the thread.  Easily distracted by the child hanging from pants leg or skirt.
• Forgetful about daily needs like breakfast, lunch and/or dinner.  Readily remembers and often exists on snack foods.
• Routinely stares off into space similar to someone having a petit mal seizure, but in reality is just falling asleep with eyes open.  This is one of the first symptoms of upcoming MADD and usually presents in new mothers; however, any level of sleep deprivation can trigger it.
• Sends kids to school with no lunch, backpack, jacket, shoes, or any other essential item.
• Often leaves the home in house slippers, forgetting to change into shoes.  Roaming the neighborhood in plaid pajama bottoms is a sign of advanced MADD.

These are just some of the symptoms I see on a regular basis; there are loads more.  MADD seems to be completely environmental, caused by a deadening of brain cells after extended periods of multitasking.

There is probably no medication or cure for this disorder, but perhaps, since the fed is feeling so generous these days, there could be some sort of social service agency set up for people (there are probably some dads suffering from PADD) suffering with this dreadful condition.  Respite services, regular distributions of chocolate and coffee, massages covered by health insurance, and nationwide mandatory nap times would all be good starting points.

Do you or anyone you know suffer with MADD or PADD?   How do you cope with it?  And, what are you thankful for today?

4. I am thankful that my bizarre sense of humor still helps me get through a day.

“Your assignment is to read up to page 3975…Your assignment is to read up to page 2885…Your assignment is to read up to page 5930…Your assignment is to read up to page 24…”

All night I was being given assignments that I could never possibly complete.  This is Gus’s manner of perseveration.  He repeats part of an idea and then differentiates the last bit.  He does this with questions, with knock-knock jokes, with complaints, with Pokemon speak…with just about anything.  It is one of the harder aspects of his condition for me to cope with.

I have trouble absorbing information or thinking clearly when there’s too much noise.  When the noise is the same repetitive, very loud sound over and over again, it’s all I can do some days to keep from beating my head against a wall.  When that repetition is interfering with something that needs to get done in a timely fashion, homework for instance, occasionally I do pound my head a few times, much to my head’s great annoyance.

When he starts to perseverate, I usually try to get him to stop by saying, “OK, we’re finished with that,” but it doesn’t always work.  On a day like yesterday when he gets completely consumed with the giggles over his fixation, there’s no getting through to him.  Or when he’s upset and perseverating on whatever upset him, all that can be done is to sit him in my lap, rub his back, and rock him until he calms down.

It’s certainly not the worst thing in the world.  Some days I just have less patience than others (I’m in danger of getting kicked out of the Supermom League with that admission, but the truth will out as they say).  How do you handle perseveration?

Manic Monday by: It’s a Blog Eat Blog World

So last night was different - slightly.  Instead of waking at 4, Gus woke up around 12:30.  Instead of coming into our room, he went to the bathroom, got a drink of water, and went peacefully back to bed (with a bit of guidance of course).  So what was the formula that allowed us to get a little more sleep?

Two parts of the equation changed last night.   First, he got lots of exercise late in the day.  He rode his bike and played out back with (near, around) a bunch of other children.  The other variable was that I did his therapeutic (Wilbarger)  brushing last night before bed.  Now to find out which one was the magic ingredient to our sleep formula.

We’ll have to do some testing, trying one without the other for a couple of nights.  Personally, I think that the brushing might be the key.  At least I’m hoping that’s it.  With winter fast approaching, getting Gus out in the evening will be tough.  So, here’s to a simple solution to our sleep problem!

And the irony?  He finally slept and this morning I had to be up at 4:45 for work.  The universe has a great sense of humor.

image from WP Clip-Art

Today was day 5 of the 4 a.m. wakeup saga.  Gus has been getting up, coming into our room and trying to sleep in the spare bed in there.  I’ve gotten up, removed his unwilling little body from the spare bed and steered him back to his own room.  He’s been staying in his room for about an hour and a half before coming back.  I cannot for the life of me figure out why he’s not sleeping!

First I thought he was getting that early morning chill, so I pile more blankets on.  No dice.

I thought maybe it’s what he’s eating at night.  Nope - he’s had plenty of protein and no sweets.

Replaced the night light - that made things worse.

Maybe he needs to go to bed later?  But if he needed less sleep, he wouldn’t be so exhausted during the day.

I’m out of ideas.  Any why not just let him stay in our room since we have a spare bed and all?  Because he talks to himself…loudly.  He can’t help it.  I don’t know what else to do, but I know one thing.  I am godawful tired.

I went to a baby shower today.  And as we sat around watching the new mom open all the little onesies and bibs and blankies, I remembered my own pregnancy with Gus.  In particular, I remembered a game I used to play with him while he was still in the womb - the tapping game. (The tapping game was when I would tap on my belly and he would kick back - very sensitive even in utero, I guess.)  At no time during my pregnancy did I ever imagine the path we’d end up on.

I never imagined the most awesome giggle I’d ever heard.

I never imagined how cute the word ‘tur-tle’ could sound coming from the mouth of a one year old.

I never imagined how a child so affectionate at home could be so isolated at day care.

I never imagined that a two year old would know the alphabet and would be counting.

I never imagined early intervention, ABA therapy, occupational therapy, special ed classes, medication trials, or IEP meetings.

I never imagined a seven year old who could make up Pokemon riddles that are actually funny. (What does a Pokemon say when he has a cold?  Pik-achoooo!  C’mon, that’s pretty good!)

I never imagined what an awesome and fun kid I’d be blessed with.

At the shower, we were asked to give the new parents advice or words of wisdom, and I just thought of something I should have added because there seems to be so many people who worry these days about autism:

You never know what cards you’re going to be dealt, so there’s no point in worrying, but also no point in bemoaning a hand that seems less than optimal when it’s dealt.  The cards will fall where they will, and all you can do is play it to the best of your ability.  Even a difficult hand can be a winner.

Today I’ve got one big thing to be thankful for: I finally feel like I’m on the same page, or at least in the same chapter, as Gus’s school staff.  We had a long chat last night at open school night, and the question of medication is not an issue for the time being and I think I can stop feeling so pressured about there being an agenda.  If there is, I don’t think it’s the one I was worrying about.  Everyone’s really thinking out of the box and they’re trying everything possible to help him achieve his considerable potential.  And that’s not to say he’s doing poorly at all.  Aside from having such a busy brain, he’s holding his own with much older kids.  Yes, we need to find ways to help him focus at least long enough to finish a task - so that’s the goal.  If anyone has any tricks for building focus (aside from martial arts and yoga) ideas are welcome.

So far we’ve tried: special cushions, a balance stool, bouncy ball chair, rewards, separate space to minimize distractions, and periods of movement throughout the day.

We’re going to try music, and I may suggest trying to use resistance bands in some way.

So, feel free to comment with your thankfulness and any thoughts you might have!  Have a great day!