When losing feels like winning

Joe recently learned about betting.  Now he wants to bet us about everything.

"I'll bet you a quarter that our team wins tonight."
"I'll bet you a quarter that Diesel is sleeping on my chair again."

Thank goodness his favorite bet is a quarter!

Last Sunday after we dropped Alan off at camp, he says to me, "I'll bet you a quarter that Alan likes camp."  Oh man, you have no idea how much I wanted to lose this bet!

Drop off was ROUGH!

Dad stayed with Alan and I went to go sign him in and drop off medicines.  The medicine line was ridiculous.  150 special needs folks and only four nurses signing in medicines.  And they had to rewrite every single one.  We got there on the early end of drop off and I stood in line for at least 20 minutes and probably closer to 30.

Meanwhile Alan was crying like his heart was breaking.  He tried to get back in the car and DH locked him out of it.  Then they walked him over to look at the pool and when he expressed an interest in swimming, the counselor took him back to the cabin to put on trunks.  Then DH moves the car and hides.

Poor guy.  Later he told me that he had the harder job (I agree) but that it was just as well we split up like we did because he probably would have snapped and yelled at someone in the medicine line.

When we left Alan was only sniffling and there had been no headbutting or hitting.  His tears are killers though.  He just looks so freaking miserable.

Meanwhile all I can do is wonder what he is thinking.  Does he think we abandoned him?  Does he understand enough to know that we will come back and this isn't forever?

Monday night was so weird.  Joe was working.  DH gets home and says, "What do you want to do?  Go out for dinner?  See a movie?"  Wow.  No sitter required.  We almost had an empty nest.  We could get used to this.  Nope.  We won't.

Several times throughout the week we started and looked around frantically for Alan.  It was definitely weirdly quiet.  For a kid that is essentially non-verbal he is noisy!

It was a productive week.  I got Alan's room painted (I hate painting) and we took Joe out for steaks -- something he loves but of course Captain Picky won't touch.

Alan's one on one counselor was wonderful and communicated well with me -- we exchanged over 100 texts over the course of five days!  She even got him to shower (something we've been wanting for forever) and we were able to carry it over for the last two nights.  He still doesn't like them, but we are at least hopeful!

By Thursday, I was missing my Bug something fierce, though.

It turns out a good time was had by all.

After we got home last night, Joe comes in to see me.  "So did he have a good time at camp?"

Yes, he did and I was so happy to lose this bet that I paid him double!

Night and Day

My boyz are as different as night and day.  We've all heard the expression ad nauseum "If you've met one person with autism, you've met one person with autism." but even the most jaded person in the world would think that two boyz from the same gene pool, raised in the same environment with the same diagnosis would have more things in common than not in common.

I'm here to provide evidence to the contrary.

Both my boys have communication problems.  Joe didn't talk at all until he was almost 3 and then started spouting words and phrases from books at a phenomenal pace although comprehension is still an issue at 18.  Alan, on the other hand, seemed to develop typically until he was about 2 and then rapidly regressed and seemed to stagnate.  Grrrrr  Just when you think you have this autism figured out, the second one is completely different from the first. 

What was difficult for Joe (potty training) happened almost overnight with Alan.

What worked so well for Joe (ABA) had almost no effect on Alan -- he just ritualized things. 

Alan goes barefoot every chance he gets (even in this picture from last December when there is still ice in the raingauge) but Joe puts on his sandals every time he needs to step on the grass because of his sensitivity issues.

Joe always has something in his hands in his toddler pictures (usually several somethings) but Alan always wanted his hands free to climb.

Joe has always been sound sensitive.  He hated fire alarms at school, he used to wear noise muffling headphones for watching fireworks (and we weren't that close) and he still wears them for cutting the grass.  Alan likes making the most piercing noises known to man but doesn't seem to care what sort of noises are in the environment.

Even for things that they both loved (their wooden toy trains) they played completely differently.  Joe would carry around a handful most of the time but when he played trains, it was to run them along the track stimming out of the corner of his eye.  Alan likes to make very long continuous trains and crash them off a high surface.

Joe is unbelievably gentle for a boy.  He doesn't like violence and has only lashed out physically a handful of times.  Alan came out of the crib headbutting.  I have a very vivid memory of telling him no about something when he was barely walking and him turning around and headbutting Joe in the back.


They both love swimming, but Alan loves the ocean and waves and Joe is skittish of critters and prefers swimming pools and his mask.

Joe used echolalia and scripting to start talking.  He would take a phrase he had heard in a book or a movie and apply it to a different situation to come up with an expression that was most times appropriate.  Alan just scripts for the stim.

Alan is a complete daredevil and climbs to the top of everything while Joe is a little bit scared of heights.

Alan has been known to elope on more than one occasion (going so far as to attempt to walk to his aunt's house 5 miles away), but Joe just leaves the situation and then comes back when he has calmed down.

Joe is a complete pack rat while Alan loves to "clean up" and has thrown out numerous things we then had to fetch out of the trash including silverware and unwanted toys.

Joe has always loved crafts of all sorts, but paper/pencil activities are torture for Alan.

Joe always slept like the dead but Alan had a more difficult time falling asleep and tended to wake up at first light.  This has improved since he has become a teenager but he is still our usual weekend alarm clock.  Trust me, it is impossible to sleep through a 160 lb. kid back flipping out of bed on the floor above you!

Alan is very motivated by "task completion".  At school, they frequently use finishing a job as the reward for doing the job itself.  We joke that this is the reason Alan gets in the ocean and starts swimming for the horizon -- he has to get to the other side!  Joe on the other hand, loves to start projects ("I am going to type all the numbers from 1 to 1,000,000.") and a few days later he loses his motivation. 

So for those people out there that do not like the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) changes to the definition of autism, I would like to point out that I think in many ways this will be more accurate.  Under the DSM-IV, both my boyz are "PDD-NOS".  This does not even begin to cover their complex differences.  At least with DSM-5 they will be level 1 (Joe) and level 3 (Alan).

Rob Growski of Lost and Tired said, "The most dangerous mistake in Autism is generalization."  He's got that right!

IEP's ... the Good, the Bad and the Ugly!

Individualized Education Plans (or IEPs) are something every parent of a special needs child has attended.  Being in my 26th year of special education parenting (15 for Joe and 11 for Alan), I have attended more IEPs than I care to remember.  Some are good, some are hideous, many are frustrating and some are a complete waste of time. Today's was Joe's transition to adulthood/post secondary education.  It was both good and frustrating. 

The SLP (Speech Language Pathologist) brought up the fact that when Joe gives an answer to a question and it isn't exactly the correct answer, he struggles with constructive criticism.  OK, to be fair, NO ONE likes constructive criticism, but it is a fact of life.  When Joe was younger, his response when he was angry was to take off his glasses.  I think this originated from the girl in A Series of Unfortunate Events tying back her hair when she was inventing, but I am not positive.  He doesn't always do that these days.  Most of the time he just goes to the bathroom.  This is actually better as it gives him a chance to get away from the situation and calm himself down.  Unfortunately, this might interfere with competitive employment (our post-secondary goal) as he can't exactly run off from his boss to use the restroom every time he is told how he could improve. 

Still, overall, Joe's outlook is so much brighter than Alan's that sometimes it is frustrating.  While I spend a lot of time wondering if Alan will have to be institutionalized, I only have to worry whether or not we will have to support Joe for the rest of his life.  

One of the worst IEPs I ever attended was when Alan was in first grade.  First a little background as to the events proceeding the IEP in question.  

Alan was always a big "headbutt-er" and he got away from his aide one day in October and went up to a gen ed teacher and headbutted her.  When I got the phone call later in the day, all I was told was that he had "headbutted a pregnant teacher".  What is everyone's first thought when they hear that phrase?  It is of a child (at the exact right height) running up to a woman 6 months or more pregnant and slamming his very hard head into her stomach, right?  I was appalled and horrified!!   It wasn't like this was a new behavior!!  Although there was no Behavior Intervention Plan at the time.  I was still a bit upset that he received a one day out of school suspension and a four day in school suspension -- not about the in school portion, mind you, only about the out of school portion.  First off, this happened more than 24 hours after the actual incident.  These kids need instantaneous feedback.  Second, a day off school is a reward.  Why in the world do they give the child misbehaving a day off school?!?!?

The actual IEP was even more frustrating.  Luckily my DH showed up and did the larger portion of the debate as I would have been too upset.  This is the approximate conversation:

DH:  Why did Alan get an out of school suspension for this incident?

Principal:  We need to keep our teachers safe.

DH:  So why give him an OOS suspension when that is essentially a reward for him?

Principal:  Well we need to keep our teachers safe.

DH:  I understand that but how is reinforcing a behavior going to help keep your teachers safe?

Principal:  We have these laws and rules to keep our teachers safe.

<sigh>

I am just glad I had left the IEP by this point, or I might have headbutted someone myself!  The end result was the principal decided that Alan was never to leave the autism room unless he was accompanied by two aides.  They didn't hire another aide so what would you do as a teacher?  Send Alan into a classroom with two aides and keep two students back in the autism room or send two students out with individual aides and keep Alan back in the autism room?  Needless to say, Alan didn't get into gen ed much after that and we switched schools at the end of that year.

As a postscript on this whole event, I found out at the Winter Party that the teacher in question was headbutted on the hip and that she had only just found out she was pregnant!!  Not only could Alan probably have headbutted her on the stomach without hurting her, but it wasn't like he was targeting the pregnant lady -- which was the impression I received the entire time we were discussing the incident during the IEP!

Keeping that fun IEP in mind made today's seem like a dream!  Really how bad is it that Joe has to leave a meeting to go to the bathroom?  Not so bad at all ....