Tuesday, June 28, 2011

Stealing From A Thief

"Rub me."

It's one of Sean's favourite phrases.

"Rub me."

It's constant.  It's everywhere.

"Rub me."

I've talked before about how Sean's OK with touch when he invites it.  And boy, does he ever invite it.  Demand is probably more like it.

Can I at least get a "please"?

"Rub me."

It's funny how this behaviour is mommy-specific.  Am I the one Sean comes to when he needs that comforting touch?  Are Dad's hands simply too rough?

Or, am I the pushover and he knows I can't resist the request to connect?

"Rub me."

The location doesn't matter.  Anywhere there's a place where Sean can be next to me, he'll ask.

Right before bed is a given.  It'll be late and I'll be doing the final walk-through, good-nights for the kids and I'll pass Sean's room.

"Mom, can you rub my arm?" and an appendage snakes its way out from under the blankets before I can even reply.

My response is always the same.

(sigh..big sigh) "Sean...."

"Oh, sorry Mom.  That's OK."

You know I have to give in.  You know it.

But could he ask a bit earlier?  And not when he's already up in his loft bed?

I'm short.  It's a stretch.

I'll rub his arm for a minute or two and then he's good for the night.

I know there will come a time when I will pass his room and not hear him call out.  Then what will I do? 

I'll miss it, that's what I'll do.

I'm lucky in the fact that Sean still wants to be by me or even sit on my lap - all 125 pounds of him. 

Of course, this mother-son bonding moment always includes the requisite "rub me" but I know that I am capturing moments at age 13 that other moms have lost long ago.

I can still hold my son's hand.

I can still put my arm around his shoulder as I walk next to him.

He still acknowledges me in public.

If Sean ever models his sister, it won't be long before he too will be pretending he doesn't know me.

You never know when that moment will be taken away.

With autism, I'm not sure if it ever will be.

Thus, for now, I will relish the times when he crushes my legs because he sat on my lap while I had one leg crossed beneath me.  I will relish the times when I am in the middle of typing an email, brushing my teeth, or finishing my dinner and he stands next to me asking to be rubbed.

And, even late at night, when I am tired and almost too short to reach, I will relish the times that he calls out through the darkness.

I will sigh....

But I will always give in.


Grateful for the extra seconds that I can steal from the world to be with my son.

For you never know when even that small moment is going to be lost....

And this time, it won't be autism but rather adolescence or adulthood, that is the thief.

Monday, June 27, 2011

Bending But Not Breaking

I think it was Mythbusters that ran a show about bulls running in a china shop.

Makes you just want to cringe, huh?

Sean has little spatial awareness.  He's constantly biffing his sisters or knocking into things when moving his hands, opening a door, or contortioning his body in order to crack his back (or neck or any other body part that he has to relieve tension from).

He also loves to touch things.  He has to run his fingers along shelves or leave racks of clothes and merchandise waving in his aftermath.

In other words, Sean is my bull.

We went to the auto museum in Volo, Illinois today.  It's a place we've been to several times before but the last of those were when Sean was safely strapped in a stroller and his arms weren't that long.

No, no trapping could be done today.  Sean and his limbs were unencumbered and my wallet was left unprotected....

The phrase "you break it, you bought it" was on endless repeat in my head.

Maybe it was the boredom of seeing car after car and hearing the accompanying stories of "That was the same car I had in high school, only green" or "That was one of the Indy pace cars in 1986," or the disinterest shown when we tried to explain to him what bench seats and window cranks were, or maybe it was the promise of the two areas of military vehicles....

Or maybe it was the billboard behind the General Lee that showed Bo and Luke Duke...and Daisy Duke in what was presented as shorts at the time....

Either way, he kept his hands to himself and I did not have to whip out the credit card to repair a broken handle on a Model T or a side mirror on a (gulp) Lotus....

Things went pretty well in between Sean's pleas of "When are we going home?"

And then we decided to go to the accompanying antique malls... all three buildings of them!

Aisle after aisle, display case after display case of breakable things and my son the bull at the ready.

"You break it, you bought it" now screamed at me at every turn.  I dared not to say it because then that would cause my son's buddy sarcastic wit to pick up a piece of coloured glass and tempt Fate.

No, I kept this little ditty to myself.

Please let us get out of here with our bank account intact....

For a couple of hours Sean explored and ran his fingers over cases that read "Please do not touch the glass."

When he squatted down to look at something on a lower shelf, I was there with my hand on his back guiding his ascent.

When he twisted, I cringed.  When he went to touch, the word "don't" flew from mine and Rich's mouths.

Oh please, oh please....

Now, I know I talk about Sean but I am not the most graceful swan in the pond either.  I have rounded corners on my kitchen countertops for a reason!

Having the clumsy chromosome should automatically ban me from antique malls of any kind - cars, shops, farm implements.

But I can't resist.  It's not like I go all the time.  It's been years since we last went history hunting.

I know that sounds nutty but it's fun to go to the shops and see the toys and objects of our youth.  It's something tangible to show to Sean and the girls. 

Visual learning and a child's innate curiosity.... that's what we were shooting for by spending those endless hours wandering today.

And then the words "You never know what you're going to find around the next corner" come out of my mouth and Rich finds an article that I will not leave behind.

A milk bottle.

I am a milkman's daughter.  Sean is the grandson, great-grandson, and great-great grandson of a milkman.

The family once owned a dairy back in the late 1800's and early 1900's.  It is an important part of our legacy that I hope someday Sean will understand.

I clutched the bottle hard and this mom-bull didn't breathe until it was safely packed into the back of our mini-minivan.

The day had finally come to an end and our wallets were lighter due only to expected expenses.

"When are we going home?" was finally answered.

And, for now, the myth of the bull - and his mom - in the china shop had been busted.

Thursday, June 23, 2011

A Walk, A Dog, And A Moment

Sorry about all the cliffhangers lately.... so much has been going on....and I have so little time to write with the kids home and all the non-scheduled stuff of summer.

OK, on to the family walk from Father's Day....

Taking family walks is something that we've always done.  Years ago - especially when the kids and dogs were younger - it was a daily thing.

Nowadays, hanging with the folks is not an activity that the kids generally want to do and Smokey would rather lounge around than mark every lawn on the block.

But hey, it was Father's Day.... let's do it.

Smokey's not up to a full trip anymore so we have taken to walking her to the corner, crossing the street, and then taking her home.  Thus, she gets her bit of exercise as well as a bunch of new lawns to sniff.  It's a win-win situation.

We started out.  She was excited.  And, as the six of us headed down the block, it reminded me of old times.

And then Smokey made a noise and stumbled.  Rich grabbed her and, thinking that she had something in her mouth, tried to pry it open.

Her tongue was blue and she had stopped breathing.

Carissa started crying and Sean took her and held her tight to him.

"Carissa, don't look.  Don't look," he shouted as he kept her wrapped in his arms, keeping her from turning around.

"Don't look."

We worked feverishly on Smokey....opening her mouth to see if there was something in there and then each of us doing mouth-to-snout.

My head was screaming, "Not today.  Not now."

Sean just held his sister and kept saying, "Don't look."

I decided to make a run for home and get the car - maybe we could get Smokey to the hospital in time.  I started to run with Ashley but Carissa wouldn't move... she was too traumatized.

Sean scooped her up and started running for home.

It was an amazing sight to see..like a soldier carrying his comrade. 

It was a moment that is snapshot into my memory.

Of course, the action ticked Carissa off.  Sean put her down and she joined the frantic dash for home.

We got to the house.  I opened the front door and instructed the older kids.

"Get Daddy's wallet and cellphone.  They're on the counter."

I buckled Ashley in her car seat while I waited for Sean and Carissa to come out.

Sean came running....

"I have Dad's wallet but I couldn't find his cellphone.  I brought the regular phone instead."

Take a second and think about that... he brought the regular phone...

What a sweet kid.

We jumped in the car and raced down the street to where Rich was leaning over Smokey laying on the sidewalk.

He went to pick her up and, just like Carissa, she squirmed to get away.

Ahhhh... she's back.


We got her home and tried as we could to settle down from the evening's events. 

Smokey eventually came around enough to drink some water and take a nap.  We knew all was back to normal when Carissa went over to give her some love and Smokey growled at her.  The two of them have a special bond and that's merely Smokey's way of talking to her.

Rich and I sat down that night to discuss the "what ifs" that are a certainty in our future.

And then we talked about Sean... and how calm and wonderful and protective he was throughout the whole ordeal.

He really was our hero.

And not even autism could steal that away from us.

Wednesday, June 22, 2011

Pop Rocks And Christmas Lists

The other day was Father's Day.

Was it difficult for me to get through seeing that this was going to be my "first" without my dad?  Yea...

And I don't discount how that might have affected my patience and mood when dealing with Sean over the last few days.

However... it was still a day to be celebrated because Rich is a really great, involved dad....

The kids made cards for their father and Sean stepped up his creative ability by using crayons on his instead of simply a #2 pencil.  Carissa made an origami football.

We kept our day pretty low-key and found ourselves wandering Woodfield - our local shopping mall.  We munched our way through various food vendors and then stopped at the kids' favourite stores.

Rich knew of a new one that had lots of "brainy" stuff and we spent a good half hour there.  Sean found separate books on the male brain and female brain.  He was absolutely fascinated.... especially when he learned approximately how much testosterone was coursing through his body.

After awhile Sean began asking what time it was and when were we going to go home.  You would think the idea of perusing stores in search of things to add to a Christmas Wish List would be fun, but Sean was still tied to some internal clock.

Before we exited the mall, we stopped at an old-fashioned candy store.  We were all enthralled (and me, grossed out) by the concept of real crickets and worms inside of lollipops but it was wonderful to explore and show the kids such things as wax soda pop bottles and buttons.

And then we found Pop Rocks....

Rich couldn't resist and bought a package for the kids.  He didn't tell them what was going to happen.  Carissa was game.  Sean was reluctant.

On the count of three they popped a handful into their mouths...

It took a second...

Carissa loved it and held her hand out for more.  Sean, however, opened his mouth and I was at the ready to either cover it to prevent him from spitting the strawberry rocks out or else holding out my hand to be the recipient of such....

And here I thought crickets and worm suckers were gross...

Sean looked at me and, whatever look I gave on my face in return, must have scared him enough to close his mouth and swallow.


We left the mall with our wallets intact and some great ideas for Christmas.  Dinner was going to be laid-back as well.... take-out from Long John Silver's.

Hey, when it's "Daddy's Choice"... it's daddy's choice....

We decided to take a walk after dinner...a true family walk that would include Smokey, our days-away from being 15 years old Shepherd/Box mix....

That did not go as planned.

Until tomorrow....

Monday, June 20, 2011

Mommy vs. The Autistic Teen-Ager, Part II

OK, here goes...

I'm much more calm now so I won't be writing "angry" but gosh, it feels so good when I do....

I basically wrote Friday's little tiff off to Sean being tired, bored, cold, etc.  I really wasn't going to make much more of it than the discussion we had in the car on the way home.

And then Saturday came and I changed my mind.

It was going to be a big deal....

It all started so innocently.  Sean was relaying a story from school.  True to his nature for pulling out bits and pieces of his life weeks or months after the fact, when it happened I don't exactly know...

I was only half paying attention to him.  I know that sounds bad but you have to understand that I cannot devote 100% of my listening power to his day-long monologues.

It's simply not possible....

My ears perked when I heard the word "jerk" come from his mouth.


I asked Sean to repeat his story - something that he is becoming increasingly impatient with me about. 

He told his story and I listened to what he was saying and filled in the lines where things got blurry.  While Sean had no first-hand knowledge of why the children were where they were, he had concocted his own assumptions.

And, being chock-full of 30 years of life experience preceding his birth, I knew he was wrong.

Telling him so would have shut him down.  Instead, I tried explaining to him other circumstances that would find the children in the predicament that they were in.  I was hoping that Sean would eventually take the logical path and come to his new - and probably more accurate - conclusion.

However, Sean's first opinion is oftentimes set in stone.

And... of course... Sean is always right.

We bantered back and forth for a while but then Sean, my autistic son turned into Sean, my teenager.

"Mom, you weren't there and you don't know what you're talking about."

Most of my friends have children older than mine and I'm always ribbing them about the phase where their children tell them they that they don't know anything.

Karma has come to bite me in my butt.

I should have anticipated this day but I was so snowed, so enthralled by my son who loved and adored me unconditionally....

I never saw the teenager lurking behind those gray eyes....

The disagreement became a full-blown, classic, parent vs. teenager stand-off.

I knew nothing and Sean knew it all.

Coupled with Friday's incident, I did know one thing for sure.

Sean - autistic or not - was a teenager.

I quickly threw the "Go to your room" card as a way to end the confrontation and for me to re-group with a new strategy....as well as to wait for Rich.

When Rich got in, we called Sean out of his room and calmly (but sometimes not so quietly) showed him the errors of his ways.

It was one thing to disagree with your mom.  It's another thing to disrespect her.

And I think that's what was so shocking for me.  Did I really believe that he would never do this to me?


With regards to punishment, we hit him where it hurts the most - the computer.  Grounded for the weekend... yes, the entire weekend.

It seemed like he understood what he did wrong.  His voice tone was actually quite sincere.

So do I believe for one second that he won't do it again?

Not a chance.

He is, after all, only 13....

Sunday, June 19, 2011

Mommy vs. The Autistic Teen-Ager, Part I

In the twenty-four hours from Friday afternoon to Saturday, I came to realize that even though autism re-routes his brain, it does not impede one simple truth in life.

Sean is a teen-ager.

And, thus, he will talk back.

I sent him to his room yesterday - not something I do all the time.  In fact, I can't remember the last time I did it.

In his mind, that was his punishment....

In my mind, it was "you better get out of my sight right now"....

I was beyond furious. 

And that whole motherly-understanding, let's step back and think about where he's coming from?  Out the door....see ya!

I was angry.

It all began Friday and what could have very easily been a perfect summer afternoon.  With nothing on the calendar and take-out pizza planned for dinner, I headed to the water park with all three kids in tow looking forward to spending hours not watching the clock from the splash zone.

And it really did go almost as perfectly as it sounded.... 

Sean and Carissa were joined by one of her friends and they did not ditch him at the first taste of freedom.  They had, after all, been warned....

"If you ditch Sean, Mommy will not only kill you but then I'll write about it as well."

Ahhhh, a fate worse than death.... becoming fodder in Mommy's blog.

The older kids checked in when they were supposed to and even "raced"  their little sister on the lazy river.

The sun was out, the weather warm, the water just cool enough to offer comfort... Like I said, a perfect summer afternoon.

Carissa's girlfriend eventually went home and I told the kids that they could have another thirty minutes or so before we would head out ourselves.

Ashley wanted to show the older ones how she could "swim" and do tricks in the big pool while holding on to the side wall.

We headed there and all was good for a few minutes.  Then Carissa wanted to go into the "whirlpool" (a circular area with its own current) and handed me her goggles to hold.  Having goggles on is against the rules in that area...

Where Carissa goes, Ashley will follow.  I asked Sean to hold Carissa's goggles while I took Ashley into the current.  He took them from my hand and placed them down in the water and let go.

Huh?  Maybe he didn't hear me.

I picked them up and again asked him to hold them for me.

He again placed them down and let them go.

OK, maybe he didn't understand.

I picked them up a third time and asked him again to hold them for me.

"Hold them" was not so mommy-politely emphasized.

Sean got a look on his face.  It was just rage...as if I had demanded him to do the impossible.

I knew he was tired.  I knew he was cold.  But all those symptoms had suddenly come on in the last few minutes and all we needed was a 15-second trip in the whirlpool.

He shot back and yelled at me - enough so that other parents in the area turned to look.

I was mortified.

This was not autism in front of me.  This was an angry, defiant teen-ager trying to one-up me and I was not going to have it.

I gave him the goggles and told him, as sternly as I could, to hold them.

I grabbed Ashley and off we went.

A few minutes later we were out of the pool and I had the kids lounge on their towels to dry off for a bit in the sun before getting back into the car.

Sean complained the entire time.

"When are we going home?"

I tried "soon."  I tried having him watch the clock.

Nothing worked.

Not until we walked out through the gate did his entire demeanor change.

Now that's the autism.....

I asked Sean in the car if it was a wise choice to argue with me.  He said no...  Knowing that he wanted to leave, did he save any time by arguing with me?  No.

Did it take longer to argue with me or to simply hold the goggles?

What would he do if it happens again?

He knew all the right answers and yet he couldn't pull them from the depths of his brain when he needed them.

Looking back, between the autism and the angry, hormonally-imbalanced, testosterone-infused teen-ager inside of him, I don't think Sean was capable at the moment that it happened to find the proper path to take.

I hope it was a learning experience... for both us.

Tomorrow I'll let you in on Part 2... and why he was sent to his room.

Friday, June 17, 2011

Nerf n Surf

The obliteration of Lego Cinderella continued late in to the evening with Carissa producing an endless stream of models and Sean's firepower growing in strength and magnitude.

Totality of destruction was his ultimate goal.

What did poor Cinderella ever do to deserve such a demise?

And...was the super huge Nerf gun really necessary?  I worried about the safety of my drywall....

Oh the joys of being a child and not a homeowner....

We did take a break to go to the local water park yesterday afternoon.  It wasn't the warmest of days and we had just under an hour before we needed to be back home so I could get ready for work.

The park is not that large and late in the afternoon it's generally only residents.  Carissa and Sean ran off together, happy to be out of mom's watchful eye.  Ashley and I hit the little kids' areas.

I always send them off with the same instructions...  No deep end.  No toilet-bowl (an inverted cone slide that dumps the kids out of the bottom).

Call me strict.  Call me overbearing.  Call me over-protective...

I don't care.

They are my kids.

They also know what time they have to check in with me.  There's a big clock on the wall of the pool house so there's no excuse.

Yesterday, as the two of them were walking past the baby pool, I heard my name being called.  I've lived in this town my whole life so knowing someone at the water park is not unusual.

I looked up to see who had summoned me only to see my son waving from the walkway.

Oh, that's right.  I forgot.

Sean calls me "Frances" in public.

It startles most people when he does that.  Whether it's at a Boy Scout event or at the grocery store, I'll hear "Frances" ring out.

Some might think I'm offended or disrespected but Sean actually has an extremely logical reason for doing so.

According to him, if he calls out "Mom" then a bunch of people turn.  "Frances" is meant only for me.

He's been doing it for as long as I can remember.

Now, is that absolutely clever or does Sean secretly believe that he's putting one over on me?

Does that make him feel cool?

I don't know but I am amused by his little habit.

After Sean called my name, we did our version of sign language to communicate that they had ten minutes left.

Which is another topic to discuss another day.... counting down so Sean knows there's a transition coming.

And then off they went... Happy to have the freedom.  Happy to have the sun out and the water be not so cold.

Would I send Sean off with his friends?  No.  But with Carissa, my future-mom-in-training, I know she'll keep him in line.

More importantly, though, is the fact that Carissa will not hesitate to nark on him should he disobey my rules.

Ahhh... my little grasshopper.  I have trained her well....

Thursday, June 16, 2011

Where's The White Knight When You Need Him?


Does executing a Lego Cinderella using a flying, screaming monkey (and cow!), constitute "cooperative play"?

Oh, no.  Poor Cinderella.  Looks like Nerf guns are in your future....

Today all three children are playing together - the perfect world which undoubtedly will result in the perfect storm. 

The only question that remains is who will cry first?

The concept of "cooperative play" has always been one that puzzled me.  Sean is the only boy in the family.  Do I expect him to sit with the girls and be Ken on the Barbie Dreamboat?  Do I expect him to play Prince Charming when the girls are playing Sparkling Princesses?

No... I don't.

He's a boy and though he's grown up in a Polly Pocket world, he is all testosterone.

One of my favourite moments when he was growing up occurred when Carissa was playing with her My Little Pony Castle.  It came with a hot air balloon... supposedly for gently floating over some imaginary Pony Land.

I doubt the manufacturers planned it as an escape pod as Sean's tank bore down upon the unsuspecting, innocent ponies.

Whenever I am asked about the ultra-huge milestone of cooperative play by some professional, I always tell that story.

Seriously, they're siblings... how cooperative can I expect them to be?

This summer we're going to try, for lack of another name, some "play dates" for Sean.  The lucky recipient of an invitation to Sean's domain will be a boy from town the same age.

Can I call him Sean's "friend"?  Not exactly.

Sean has "known" this boy for a couple of years and yet neither knows his name nor his face.

Will they play catch out in the backyard?  Will they talk interactively or will Sean dominate the pseudo-conversation with his monologues and the other boy simply tune him out?

Or, will they sit side-by-side at the desk while one watches the other capture the enemy in a single-player computer game?

Can two kids playing a 2-person, interactive video game really be defined as cooperatively playing?

Tough question, huh?

Or at least it is for me.

For now, my children fit the definition... even if it is at the peril of poor Cinderella.

Tuesday, June 14, 2011

Summer Sun And No Routine To Be Found

Yesterday was the long awaited first day of summer vacation.  So anticipated... so looked-forward to...

Then why was I complaining about not having a moment to myself on my Facebook page??

Any first - even a good first such as a trip to Six Flags amusement park or the first day of summer break - is fraught with unknowns.

What time should they be up?  Will they change their breakfast routine?  What about having to run necessary errands like grocery shopping?

How will Sean adjust?

Better yet, what the heck will he do with all that free time?

Knowing that Sean barely holds himself together to get through the final weeks of school, we have been adament about keeping him out of summer school and scheduled activities.

Not even gymnastics is on the calendar.

Therapy barely makes the grade.

Overall, we try to stay low-key and go with the flow of how the day is going.

Yesterday was not going well... or, at least, the morning wasn't.

Sean loves to get up before everyone else in the household.  Somehow in the DNA mix, he got the only early-riser gene.

Once he was old enough to pour his own cereal, I was content to lay in bed half-asleep keeping tabs on his whereabouts in the house by the noises that were being made or the dogs following him around. 

After we got the computer, there was only one place to find him... semi-slumped over the desk, intent on whatever game he was playing.

Call me a bad mother but I do not limit my children's computer time.  They rarely sit on their butts long enough to watch a television show all the way through and books that they are reading are constantly strewn about the house.

And, of course, once the weather breaks, I kick them out on a regular basis to the ultimate unknown for children of this generation... the backyard.

Thus, computer time is not something that we generally do battle over.

But when I say it's time to get off, you better get off.

That's when yesterday's meltdown happened....

I suspected Sean had been playing his new video game for about 3 hours.  It's a strategy type and takes a very long time on our ancient computer to set-up and load.

Ashley was begging for her siblings to play with her.

"Sean, it's time to play with Ashley."

No harsh words, no angry tones... just a simple statement.

The tears were instantaneous and the sobs were heartfelt.  He claimed he had been working  hard to attain the next level and he was almost there.

I thought about telling him that I really didn't care... but you know.... I did.

And it was, after all, the first day of summer break.

Did I really want to start off the summer this way?

I told him he could finish it and within five minutes he was done. 

Did he play with Ashley more than annoy her?  Probably not but at least he tried.

I eventually sent all three of them outside so I could have a moment to myself... to think... to pee.  Within moments they were back inside complaining.

Again, I opened the door and introduced them to the sun and the grass... things that in the Chicago area you only see a few months of the year. 

And then I introduced them to the garden hose...

Let the fun and a new routine begin and let's hope the meltdowns will be few...

Welcome to Summer!

Monday, June 13, 2011

Letting Go And Enjoying The View

Sean was on top of the world yesterday.

Ok... so it was only the roof of our one-story house but close enough...

It was time to clean the gutters, something that is becoming more than a twice-a-year project as the winds swirl and drop the entire neighbourhood's batch of whirly-birds/helicopters and tree buds onto our rooftop and they eventually wind their way into our gutters.


It's a disgusting, dirty, smelly job most of the time and yesterday's was no exception.

Usually, Rich will head up to the roof by himself and dig in with rubber gloves, flipping the goop over the side and into an awaiting garbage can.

And generally, I am the one helping to schlep the garbage can along as he works his way around the perimeter of the house.

Ahhh, but no more....

I have a teen-ager!!

I have a son!!

I have Sean!!

And it's time that he takes over more of the man-chores around the house than simply picking up after Smokey.

I decided to finally plant what was left of my sad, pathetic, withered by record heat, flats of flowers with the girls, comforting Ashley as any little speck of dirt or splash of water landed on her princess flip-flops.

Sean and Rich did the man work.


Then, as things were getting cleaned up, Sean asked to go on the roof.  He's asked before but I never let him get more than a few steps up the ladder.  I could say that it was mostly due to my worrying about him not paying attention and taking a head-first dive off of the shingles or daring himself to step on the gutters to see if they would hold his weight.

I could save face and say all that, but I won't...

I'm sure it was true years ago but geesh, he's 13!

Fact is, I'm afraid of heights.  And just like when I'm cold I'm telling them to put on a sweater, if I'm afraid then they should darn well be, too!

But he wasn't.

You should have seen his face as he walked around the roof with Rich.  His dad held his hand for a moment and then let go.

Oh, I could have died....

But I didn't.

Sean loved it up there.  He walked around.  He listened to Rich as he explained what this vent or that vent was for.

And then he sat down and enjoyed the view.  He enjoyed the quiet and the warmth of the shingles.

We took pictures - lots of them.

With the apron strings/umbilical cord nearly shredded, Carissa asked for her turn.

What the heck....

So the two oldest kids had their time with their dad, taking in a moment that will be unique to the three of them.

And I stayed below with my feet firmly planted on the ground, Ashley lovingly lashed to my side with the remnants of the umbilical cord, and camera in hand capturing another first for the kids.

Could it have come years sooner if Sean had not been autistic?

Sure.  After all, Carissa is two years younger than Sean.

But Sunday, seeing Sean and his dad traversing the rooftop, I think the timing was absolutely perfect.

Saturday, June 11, 2011

To Touch Or Not To Touch? That Is The Question....

OK, where do I begin?

First of all, I want to explain my meaning - and Sean's meaning - of being restrained.

It doesn't have to do with anything like straps or chairs or anything like that.

For us, being restrained either means being pulled away from the situation and/or getting put into one of those certified holds. 

At no time was it ever physically harmful to Sean.  For him, and his issues, it really had to do with people touching him when he really didn't want to be touched.

'Nuf said, OK?

But that bring me to the subject of touching our special needs child...

Sean was a cuddler when he was little.  He'd snuggle up and wind his little hand up my sleeve and pinch my elbow when he was younger.

I remember when he was in school - and much smaller! - the bell would ring and out ran Sean.  I would scoop him up and twirl him around.

It was a special moment for us....

One time,  a "professional" told me that I was treating him like a baby and that maybe a high five would be better.

I never followed that advice.  He's my son and if I want to pick him up and he enjoys it, then I will.  Besides, at 125 pounds and as tall as me, the days of picking him up have long since passed.

I don't believe for one moment that our after-school ritual caused Sean severe psychological harm thus securing him a place on some reality television and or advice show...

When he was younger Sean was open to hugs and kisses.  Then, as he grew older, touch seemed to be introduced at your own risk.

If he was sitting somewhere and you would go to touch his shoulder, give him a hug, or kiss him on the head, oftentimes an arm or other body part would come flying at you.  At first I thought it was the surprise aspect of it, but even now he bristles at touch that is initiated by someone other than him.

Sean simply wants to be touched when he wants to be touched.

I never kiss his head without putting my hand on it first - creating a barrier just in case his skull is thinking about coming into contact with my front teeth.  It's sad but a reality.

Even when he knows he's going to get touched... like when seeing the chiropractor... he stiffens up and can't relax.  We've even take him for a few massages to help ease the tension in his muscles.

He's always asking for his back or his arm to be rubbed.  In fact, just now, he came up to me after getting his haircut and asked me to scratch his head.

He craves touch but on his own terms.

Still, his poor muscles never seem to truly relax.  They are in a constant fight-or-flight mode.

I wish I knew the key.  It seems unfair to not to enjoy a hug or someone's touch.

Especially when he was so receptive before....

But then again, he is who he is.  He still pinches my elbow to calm himself.  He still sits in my lap sometimes - and usually the words "rub my back" are soon to follow.

And, with 8th grade and girls on the near horizon, should I be all that broken up that he doesn't enjoy touching?

Seriously, now....

Sometimes that can be a good thing!

Thursday, June 9, 2011

Hoping To Lose The Key

"Don't  *&#@ it up."

Those were the last words I spoke to Sean before we left the house yesterday for the last day at his day program.

Nice mom, huh?

Boy was I mad....


Luckily, he dropped the subject and I had the car ride to the junior high to get a grip on where he was in his head.

What started it?

Sean brought up the restraining incidents... again.

O..M..G.. how many times is he going to bring up something that happened years ago?  At his day program it occurred maybe two... maybe three times.  And it could have been as long as three years ago.

Get over it...

I know.  I know.  I can't be that callous.  But yesterday morning I was livid not because he was bringing up the subject but what he said afterwards.  I understand that he was traumatized.  I get it.  And hey, if reliving it somehow heals the wound then by all means, talk it out.

But Sean added a new element to the conversation.  He brought up revenge.

He's always been about being fair but he skews it to give him a free pass to wrong someone who has wronged him.

Not a good thing....

So yesterday when he brought up the restraining he said that he always promised himself that one day he would get back at them and beat the crap out of them.

He would have the final say.

I could not contain myself.  Don't pull this on the last day you'll be there.  Don't do something so stupid.

Keep your head down and don't even think about.

In other words, don't *&#@ it up.

We walked out of the house and, normal as can be, chit-chatted in the car.   Sean seemed to have snapped out of his revenge-mode faster than I could back out of the driveway.


How could he??  Is he really??  I hope not....

I spent the rest of the day willing him to get through the day without landing in trouble and blowing everything that he had worked for... everything that we had worked for.  Just get through.  Just get through.

Relief is not the word I had when the door burst open and Sean announced his arrival and dropped his backpack.

He had made it.

He closed the door and shut out five years in a therapeutic day school, bus rides, levels, point sheets... and hopefully, painful memories of being restrained.


But will they remain locked away?

Wednesday, June 8, 2011

Earning The Golden Ticket

The last two granola bars have been packed.

Today is Sean's final full day of school.  He still has two half days left but other than having to wake up early, I can hardly find fault in those...

Today is a huge day, five years in the making.  You see, Sean's day school was meant only to be a transition.  He would be there for a year or so, learn coping strategies while maturing a bit, and then gradually move back to his home school. 

I was hopeful at first.  Sean's a smart kid.  He'll get it....

Then, as the years passed, I can't say I lost hope in a hopelessness kind of sense.  I guess I simply resigned myself to the situation.

Ugh.. that sounds so depressing!

His day school assigns the kids to levels according to the goals that they on a daily basis.  After so many days on Level 1 attaining all the goals - or a good majority of them - the child would move up to Level 2.

Level 4 was Willy Wonka's Golden Ticket.... it meant transitioning back to your home school was in the near future.

But as fast as you could move up the levels, you could also move down them as well.  And quickly. 

One major meltdown, one really, really off day, and you could lose your Wonka Gobstopper and be right back to Level 1.

Sean would get so close.  He would be on Level 4 and dreams of transition would dance in our heads.  Last fall those dreams were being spoken about.  District officials were beginning to talk.

And then on the third day of school, Sean had a bad day.  And then he had another.  And then another.

It was a bad week and we were devastated.

And angry.

And frustrated.

You can't blame every unsuitable behaviour or poor choice on autism.  Sometimes, especially when they're an adolescent, it simply is what it is... them being naughty.

Sean's first week was a combination of anxiety over beginning a new school year, not listening to adults, and making some extremely ill choices.

He had to go down in level.  There was simply no alternative. 

Sean learned a tough lesson that week.  He couldn't blame his decent on anyone but himself.  The anxiety was one thing.  That could be dealt with and understood.  But his other behaviours that week, could not.

Therefore, down he went. 

Kiss running on the mainstream cross country team - for which he had trained all summer - good bye.

Kiss transitioning in the fall good bye.

And, if he kept it up, kiss any hope of getting out of there before graduation - a requirement to go to the local high school - good bye as well.

So much of his future was beginning to hinge on his behaviour, his choices. 

He had to learn.  He had to cope.  He had to find that control within himself.  He had to learn to take responsibility.

And, slowly, eventually, he did.

Sean finally got that magical Wonka ticket and walked through those gates in January.  It was scary, exciting.  A new world.

He has had his moments but he's been doing well.  The original two classes a day at the junior high has grown into four.

We went into May's meeting with school and district personnel hoping for a 5th or 6th period to be added sometime during  the fall term.  One of those would be lunch... Sean's equivalent of being left alone in the TV room in WonkaLand.

All he wants is the freedom that is offered in a room filled with his peers.

And now he'll get it.  Sean will be full-time at the junior high come August.  He will have a resource period to check in with his OT for his fine motor skills and for assistance in anything that needs assisting.

Will his behaviour be spot on?  No.  Will every choice be thoroughly played out to its consequence before being acted out?  No.

But I do hope that time helps.  I do hope that the understanding and compassion continue.

And, most of all, I do hope that Sean continues to learn.

His future is not dependent upon autism, nor is it determined by it.   His future is dependent upon him.

While he says good-bye to the safe world of his day program and ventures out, at some point he will misstep, turn on the bubble machine.

But, like Charlie, Sean is a good boy.  He will give back during his lifetime much more than a gobstopper. 

And, in turn, we should give him the world, the keys to Wonka's factory,  because he deserves it.


Monday, June 6, 2011

Melting Down And Counting Down

I never know where to start anymore.  It's as if I have Senior-itis and all I can concentrate on is how many more granola bars I'll need to pack for school lunches...

I'm now down to four.

The last week of school has finally arrived.  It's been tough and we are all exhausted.  I'm not yet counting hours but that time will come.

Sean and I should be at our last Boy Scout meeting for the year tonight but alas, we are not.  Or, at least, he isn't.  I did go for a bit to check in.  Our quarterly ceremony is next week during which the boys get the badges that they've earned and advance in rank.

Sean had a small meltdown this evening before dinner.  He came home from school super-stressed.  Again, nothing had gone wrong during the day.  He was simply very tightly wound.  You could see it in his face and hear it in his voice.  All of his mannerisms were off.

He said that it felt like the teachers were trying to shove a bunch of work into the final days.  They could be.  I remember times like that in college.  Then again, he could have little patience left for schoolwork, regardless of the amount.

I told him that I thought he should stay home from the scout meeting tonight.  I thought he needed a chance to relax and unwind. 

Sean said something about needing to go so he could work on a merit badge.  Our troop is trying to get the boys to earn at least one merit badge for each quarterly ceremony.  Sean has yet to earn his.  When we realized he was going to be short of requirements this time around, we thought it would be better to not achieve it then to rush it through.  I think the leaders understand all of the changes and challenges that Sean has faced these last few months and won't hold him to it.

Earning a merit badge pales in comparison to what Sean has achieved in his life since January.

Surely, no one would hold him accountable given the circumstances.

However, Sean has his own set of standards and has his own, although this time mistaken, timeline.

He completely freaked when I told him that the ceremony was next week and that it was impossible to get through his requirements AND get them approved by a counselor AND get them in to the troop in time for the ceremony.  It wasn't possible a few weeks ago and it wasn't possible now.  End of story.

"But Mom, you said the Court of Honor was in two weeks!"

"Yes, Sean.  That was the other day.  Now it's one week."

"But Mom, I'm required to get at least one."

"Sean, it's going to be OK.  You're going to earn a bunch this summer and go up in rank in September.  It's going to be OK."

The fact that he calmed down so quickly could have been due to any number of things.  He could have been relieved to not have to go to scouts and instead, get to stay home and play on the computer.  His brain could have moved on to another, more pressing, subject such as how to win Attack at school with only two lunch periods left.  Or, the meltdown could have had nothing to do with anything really and he merely needed to vent about something and chose scouting.

I'm choosing all of the above.

This particular time in the school year is always tough.  And, I think, being at two schools and the decision to leave one of them, has only added to his stress.

Most of the kids in his day program take a week off and then continue on with summer school.  It's not really an ending, although this year Sean has had to deal with a couple of the kids graduating from his multi-grade classroom.

The energy is probably much more charged at the junior high.  School's out!!  Woo Hoo!!!  Could the kids be more rambunctious?  Could the chaos created by a student body nine times larger than Sean's day program be magnified in these last waning days of academia?

Maybe Sean doesn't know how to react.  Maybe he simply needs time to absorb all that is going on.

Therefore, we'll keep it quiet this week.  Or, as quiet as you can with therapy, work, and two other kids running about the house.

He'll get through it.  I know he will.

Besides, he only has 20 hours left....

Friday, June 3, 2011

Meltdowns And Memories

Sean really needed the meltdown from the other day....

Isn't that ironic?  And, actually, quite like the rest of us?  For me, there is nothing like a good cry to release the internal stresses of my life.  Some people yell.  Others may run mile after mile.

Sean melts down.

He holds himself together.  He endures the schedule changes, the noise, the chaos, the occasionally not-so-great night's sleep, eventually falls completely apart, and then he's fine.

Sean took to his room that night and has stayed fairly quiet since then.  Of course, we are doing everything we can here to keep things on the even keel to help him weather the latest.

If he wants to go outside to swing in the morning before going to school... have at it.

More computer time?  Sure.

Unless it's absolutely necessary, we're not leaving the house once he comes home from school.  He needs that down time and we have to give it to him.

I'm not entirely convinced that his meltdown was due to us signing his transfer papers five years ago.  Was he reliving the restraining incident during his crisis?  Absolutely.  It was heart-wrenching to see his eyes so filled with pain.

But I think a small part of him is scared.

I know I am.

Going full-time to the junior high means so many more things to work their way through his brain.  A second locker combination for gym, changing into and out of the gym uniform, navigating a cafeteria filled with a hundred or more kids, morning books, afternoon supplies...  So much to think about.  So much to plan and pre-teach.

I wonder if Sean is thinking the same thing?

He could also be worried about leaving his current school.  He's been in a self-contained classroom for five years.  The student-staff ratio is sometimes as low as 2 to 1.  It's been an incredible experience.  They have worked with Sean and adapted to practically all of his needs.

Take for example, walking in the hallway.

Sean, either due to his lack of spatial awareness or simply not paying attention, could not walk in a single-file line.

For years teachers tried everything.  "Put your arms out and make sure they don't touch the person in front of you."  "Let's walk in the front of the line."  "Let's walk in the back of the line."  I think eventually it came down to him walking on the other side of the hallway or beside his teacher.

Sean was never reprimanded for not being able to be in line.  It was not made out to be some must-learn life skill.  The school simply felt they had bigger issues to battle.

And so it was for years.  They tried different things but always in a laid-back fashion.

Then one day the kids lined up and so did Sean.  The teacher realized it but kept quiet.  She wanted to see what happened.

Sean walked in line.  He got it.  Finally.

Just in time to go to junior high where lines practically do not exist.  Hey, he'll be great for graduation!

That's how it was with his old day program.  One tiny step at a time, coaxing along the way but always cognisant of how Sean was coping.

The staff has become like family.  Sean's small set of classmates...a comfort after the countless numbers of faces passing him in the halls of the large junior high.

I have no doubt that he will miss his old school.  He will miss having every staff member know him.  He will miss the close circle of peers.  He will miss the many individual adjustments that the school made in order for him to be successful.

Even though he says he won't... he will.

I'm sure a ton of emotions are flooding through him right now.... success, saying good-bye, moving on, moving into a world filled with unknowns, anxiety over possible failure.

Imagine how we would feel....

So the meltdown the other day was completely within reason and not entirely unforeseeable.

Today is his last full Friday.  He's almost there. 

Just one more step, Sean.  Just one more.

Wednesday, June 1, 2011

Fight or Flight School

What was that Kenny Loggins tune from Top Gun?  Something about the "danger zone"?

Oh, we are in it....

I had said earlier that Sean seemed off.  He came home today in the same type of mood.  Nothing was good.  Nothing was bad.  It was just something.

He asked to go outside to swing on the swings for a bit.  I said yes, of course.  Swinging has always had a calming effect on him.  It was actually nice outside after the rain finished so I expected him to be out there for some time.

Sean came in within a minute or two.

I was in the kitchen and he was standing at the counter.

Out of the blue he starts talking about the time five years ago when he left his home school and was enrolled in the the therapeutic day school that he attends now. 

It happened during his 2nd grade year.  It was ugly.  Not kind of ugly.  Really ugly.

Sean was angry, frustrated.  He didn't have the communication or coping skills needed to get through a day in a mainstream environment.  He would cry and when people tried to calm him, he'd lash out.  All he wanted was quiet and to be left alone.

He needed the smaller classroom sizes, the extra staff, the breaks, the understanding. 

And he also needed to be restrained if the situation called for it.

That's what he was talking about at the kitchen counter.  He remembers being restrained - both at his home school and at the day program.

Even though it's been years since he's been restrained, it's a memory that he can live through as if it was happening now.

Sean is angry with us for signing the transfer papers for the program.  He said we were exploiting him....we had no right.

I could see the hurt in his eyes.  It was deep.

And then he lost it.  The tears came and the pain from his past came screaming out.

I went over and hugged him, held him tight.  I couldn't erase those years.  I couldn't make him forget.  And I couldn't heal him either.

I tried telling him about how far he's come...reminding him of how hard he's worked and all that he's accomplished.

He stopped crying, wiped his eyes and went to his room.  For the rest of the evening - aside from telling us in minute detail all the strategies he has for winning Attack at school before the year's end next week - Sean was quieter than usual.  He played his computer games and hardly a peep was heard from him.

He's in bed now.  Hopefully, sleeping soundly.

I don't know what brought on today's episode.  Could it be the end-of-the-year stresses of keeping it all together for one final week...what I call the "Danger Zone"?  Could it be that he's afraid of what lies ahead going full-time at the junior high?  Or, could it be that something happened at school or at home and it triggered the memory?

It really could be anything - and Sean, most likely, doesn't even know himself.

But what I do know is this....

Sean has 6 full days and two half days of school left.  I will do anything and everything I have to in order to get him through these last two weeks.

Every pilot has someone looking out for him or her.  Sean has me.

And I'll make sure we get through this thing together.