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.

Ugh....

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.

Sweet!!!

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.

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!

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....

Fuming.

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.

Unbelievable...

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.

Hopefully....

But will they remain locked away?

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.


 

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....

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.

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.