Thursday, March 31, 2011

Christmas On The Last Day Of March

As I went to sleep last night, one of my final thoughts was "Ok World, what did you do with my autistic kid?"

No need for an Amber Alert.  I knew where he was... right in the next room, semi-asleep.

But what he did yesterday was extraordinary in my view.  In fact, the whole day was filled with moments of astonishment.

It all started before breakfast.  My normally t-shirt wearing, always complaining of being cold son came out of his room dressed in the usual dragging a sweatshirt along the floor.


He even put it on!!!

Double wow.

At music therapy Sean was absolutely fabulous.  He used a new instrument that took some time for him to figure out.  Sean did it with nary a single sign of frustration. 

He was even communicating appropriately - laughing and joking with Mr. Craig - instead of sticking to his agenda of interests and monologues. 

More surprising was the fact that this great session occurred on what was not the original day.  It had been rescheduled - something that we almost never do.  We would rather cancel than reschedule and change Sean's routine.  Rescheduling has proven to be somewhat disastrous in the past.

But today was turning out to be something special....

Then, at dinner - McDonalds in the lobby where I work in the evening - Sean finished telling us about his day at school.  Of course, snippets had been leaked during the last few hours.  Now it all made sense.

Sean's class at the junior high had been instructed to go to the school library and each child was to check out a biography as part of an assignment.  It was no surprise to learn that Sean's "fast walking" meant that he was first at the destination.  What he did next did surprise me...  He's only been in the school library a few times before.  Thus, he's not at all familiar with the layout.

Sean went to the front desk and asked where the biographies were.

Can you believe that???  That is beyond amazing!!  I am so proud of him!!!

Even though he was - and still is - a bit confused as to why a certain aisle was labeled "Gla - I"... he was able to find his book and check it out.

Wow.  Triple wow.

I won't even go into my almost-teenage son cleaning his room - and not just shoving everything in the closet, in the drawers or under his bed but actual use of hangers!!  He stacked.  He grouped.  He put away....

He claims he was bored and didn't have anything to do.  Funny how things get done when the computer stays off all evening.

Sean could barely stay awake for me to get home last night so he could show me.

Yesterday was an amazing day filled with inspiring moments of independence. I was awed, truly awed.   My little boy was beginning to not need me anymore.

Until this morning... when he came out of his room dressed in a green t-shirt and red sweatpants....

Tuesday, March 29, 2011

A Trip To The Mall

Woo Hoo! Woo Hoo!

Happy Dance, Happy Dance

Sean's day went well yesterday.  I'm not quite sure of the details but he came home exhausted and happy.  AND... no phone calls or emails from school personnel!!!!

It will take weeks before Sean processes the minutia of the day and reports back to us.  It's something that we have gotten used to over the years.

For example, I was driving to the local mall one day when Sean shouted from the backseat of my mini-minivan, "Someone got hurt on the playground."

Hmmmm... considering it's the middle of winter and I know for a fact that Sean's classroom doesn't go outside in this kind of weather, I know this is not a recent event.

"Sean, when did that happen?"

"Oh, a few weeks ago."


It seems like difficulty in communicating with my autistic child would be a foregone conclusion, but when your child IS verbal, a whole unique dynamic is thrown in.

Most people would readily assume that Sean would tell us the goings on of his daily life.  He would tell us if something was wrong or if someone had wronged him.  One would think so but it's simply not true.

Sean needs time to process.  The details are in his brain - locked behind a multitude of doors, each with their own unique key.  It can be a scene in a television show, something one of us said, or merely the passage of time that will enable Sean to finally unlock that door and let us in.  Even then, the story may have as many twists and turns as a corn maze and you'll have to take a time-out for your own processing!

Honestly, and I really don't want to admit this, but it can be exhausting at times.  I'm sure it's equally, if not more, exhausting for Sean.

How do you communicate with a world when you prefer to be in your own?  He struggles with words and phrases.  You can feel his brain working.  You can see the strain on his face as he searches and reaches.

It's not easy.  Therefore, we do not push.

We just drive...

And wait for that voice from backseat.

Monday, March 28, 2011

Standing Still In A World Moving Forward

I want to run today.  And if it weren't so darn cold outside, the running might be more literally.  No, today I want to run away.  Get myself out of the house.  Away from the laptop.  Away from the phones.

Today is the first day back to school for the kids after Spring Break.

Tired?  Yep.  Crabby?  Oh yeah....

And that's just me!

Seriously, though, the morning went better than expected.  Some groaning.  Some grumbling.  But overall, an ok start.

The reason I want to run so badly is because today Sean starts not only a new rotation in Fine Arts (music instead of art), but he is also adding two more classes to his schedule at the junior high.  Integration is moving forward and while Sean may be prepared, I am not.

He was instructed to check in with his mentor first thing this morning.  I reminded him... alot.  Nagging?  Probably.  Beyond the accepted annoyance level of a soon-to-be-teenager?  Definitely.

I hope.  I hope.  I hope.

Sean's last "first" day at the junior high back in January was a silent disaster according to me.  Thankfully, Sean was blissfully unaware that anything was amiss.  He was given an incorrect schedule, led to a vacant classroom and left there.  No one looked for him.  No one wondered.

I know he's in a school with almost a thousand other kids and we're not supposed to expect special treatment.  But this was a big step for Sean.  A big step for us as a family.  It was trusting outside of our small circle.

Sean may be just one in a mass of kids but he's my kid.  My son.  They could have at least given a crap....

So today I sit and watch the clock, wondering if I want the phone to ring or not.

I cannot hold his hand.  I cannot be there to help him get through whatever difficulties he may encounter.  I cannot do what I have been intensely trained to do over the last thirteen years.

I can only hope.

And run...

Now if only it would get warmer so I could.

Sunday, March 27, 2011

Is it A Guy Thing?

Today is my anniversary.  Seventeen years ago I was running around like an idiot getting my hair done, my make-up... even my car washed.  The attendants at Bert's Car Wash, seeing me in partial wedding get-up, asked me if I was running to or running from.....

I eventually walked down the aisle that afternoon in a dress that cost more than my first year's wages at Dunkin Donuts in 1981, complete with blue socks and new white high tops.

As you can surmise, I was not the typical bride....

So today is my anniversary.  Rich will remember (he better!).  Carissa will remember.  Ashley will get a pass for being too young.

And Sean will have no clue.

What an amazing brain Sean has!  Multiple-step multiplication in his head - sometimes even faster than his genius father.  Capable of memorizing 10-15 minute monologues word-for-word when he was only four or five years old.  Picking out the subtlest of music sound bytes from a commercial or a movie and then years later hearing them again and saying, "Oh, that was in the background of such-and-such commercial."

An amazing mind in deed....

He knows his own birthday and yet he will remember neither his parents' anniversary nor his sisters' special days.

On this day where I will recall much of the detail and Carissa will ask how I felt and what I did almost two decades ago, Rich will remember being left behind by the limo and barely making it to the church on time.

And on this day, Sean will shout "Happy Anniversary" from his loft bed only after his little sisters have announced their congratulations and the day will mean nothing more to him than Grandma Lehning coming over so his parents can go to the all-you-eat buffet.

Afterwards, the day and date will fall away from his short-term memory, never to make it long-term.

For all those husbands out there who can't remember their wive's birthdays and depend on their calendars to escape the doghouse for their anniversaries....

I can only wonder.... are they all autistic as well?  Or is Sean just being a typical guy???

Friday, March 25, 2011

Excuse me, Sir

I awoke the other day to the pitter-patter of little feet in the hallway. 

Ok, that's a lie....

They were a men's size 8, half running. 

Must be Sean.  Can only be Sean.

Why did I take out the carpeting and put in fake hardwood floors???

"Slow" is not part of Sean's physical vocabulary.  He runs or "fast walks" everywhere.  I understand it at home.  He's afraid of the dark, afraid of the open doorways in the hallway.  I actually remember doing the very same thing when I was little.  Heck, I walk the halls of a closed building as part of my job now at the age of 43.  I've been known to put a little hustle in my bustle....

Running... oh wait... "fast walking"... has landed Sean in a heap of trouble over and over again.  For years we have been trying to break him of the habit.

Is he afraid?  Is he anxious?  Is he overly excited to get into the school building, get to that class where he is going to sit for the next 45 minutes?

I don't know. 

And until I can figure it out or that miracle happens and Sean can tell me the "why" behind it, he will continue walking at warp speed.  Unfortunately, he will also continue getting into trouble for it.

He's almost 13 years old.  I started driving on my learner's permit shortly after I turned 15.  Two years.... scary.  He wants to drive.  He learned cursive so he could get a license.  I've tried the analogy of obeying speed limits.


Sean is now in a school with almost ten times as many students as his regular day school.  The hallways are crowded.  The entrances are crowded.  He's like the silver ball in the pinball machine - somewhat chaotic and bouncing off of people.

He doesn't even know he's doing it....

That's my problem.  How can I get Sean to change a behaviour that he's not even aware he's doing???

He's a big kid - about 125 pounds.  He's strong as an ox from years of gymnastics.  I worry about him bumping into a little sixth grader and the kid flying across the hallway, possibly getting hurt.

Then again, he'll be in high school in 18 months.  What if he bumps into the captain of the varsity football team?  Ouch.

I better figure out how to break this habit...quick!

Wednesday, March 23, 2011

Let's Do Lunch

I did something today that I haven't done in a very, very long time..... I left my kids with my adult niece and went out to lunch.  My best friend moved away a long time ago and we only see each a few times a year.  Today was going to be our day.

I remember when my husband and I first had kids.  People would always tell us to get a sitter and make sure we go out on "dates."  Carissa came right after Sean so for the first few years we were too tired and too broke to do much of anything.

By the time Sean was three and a half we were already on that long-winding path to diagnosis.

A babysitter... for a disabled child... yea... right.  That was so not happening.  "Date" nights would have to wait.

The grandparents helped out as much as they could through the years.  My sister or nieces as well.  But we called on them due to need more than want.

The last time my husband and I went out was sometime in October of last year.  Before that it was almost a year... and before that it was about 15 or 16 months.

When you have a disabled child you can't simply pick up the phone and call the high school kid down the block.  If only it were so easy....

Impossible is more like it.

I really, really wanted today to happen.  My niece was the fourth person I asked and only available because she's a teacher on spring break as well.  She's been around Sean before and it was on his own turf with his sisters close at hand.  I wasn't going to be far away.  I didn't worry all that much about how it was going to go.

In the end, I didn't need to worry at all.  Things went smoothly.  I didn't even get a single phone call - oh how unloved I must be!

No, today went well.  I needed the break.  I needed the opportunity to fix my hair, put on that nice shirt and those killer heels, get the make-up out of the packaging.  I needed the one-on-one time with my best friend. 

It felt good to take the break.  I missed my kids.  But it still felt good.....

Tuesday, March 22, 2011

Baby, It's Cold Outside

Spring has sprung from the Chicagoland area.  Yep.... it's gone down the street, made a left and caught the first bus out of here.  It's gone South because it's too darn cold!

I was able to kick the kids out of the house and into the backyard for a short time yesterday.  The sun was trying to shine through the cloud cover and it was about 60 degrees. 

The girls grabbed their light jackets and Sean grabbed... what else?  Nothing.  At least he put on sweatpants over his ever-present shorts.

Last Saturday morning it was 28 degrees when we were leaving for gymnastics practice.  Sean was dressed in a t-shirt, shorts and his winter coat.

Typical almost-teen or autistic young man???

Years ago I bought a thermometer that I thought would help Sean dress properly for the weather.  It has a little cartoon figure - in my case, a boy - that will be "dressed" according to the temperatures.  His wardrobe varies from a swimsuit to a fully decked-out-for-sledding outfit.

It's kind of cute, fairly accurate, and for $25 worth a try....

And Sean couldn't care less.

Saturday morning I gestured towards the little man all bundled up on the screen and Sean simply waved him off.

"Mom, it's not like I'm standing outside waiting for the bus."

Different scenarios of the car stalling and having to hike to safety - given where I live and the route I take... all of say.... 200 feet - run through this mommy head of mine.

I'm sure impending disaster awaits....

I give in and off we go.  Sean gets in the car and turns the heat on high.  Cold air blasts him.  I turn it down and remind Sean that the car will never warm up during our two mile drive.

He complains he's cold.

I bite my tongue and contain my giggle as Sean's monologues fill the air.


Monday, March 21, 2011

Are We There Yet? Destination...Sean

Happy Monday!  Happy Spring Break... or not.

It is a mere two hours into our staycation and I have already scolded Sean for chewing on the mouse pad on the computer desk.

For the most part, I really do enjoy these days.  Days where I am not turning on all the lights hoping to annoy my sleepy kids enough to get out of bed.  Days where I am not constantly watching the clock and completely agonizing over the slowness of their morning routines.  And days where this night owl mom can sneak in a few extra minutes of sleep.

Even with the children ultimately getting on my nerves, the bickering and fighting, the incessant screams of "Mom!"... even those times where the bathroom is no longer considered sacred, hallowed ground, I enjoy Spring Break.

It's the Monday afterwards that I will not enjoy.

Sean will be off routine.  You all know what that means.....

One week of semi-bliss filled with more go nowhere days than not, almost always ends with a day of enormous stress.

And that's just for you!

Think about it through Sean's brain.  He's had a week where he doesn't have to hold himself together.  A week where the rules are ingrained and the people know him well enough to either give him a break or punish him to the fullest extent depending on where he is in his world when the infraction occurred.

A week where he can flap, he can talk, he can drive his poor mother nuts by pacing back and forth from the living room to the kitchen.  He can even chew on mouse pads.  This week he will not be written up.  He will not have to "read" people he's never met or deal with kids that he sees only 9 to 3 for 180 days a year. 

He knows us.  He knows this world.  And we know him.

Sean can be himself... his true autistic self.  His true, amazing, beautiful self.

This week Sean will relax.  And so will I.  Next Monday is a million miles away.

So let's take today, this moment, to stop, breathe, and enjoy.  We can worry about tomorrow when it comes.

Have a great day everyone!!!

Sunday, March 20, 2011

Playing With The Hand I'm Dealt

It is Sunday morning.  Finally, my day to sleep in.  Then why am I here typing this at 5 am?

I awoke from a nightmare twenty minutes ago.  I think I was able to awaken myself out of it, if that is at all possible.  Unlike those good dreams where you try to go back to sleep and recapture the moment, this time  I did not wish to know how it ended.

We were moving or remodeling.  I don't know which.  Sean was helping the carpenters outside.  He was washing my brown pseudo suede curtains in the baby pool.

Remember, this is a dream so just go with it....

He gets soaked.

It's before school and I call him in to change because the bus will be here at any moment.  He starts crying and proceeds into full meltdown mode.  A simple request has led to this.  I'm frantic after one look out the curtains reveals that not only has the bus already arrived, Sean is soaked, and, oh yeah, I have two other small children running around the house in need of getting ready for school as well.

I go out to the bus to calmly explain that Sean will need some more time and that I will bring him to school in a bit.

I try calling the school but can't get the doggone number right.  My fingers keep pressing the wrong keys but at the moment I'm not even sure what the correct number is.  My mind is not thinking....  I call Sean's teacher direct.

Should I call him in sick?  Lie?  I can't do that....

No, I'll be honest.  Sean is having a meltdown and I'll bring him to school in a an hour or so.

The teacher, while understanding, replies back, "I'm not sure if that is going to be an excused or unexcused absence."

Unexcused?  I've never had an unexcused absence in my kids' lives!  Not even in my own!  Way back when for Senior Ditch Day my mom actually called me in sick....

Unexcused?  It can't be.  But why am I worrying about such a minor thing?  Maybe I'm looking for some small victory on a day that is looking to be filled with endless battles....

The teacher tells me she'll talk to the office and let me know.

I scurry about the house trying to regain some sense of normalcy.  Sean's meltdown is coming to an end.  The kiddie pool is filled with more bubbles than Ashley's bath.  My girls have yet to make an entrance.

The phone rings.  It's the new secretary from school.

"Dr. Principal says it's OK.  Bring Sean in whenever you can.  And he wants to cancel the meeting for...."

I wake up.  Force myself.  It's 4:40am.

In real life we only have one meeting scheduled.  One.

It's about integrating Sean more into the mainstream junior high.  His behaviour hinges on it.  Going there means everything to Sean.  Therefore, it means everything to me.

Don't cancel.  Don't cancel.  Don't cancel.

In my dream, my nightmare, I don't give him a chance.

But Real Life has yet to show its cards....

As for me... I really need to stop drinking Pepsi after 7pm.  I'd prefer it if my dreams were a little less caffeine crazy.

And I need to calm down and go back to sleep.  It is, after all, Sunday morning and everything will be OK...

Life is going to be what it is going to be.  I can help it along.  I can prod.  I can push,  And I can shove.  Boy, can I shove!  But, in the end, everything - Life - is going to happen exactly as it was meant to be.

And if I think I can change that, then I truly am dreaming....

Friday, March 18, 2011

A Lesson Learned

I am a blood donor.  I don't mind it really.  What's 15 minutes or an hour when it can mean something as important as life to someone else?  A couple of weeks ago I donated platelets.  It's a two hour procedure and besides having the surreal experience of seeing your own blood pumped out of you, course through feet of tubing and then go back into your body, it wasn't bad at all.  I sat on a heated cushion, comfy cozy under a blanket and was able to watch an entire movie start to finish without a single cry of "Mom."  Afterwards, I was told - not suggested - told to eat some snacks!!!

Ahhhhhh bliss.  Throw in a soundtrack of ocean sounds or Tibetan chant and it's close enough to a spa day for me!

I don't mind the needles.  The worst part for me is the Superman strength of the adhesive on the band aid.  Seriously.

Sean is not a needle guy.  I had hopes that he would not inherit my husband's fear of the things but alas, it's coded in his DNA.

He wasn't always afraid.  When we were going through the long diagnostic process, Sean had countless tests.  Once, early on when he was only 6 or 7 years old, he had to have twelve or thirteen vials of blood taken for various reasons.  Rich and I were prepared.  We had all sorts of bribes tucked away in our brains and most likely some in my backpack as well.  It helped that the lab was located within smelling distance of the french fries cooking up at McDonalds conveniently located in Chicago's Children's Memorial Hospital.

All that preparation and he didn't need a single thing.  My little man sat there and was mesmerized by the whole process.  Oh, what a moment.

A historical moment for the golden arches in deed... to be used as a celebration instead of a bribe.

Years later for Sean's 6th grade physical it was not quite as easy.  He was going to get shots and he knew it.  The fear mounted over days.  He made it through the finger stick and then completely lost it.

He fought.  He screamed.  Talking was of no use.  The terror in his eyes was too deep.  You want to take the shot for the kid but you can't.  Your mind races and irrational thoughts of keeping him out of school so he doesn't have to go through this moment of pain swirl in your head.

But you know you have to get through it.  You have to dig deep and figure out something.  Figure out the magic word, the magic touch.  You have to perform the miracle.

After two hours the miracle came not from me but from Sean himself.  He said, "I'm going to count to 3 and then I'm going to scream.  You can give me the shot then."

Ok... let's do it.

I hugged him face to face with his arms pinned in my armpits.

He counted to three and then screamed like I'm sure no one had ever heard in the doctor's office before.

And then it was over.  Success.

Do you want to know what he said afterwards????

"Is that all?  That wasn't so bad."

I'm sure I laughed through my exhaustion.

Thursday, March 17, 2011

From My Heart....

Happy Anniversary! 

It's been one month since I posted my first story about tying shoes.  Twenty-nine posts, 1109 page views and 135 cities later, here we are.

Thank you to everyone who has read, commented, shared, emailed....

I had no idea what would happen after I hit enter that first day.  I am, after all, just a mom. 

It all started with an idea to make a photo book.  Then one comment by a friend.  Then another.  And finally, a belief - not by me - that my voice could make a difference.

Thus, here we are.


I reference the word "alone" throughout the headers and sometimes in the posts.  Believe me, there are times when the word "alone" is really, truly, all about one person feeling utterly by themselves.  I've been there.  I've felt that.  I have sat at the kitchen table unable to move because of the hopelessness, the helplessness.  Paralyzed by the sheer volume of crap that gets heaped upon you by professionals.

Yep, I've been there.

But this blog isn't about that type of alone although I want everyone out there to know that when you're at your kitchen table crying or lying in bed in the middle of the night being crushed by your fears or standing on a playground filled with parents and thinking that they have no idea what you're going through... Hey!  I'm here.  We are here.  135 cities from Washington to Florida, New York to California (and Alaska and Hawaii you're coming next...).... We are all here for you... for each that we are not alone.

We will stand together and give our children the best possible futures that we can give....

The alone I talk about, the alone I refer to, is the sheer fact that we are alone in our own heads.  Yes, I have an autistic child and so do you.  We may share some experiences.  We may not.  What worries you may have, may not worry me.  No one shares our thoughts, our feelings, our fears, our triumphs and dreams exactly like we do.  Nobody.  Therefore, we are alone.

And I'm just one mom.  One under-educated, slightly overweight mom in a world filled with amazing, incredible people.  But we all have voices.....

One person said that I had a unique perspective and had a belief that putting my thoughts and feelings down in a blog could make a difference.

I don't know if I have.  It's quite bold of me to even think I could.  But you have written wonderful emails to me.  You have reached out me.  You have welcomed me.  You have shared slivers of your world with me.

For all of that... for all of you.... I am grateful and quite humbled.

Thank you. 


Wednesday, March 16, 2011

Pass the Peanut Brittle, Life is Going to be OK

My jaw hurts.  I can feel the stress slowly seep through the muscles and rob me of both flexibility and weeks of being pain-free.  The miles on my exercise bike a constant reminder that "soft food diet" does not mean hot fudge ice cream sundaes for breakfast, lunch and dinner.

Today has been one of those days and it's only 11:27 am.  It's not one where chaos reigns and you go into Super Mom mode and finally come down from the adrenaline high after the last child is safely tucked into bed.  It's not one like yesterday where there were moments of sheer giddiness over your love for life.

No, today is just one of those days where the things-to-do list stretches further than your capabilities and the bumps in the road come somewhat as expected.

Sean had an orthodontist appointment this morning.  A short, uncomplicated one but it still involved an email and three phone calls to inform everyone of the slight change in schedule.

Did the bus still arrive to shuttle him from one school to another even after I called to cancel?  Yes.

Oh, why do I try?

The biggest surprise of all from this morning's adventure came from Sean himself.  He was late coming to the office after his last class.  The minutes ticked by and I could only imagine getting stuck by every red light between school and the orthodontist.

He didn't slip by and get on the bus, did he?  No....

Finally I see him coming down the hall.  He's walking.  Slowly. 


Obviously something is wrong but he won't say until he gets into the car.  It takes the entire car ride, every red light, and a swoop into a parking place with my mini, minivan before I'm able to figure out that a teacher stopped him in the hallway and questioned him as to why he was at his locker during an unscheduled time.

All he had to say was "home"... "mom"...."braces".... any utterance as to what his plans were and maybe the teacher would have understood.

But those words were left unsaid.

He became frazzled.  He panicked.

I think he was afraid of getting into trouble for something that he didn't understand.  I also think the reason he was walking so slowly was so that I wouldn't see the tears in his eyes.  I did see them.  I peeked out of the office door and saw him wipe them away as he came down the hallway.

I felt so bad.

But the important thing though, is that he handled it.  Not me.  Not Rich.  But Sean.  And while he might have been upset or confused, he got through it without a meltdown, without screams, and, what will be my secret, without tears.

Sean's growing up and doing well.  He really is....

I couldn't be more proud.

Tuesday, March 15, 2011

Here's A Story....

Sean had a nightmare last night.  I'm not sure what it was about.  I was too much into my NyQuil induced slumber to manage anything more than a passing mumble of "Is he OK?" to my husband as he came back to bed.

This cold/flu/allergy thing that I've been fighting since last week can leave my body anytime.  I promise I won't miss it!  Besides, it's against the rules to make a mom sick.

I just got off the phone with the hubby.... The nightmare was about spiders.

I should have known.  Spiders are the one subject that would cause Sean to bolt from his bed and be unable to not only fall back asleep, but to keep the tv on the rest of the night as light.

I have a fear of spiders.  My husband even knows by the sound of my scream just how big it is.  Orkin has been my best friend.

But Sean has this fear that goes beyond turning on the bathroom light at night and finding that you have a friend looking over you.  No, his fear is intense.

One of his past teachers, a very kind soul, took care to either cover his page or even skip the page altogether if they were reading a story about the dreaded things.  She knew how uncomfortable it would make him. 

As I've said before, some fights aren't worth fighting....

I'm sure there is a dictionary or encyclopedia volume around here with a carefully taped over picture of one of our 8-legged friends.  I certainly do not mind the loss of the visual.

Hmmmm.... maybe the next time Sean has to be punished, instead of writing I should have him watch the Brady Bunch episode in Hawaii??? 

Cruel, perhaps?  Nah, it's the Brady Bunch.  Sean will think it's a hoot when Mrs. Brady discovers that the bag acting as the tarantula's final resting place does not, in fact, hold the pearl necklace that she so desires.

As for me, after last night's incident I was able to fall back asleep only to have a nightmare of my own....

Mine was about the bus.

Monday, March 14, 2011

This Hurts Me More Than It Hurts You

I am living in an infinite loop of the opening of the Simpsons.  Could I be raising Bart?

Sean's difficulties on the bus continue (groan).  He gets out of his seat before the bus has come to a complete stop and also questions every rule.

For a kid that can do 3-digit multiplication in his head, why can't he get it????  Why????

I understand the whole seat thing.  He's on the bus for 45 minutes or more in the afternoon.  He's anxious to get off.  Heck, I'd be anxious, too!  But he's always in such a rush.  I can only imagine the fight he has with his self control every day as the bus turns onto our street. 

And then there are the rules.... oh, how my son dislikes rules.  He's ok with them as long as they make sense to HIS brain.  Not our brain.  His brain. 

I can tell him all sorts of things like you can't get out of your seat until the plane has parked at the gate... you can't go as fast as you want in a car just because no one is on the road.... rules are there for everyone's safety....  Nothing makes sense to him until he has processed it in his own special way. 

Right now, today, I don't think he's there yet.

Over the weekend, my husband tried something we've done before.  If Sean isn't quite "hearing" us then we'll make him write it.  Alot.  And with the increased pressure that he uses, writing is extremely physically demanding.  Hopefully, he will come away from the exercise/punishment with more than just a sore hand and arm.

I will follow all rules, sit in my seat, and not talk back to authority figures.

Fifty times.  Saturday.  Fifty times.  Sunday.

Bart Simpson writes his sentences on the chalkboard every Sunday.  Sean has his own dedicated notebook.

I'm not sure if I'm going to meet the bus this afternoon.  I generally never do.  It drops off at the end of my driveway so this helicopter mom usually lets Sean navigate the 50 feet to the front door by himself.

Should I become a "tiger mom" and get a personal report from the bus driver?  Should I trust my overly honest son to tell me if he did as he was told?

I don't know.  For now the notebook remains on the table awaiting the next fifty sentences.

I want to have faith in my son.  I want to have hope that something is making sense to him today.  I want to.  I really do.

So I will....

Or, as Bart Simpson would say, "That's the plan, man and I'm sticking to it."

Sunday, March 13, 2011


Today is Sunday.  I missed blogging yesterday.  The first time since I began that I skipped a day. 

I tried.  Wrote sentence upon sentence in my thoughts.  Spoke them in the car.

But I could not put fingers to keyboard.

Yesterday was a day that should have never happened.....

You are supposed to see friends at reunions, at block parties, at some other joyous, momentous milestone events.  You're not supposed to see them at funerals.  Especially not for one of their wives.  Not at this age.

I kept it together throughout much of the time.  "Hello"... "Sorry".... "Call me anytime".... polite outward greetings, required statements for the day.

I chose a seat off to the side.  Alone.  Sometime during the mass the tears began to flow.  I could not contain them.

The clergy talked about a beautiful tapestry and how are lives are the interwoven strands.  I'm not a religious person but I know the tapestry about which he spoke.  I first read about it twenty years ago in a book called When Bad Things Happen to Good People.  I happened to read it the semester in college that my nephew was stillborn.  I always pictured Joshua as the point of a star....touching and being touched by the thousands of strands that surrounded him in the galaxy.  At the time it comforted me...

Yesterday as I knelt there and cried in silence, my mind shouted "Not fair."... "How could you?"...."Why?"  I was angry.  Confused.  This wasn't supposed to happen.  This was senseless...

But most of all, I was scared.

You see, my friends, she left behind her little boy.  A son with special needs.

And at the end when my childhood buddy and his son said their good-byes and turned to walk away, I could not imagine how alone in a room filled with people they must have felt.

How fearful for his son's future...

How fearful for my own son's future...

What if?......

And that is why I cried.

Friday, March 11, 2011

Food - Good Food - For Thought

I'm not feeling well this morning.  A carryover from last night.  Perhaps too much pink frosting...

Sean rarely gets sick.  He complains alot about various things - mostly his neck and back - but he really is quite a healthy boy. 

His diet is amazingly nutritious.  I can't take all the credit though.  Part of it is, in fact, due to his autism.  All of his life Sean has loved the hard, crunchy texture of certain foods.  Apple slices were his food of choice as a toddler.  Carrots soon followed.

A big shout out goes to Barney.  Yes, the purple dinosaur himself.  I had initially banned him from my household but once he mentioned "broccoli trees" and eating the leaves off of them... Sean was hooked.  How could you not love and embrace the big guy after that?

Over the years Sean has added other foods to his diet but always at his own pace.  I remember one time I was going to eat a hamburger at a fast food restaurant.  I knew better than to ask him if he was interested in this food or that food, finally giving in to the notion that he was set in his limited diet.  Sean asked if he could try it.  Was I shocked?  Yes.  More shocked though when he then proceeded to eat the entire thing.  Spinach, mac & cheese, spaghetti... they have all become staples.

He has this unique, absolute unbreakable willpower when it comes to making his food decisions.  If he sees a report saying something is not healthy about his favourite food, then he won't eat it again for years.  He's a very conscious eater and his food choices make an impression.  At school, for whatever reason they have some party or such, the teachers will  include a veggie tray.  Sure, it's mainly for Sean but if other children see him eating from it, then they may just follow his example.

Thus, our children, our wonderful autistic children, with their texture sensitivities to food may be telling us something....

Maybe we should all be a little pickier... a little healthier.... with our diets.

Thursday, March 10, 2011

Getting More Than Sleepless Nights In Return

Today is Ashley's birthday.  She's 5.  If you've been keeping track, I have a 12 soon-to-be 13 year old son, an 11 year old daughter, and a 5 year old little girl.

Happy Birthday to her!!!

I remember when I got pregnant.  It was quite a surprise - a four pregnancy tests kind of surprise - and something that I had always hoped for.  I think people were shocked.

Unfortunately, it was a really rough time in our lives.  Sean was newly diagnosed and we were trying our best  to navigate the path that we were now on.  He was also having difficulties at school and Rich, my husband, was having to take on more of the responsibilities with regards to the now monthly update meetings with district personnel. 

Being "advanced maternal age" according to my medical report and the ripe, old age of 37, people's comments were going beyond "When are you due?"   They often wondered aloud what I would do if I had another child like Sean. 

Hmmmm....Like Sean???

Oh, you must mean blonde, left-handed, gorgeous and absolutely brilliant!!!!  I can only hope!

One person, a psychologist, even asked me how I could bring a baby into the house when I had a child like Sean. 

Excuse my language, but who the hell did she think she was?!

Sean had his moments of frustration.  He had his moments where he was uncontrollable and you literally almost had to lay down on top of him to calm him.  He was living in a world that we didn't understand and he didn't have the ability to tell us what he needed.  Of course he was angry.  Of course he was frustrated.  And yes, at times, he was out of control.

But he was also my son.  A wonderful little boy who made you stop and see the rays of sun peeking through the blinds.  A little boy who would run out of school every day and jump into my arms so I could swing him around and hold him tight. 

Autism is something that he has.  Sean is who he is....

I never worried about Sean and the baby.  Never.

And when Ashley was born it was as if something was born inside of Sean.  It might have been due to age or maturity.  It might have been due to therapy.  But something happened.  He began to respond.  He began to come out of his shell.  This little screaming meatloaf that we called Ashley was getting through to him. 

Over the years, as Ashley learned how to communicate, Sean did as well.

Sean was Ashley's first best friend.

While Ashley was a special gift to us, she gave so much more in return.  Ashley gave us light, hope, laughter, joy.

She gave us Sean.

Happy Birthday Ashley!  And thank you...  Love, Mom & Dad

Wednesday, March 9, 2011

Hand to Hand Combat

I have a goal.

It's bigger than completing my first triathlon this fall.  Bigger than having the sink be free of dirty dishes for one hour.  Even bigger than scoring a ticket to Oprah's Favorite Things Show (the equivalent to Super Bowl tickets which we did get one year.... however, Oprah, alas, we did not).

No... this is bigger.

My goal this year is to have Sean use liquid soap.

I know, I know... "Impossible!" you say.  Just the mere mention of washing his hands with liquid soap will send his body into an immediate fight or flight response.  His muscles tense, his eyes well up, the screams of painful agony begin to grow... and that's before I've turned on the water.

Liquid soap for Sean is like lava flowing on his skin from a volcano.  A fiery hell that is so deep and so scary that I'm not even sure I  know how to begin to access it.

Texture and sensitivity issues...  Do you fight the fight or deal with it?

For years we have done our best to accommodate him.  He has his own bar of soap in a travel box at school .  He also has one in his backpack for days when he goes to after-school cooking club at the junior high.  At various times you will find a bar of soap in a Ziploc baggie found stashed in my purse, my glove compartment, a long-forgotten diaper bag.  I'm sure after I die the children will discover a bar hidden amongst my things....

Sean takes showers.  He uses shampoo - when reminded.  And, you are going to love this, he uses LIQUID acne soap in the shower!!!  I have chosen this year to take up the fight because I'm frustrated and I simply don't understand.  Why can't he make the connection from the liquid soap that he uses in the shower to the liquid soap that he would use at the sink?

I know it's not crucial to his well-being.  He can certainly survive in a liquid and foam soap world and be perfectly happy.  I'm not even talking about quality of life.

I don't know.  Maybe I'm being selfish.  Maybe I want this one little quirk to go away so we can be "normal" in one tiny realm of the world.

Little...tiny.... that's how millions of people see the issue.  You press the dispenser and the soap streams out onto your hand and you think nothing of it.  It's mindless and countless people do it every day.

But for Sean it's huge.  It's Mt. Everest for him.  It will take time.  It will take hours at the sink.  First, I'll wash his hands for him so, in his mind, he's not touching it.  Then maybe I'll move on to having him play with the foam...eventually the liquid..... 

Oh, even that seems overwhelming to me right now.

We'll have to wait and see.  You'll have to tune in to check on the progress. 

Speaking of... George let me down yesterday and Sean's arms showed signs of picking.  Hopefully, George will be back on the job today.  Or else it's back to the ever-so-popular "Mom Monitoring" (a.k.a. nagging).

Even if we get over the picking and the liquid soap, there's always going to be another mountain to climb.

You have to just keep going.  Rest when needed.  But never give up.

Then again, Sean is a boy about to become a teenager.... maybe he simply doesn't like being clean!

Tuesday, March 8, 2011

Solving the World's Problems With Duct Tape and a $1.50

I used duct tape this morning to fix Sean's binder. 

Cheap?  Considering the car is getting two new - badly needed - tires tomorrow and I have thousands of dollars in electrical and concrete repair work staring at me, I perhaps think I am.

However, I'm going to call myself practical.  Sean breaks things.  It's a fact of life.  Pencils, erasers, fidget toys.... my watch.... my first stethoscope from college when I dreamed of becoming a doctor and saving the world.

He likes to touch things.  And he touches them hard.  They break.

A fact of life.

I remember hearing from someone during all those evaluations and therapy visits that he does that because he has a disconnect or slowed connection between what his body is doing and what his brain is thinking that his body is doing.  Sean couldn't close his eyes and turn his hand over from palm down to palm up....

He writes so hard that we have to buy special pencils over the Internet - and we buy them a gross (144 of them) at a time.  We tried for years and years to get him to write with less pressure so that he would no longer gouge the table but our efforts were futile.  Both the private and school occupational therapists tried as well.  Recently, Sean was able to verbalize that the reason he uses so much pressure when he writes is because it lets him know what his muscles are doing.


Of course, he only said it once so I'm truly grateful that the person who was with him at the time was actually listening.

But I digress....

Sean will touch and play with anything.  Policing what is within his reach - or what's he found - is probably one of my biggest jobs as his parent.  I can only imagine Carissa's reaction if Sean were to ever break something of hers.  She would go ballistic!

Fidget toys with tentacles pulled off (and I find them laying everywhere!!!).  Fluid filled fidget tubes that are busted.  Chew tubes that are mangled.  Shirts that are chewed on or ripped.  Even the laminate on the side of his bed.  Nothing is immune.

As a younger child, he used to pinch my elbows.  Now that he's older, and if I'm wearing a short-sleeved shirt, he'll either pinch the back of my neck or pinch the skin on the inside of my upper arm (ouch!).   At least he can't break me.

Remember the skin on his arms?  He even fidgets with and breaks that....

On a good note, I think I've solved that problem.  Quarters.  Three quarters in each of his two front pockets of his blue jeans.  He fiddles with them and loves it.  I hear that jangle and know that for the time being he's not ripping at his arms.

I call it my "Let George Do It" solution.  In 1976 my school put on a bicentennial variety show.  One of the songs was called, "Let George Do It."  George Washington is on the quarters and the problem with Sean's skin is slowly going away.... I think George is doing a darn fine good job!

Of course, the season for shorts is right around the corner.....

For now, I will take pleasure in this morning's use of duct tape in fixing his binder.  I think it looks pretty doggone cool.  Made me feel totally Tim Allen, Tool Time, Home Improvement-ish....completely worthy of one of those manly growl/howl noises he used to make.  If only I could sound like that....

Instead, I told Sean not to dawdle while he brushed his teeth....

So much for Tim Allen... I think I've become my mother!

Monday, March 7, 2011

No Lattes Served Here, Only EGGS

A long, long time ago in a land far, far away.... ok.... 35 years and a few streets over..... I remember my mom going over to the neighbour's house in the morning and having coffee.  "Coffee Klatching" or something like that is what we called it.  All the moms were stay-at-home moms and there were a bazillion kids running around back then.  I'm sure the moms laughed and cried and vented.  The children in the neighbourhood always had to be on their best behaviour because everybody watched out for everybody else's kids.  In other words, they wouldn't hesitate to tattle to our parents if they saw us cut across the neighbour's lawn!

I do believe something similar to those days goes on now at Panera Bread in Elk Grove, but I have something that comes even closer.  Something special....

Every Saturday morning I wake up, cursing the fact that we signed up Sean for gymnastics at 8:30am, and try - usually unsuccessfully - to get Sean and myself out the door without waking the rest of the family.  He's on a Special Olympics gymnastics team that is run out of the Elk Grove Gymnastics School (EGGS) a mile or so from the house. 

EGGS is the reason I'm no longer a helicopter mom.  As much as Sean has benefited from the program by way of strengthening and socializing and becoming more independent, I have benefited as well.  And when I say helicopter mom, I mean BlackHawk, radar locked in, never out of reach.  I was there!

Not knowing anybody or anything, and being newly diagnosed, we signed Sean up for what we thought was a class.  The fact that he was now part of a team was a bonus.  I remember the coaches and parents telling me that I would eventually leave Sean's side in the gym and graduate to letting him overnight with the team.  All I could think of was, "No way!!!!"

The coaches are wonderful.  The peer coaches - the high school kids that  pull themselves out of bed every Saturday morning to help our children - are the best this generation has to offer.

I do leave Sean's side now.  Sometimes I even leave the gym altogether and run an errand (O...M....G!!!!).  The trust and care at the gym is boundless.

The parents remind me of the parents from my old neighbourhood.  We care for each other's kids like they were our own.  We cheer them on together.  We feel their pain or frustration together.  Much like our kids are a team, we parents are our own team.  We vent, we laugh, we cry, we share stories and therapy suggestions.  We have become the ultimate support group.

I knew when I walked into practice on Saturday morning and said, "Ugh, we have had the worst week," that not only would they understand, but chances were, someone else might have experienced the same thing.  Turns out, state testing caused a few kids to be out of routine and be less than stellar in behaviour. 

We may not have coffee or sit around the kitchen table.  And certainly, we don't have a bazillion kids running around.  But on Saturday mornings, when the rest of the world just doesn't understand what my life is like, I drag myself out of bed and go to practice.

Because it is there that I am amongst friends and that is the most comforting feeling of all.


Sunday, March 6, 2011

A Power Failure

Let's talk about money....   Oh, I know, isn't that one of the taboo topics of any dinner party?  Money, sex and religion???  But darling, this ain't no dinner party....

Money is foremost in my mind this morning due to the happenings of a mere 24 hours ago.  I casually pressed the button on the garage door opener and, in my imagination, my bank account opened and money flew threw the air.

I have no power in my detached garage.  None.

The prime suspect is a sidewalk that leads to it.  During the past few weeks we've been noticing that our gate is rubbing on the concrete and you have to kick it hard at the bottom to open it.  I think the freeze/thaw cycles have caused our sidewalk to shift in such a way as to crack the electrical line beneath it.

Did I say crack?  I meant CRAP!!!!

Having left my day job three weeks ago, I see many restless nights ahead of me as the numbers for repair come in.

So let's talk about money.... and the lack of it for most families with autistic children.  Remember a couple of years ago the government passed some kind of bill that was supposed to ease our medical expenses?   Have any of you out there benefited????


Here's how I've been on the receiving end of the government and insurance industry helping me....

Music therapy.... an amazing, fabulous program that has helped Sean through so much of his difficulties with not only sound but also physically and emotionally and absolutely not covered by my insurance company.

Occupational therapy.... Sean could not sit up in a chair in first grade.  He had both gross and fine motor skill difficulties.  When my co-pay went from $20 a visit to $40, I had to cut back on the number of sessions.  The insurance company saw it as Sean no longer needing it.  Eventually, the inevitable occurred and we were denied.

Chiropractic care.... Sean is always tense and the muscles in his back and neck are constantly sore.  He loves the deep pressure as well as the relief.  I think it's quite therapeutic for him but it's not covered.

Speech therapy.... Sean wasn't diagnosed until first grade.  That's too late in the insurer's eyes even though it took us years to get through the system of waiting lists.  Dis and dat will remain part of Sean's vocabulary until I can find the right home remedy because it's not covered either.

Not covered, not covered, not covered.  All of the above, all that Sean either needs or has benefited from, are not covered.   Even to see a psychologist - one that bonds with Sean because working with autistic kids is their speciality - is only partially covered after meeting the deductible.

Aren't we shooting ourselves in the foot by denying our children services when they are younger and better able to benefit from them?

With all the bills and laws, walkouts... health care this and health care that.... they talk about how it will affect the little guy.

I sure hope that the little guy they are talking about is Sean or your child.....

Saturday, March 5, 2011

The Social Network

Shhhhh.... can you hear that?  It's the sound of all three children playing in the other room - together...or as together as they can be - and not outwardly annoying and/or torturing each other.

I can guarantee this moment of bliss will not last.....

Dang, already over.

Carissa the 11 year old is yelling at the 4 year old.  The 4 year old is growling back at her.  For once, Sean is not the issue.

I remember all those time of being asked how Sean plays.  What were the words?  Cooperative and ????  I don't know.  Parallel? 

It was always so important to whatever professional I was consulting with at the time. 

Years ago Carissa would bring out her My Little Ponies castle and set it up in the living room.  She had tens of little ponies and little pony accessories that you would eventually lose track of only to step on in the middle of the night.  Sean would bring out his tank and shoot at the castle.  He especially like when the ponies attempted to escape in their hot air balloon.

Each child was doing their own thing but they were together. 

I never knew how that scene - which occurred so often in my house - would be categorized.

With all the technology available for today's youth, do kids even know how to play together?  Play cooperatively like the professionals want?

Sean's learning....  baby steps.  It takes alot of prompting.  It takes alot of listening.  He's doing better.  When he's at the computer, he no longer shoves his sister away from him.  Sean even lets Ashley order him around for a time on Wii Ski.  The other day, Ashley actually asked to play with him!


But, for the most part, he prefers to be on his own.  Reading, playing video games, listening to his MP3 player, researching things on Wikipedia (I told him he had to find a hobby other than picking at his skin - he chose Wikipedia - yea for me!).   He's absolutely content to be engrossed in his own thoughts, the sole inhabitant of his own world.

A couple of years ago I worked a junior high dance at the local park district.  Along one wall sat five or six girls.  Each with a cellphone.  Each texting the other.

My nieces did the same thing after Christmas dinner this past year.

You have to wonder sometimes what's a trait of autism and what has become the "norm" for the current generation.

Sean may not be the only one that has difficulty socializing....

Friday, March 4, 2011


Got the shirt - woo hoo!  He left it in another classroom during state testing.  Small victory.

The something that I eluded to in an earlier post.... it's a bus thing.  It's getting worked out but it will take time and effort.  I  think it's amazing that the Utopian society that existed on the bus 30 years ago still survives and actually thrives today even with the addition of bus aides and on-board video cameras.......

Wow, what a day I had yesterday!  On top of Life happening, I had to pay a visit to what is known as the Secretary of State in Illinois, the DMV to some, and H E double hockey sticks to just about everyone else.

My task was simple enough.  Replace the license plate sticker that refused to stick to my clean, dry, garage-kept car with said plate.

Is it ever that simple???

The rudeness I encountered was beyond any that I had ever experienced before.  When the female clerk - during my explanation - said "Whatever" to me, I could not believe it.

I was shocked, appalled.

All I wanted was a sticker that stuck. 

What if Sean was older and I had sent him in to complete this supposedly uncomplicated task?  I want him to be more independent so I insist on him ordering his food at Denny's and checking out his own library books. 

What if???

What.... if....???

I worry about society and the lost art of nice-ness....of compassion....of helping out a fellow human being for absolutely no tangible return.

I worry about our kids.  I do not have any physical disabilities.  I do not, to my knowledge, have any mental deficits.  I do not require any special assistance.

What I do require is respect.

When our child takes those steps towards independence and either stumbles, fumbles, or falls... 

Will they get respect?

Or is the more appropriate question.... How mean and cruel... will the world be to them?

Thursday, March 3, 2011

Fabric and Frustration

Can I call in sick to Life????

Today is going to be one of those days.  Crap.

The school bell has yet to ring and already I've made two phone calls and sent three emails.

Never get comfortable.  Never.

Everybody is ok.  It's just something....  Isn't it always something????

Take, for example, this morning's exchange with Sean.  He wears two shirts to school during the winter - a t-shirt worn under a long sleeved shirt or sweatshirt.  Sometime during the day he'll ditch the long sleeved one.  Tuesday he walked in, let out a huge sigh when he saw me and said, "I forgot my shirt at school."

No big deal.  Tomorrow.

Wednesday passed and no shirt was brought home.  Thankfully, due to state testing, he is only attending one school this week and it's a pretty small school.  Odds of finding the shirt are fairly good.

Now, before you start thinking that I'm some totally anal retentive mom - which I admittedly normally am - it's the whole new shirt, worn twice thing.  Money is tight. 

I asked Sean if he remembered where he left it.  My guess is in the gym.

"Well.... the schedule has been so screwed up with testing...."

"Sean, do you remember taking it off for gym?"

"Well.... you would not believe how much the schedule has changed...."

He then went on for several more sentences about testing and the schedule.  I waved the white flag and sent a note to his teacher. 

It's no big deal.  It's no.... big.... deal.  It's just stuff.  And for someone - me - who is so worried about finding a shirt, I had to go through his closet to figure out which one it was!!!!

Knock on wood, but if he were ever lost, I'd fail the first question the officer asked me, "Ma'am, what was he wearing?"     

"Uhhhhhh, clothes?"

It's all minor in the end.  It's the difficulty communicating that frustrates me the most.  Sean's been fighting a cold all week and combined with the testing and the schedule changes, he's been a little off.  Maybe I've been off, too.  If I were to paraphrase some elder female member of  my family, they would have said something like, "Frances skipped the day they were handing out patience and she really should have been in line - TWICE!"

I should be - no, I am - proud of him for how well he has handled all that has been thrown at him this week. 

He's been amazing.

Who cares about a stupid shirt?

Wednesday, March 2, 2011

Drove My Chevy to the Levee and Found That the Music Did not Die

Yesterday was M & M day....  Music therapy and McDonalds.  It's been a staple in our schedule for years.  "Mr. Craig" recently came across our initial paperwork from April 2005.

Wow.... forever doesn't even come close to describing that amount of time.  We were literally different people back then.  Thus, it doesn't even seem like our lifetime ago....

Creative Exchange Music Therapy Clinic in Westchester, Illinois ( is where you'll find us on those days that will end up with dinner in a bag.  Sean will be in back with Mr. Craig and I'll be in the front waiting room, sitting in a chair that it way too comfortable, with the girls reading books or watching them play with the toys. 

The last couple of sessions I've noticed a change in how Sean and Mr. Craig interact.  I don't want to say it's more "adult" because that word has always seemed so stodgy to me.  Rather, it's like buds in a jam session.  It's pretty cool to experience....

We began therapy there because Sean was sensitive to others making noise and yet, he could be the loudest one of all.  Silent car rides.  Whispers.  He didn't even want us speaking in our own home.  It wasn't fair to his sister to insist on silence.

Sean also was stuck in the pattern of going all the way to the beginning of his monologue (his version of a conversation) if he made a mistake with the wording.  Some of them were 15 minutes or more in length!  He would stop and begin again and again.

One the things that Mr. Craig does is play the piano with the kids.  He has everything colour-coded so it's quite simple.  He has the child play a  melody and then he would play the harmony.  The challenging thing for Sean was not only to hear the noise but to deal with messing up the fingering on the piano.  Sean always wanted to go back to the beginning but Mr. Craig continued to play on.  Soon Sean learned that he needed to play on as well.....

The lesson that he learned at the piano translated into our lives at home.  The constant going back in Sean's speech has not completely gone away - he tends to do it when he's stressed and/or really trying to push a point - but it has dramatically fallen off.

And, of course, we can talk!!!! 

Through various other exercises, Sean's stamina has improved as well as his rigidness.  Gone are the days where he would scream and cry throughout the entire session.  My husband can now even take him to therapy (against routine!!!) and Sean will have a good day.

There is music and noise in our lives once again and we have Mr. Craig to thank.  He was able to break through the hard shell and get to the sweet stuff inside.

So thanks Craig, for making a difference.....

Tuesday, March 1, 2011

This Better Not Be Decaf!

First, a bit of housekeeping.....

I do plan on watching Parenthood tonight.  According to my commentor, the parents will be telling the boy that he has Aspergers.

I'm not sure if former President Bush ever gave broccoli another try, but I will be tuning in tonight to see how it goes. 

Besides, everyone and everything deserves a second chance, right?

Now onto the blog....

When I think of chances - and taking them - I also think of change.  Because giving a new television show a chance, a new therapy, a new school, even a new person in your life all essentially lead to change.  Beginning the supplement at night for Sean changed our lives.  Going to Children's Memorial Hospital in Chicago changed our lives.  Making the decision to start a family changed our lives.

We are all about change.  Even if our lives are so routine and mundane that we can sleepwalk through our days, life is changing.

We loathe routine and yet we crave it at the same time.

In January, Sean began taking two classes every morning at the local junior high.  Afterwards, he would be transported to his regular day school. 

I wrote this in my journal that first frightening day...

First day of junior high.  Big day.  Five years of special ed and finally, finally, a first day.....  He'll start with two classes and then we'll go from there.

I'm sick this morning.  Utterly incapable of celebrating and taking part in this momentous occasion.... except to remind my husband to not forget to pack Sean's lunch.  Binder?  Check.  Special pencils sharpened and put in case?  Check.  Locker combo in jacket pocket?  Check.

Everything was set.  I took a picture and off he went....

I am grateful that I exist in a fog of antibiotics, anti-histamines, anti-anythings right now because if I weren't, I'd be completely freaking out....

What was I so scared of that day?  What was Sean scared of?   It was the change in routine.  It was taking a chance at doing something different.  Would he fail?  Would he succeed?  How would it affect our lives?

That day I wished life could be like the day before and the day before that....  Although being integrated was something that we had always worked towards, the moment it happened I wanted our old lives back.  Give me the routine of the bus coming in the morning, the daily reports on his behaviour.  Give me the comfort level where the staff and I can go by first names. 

Give me the routine because I don't want this change.  I was scared.  Scared for everyone including Sean.

As it turns out, Sean had a great day.  He loved it.  And now this week where he has to attend his regular school full-time for ISAT testing, he is bummed.  I worried about the change in our new routine while he worried about missing out on all the new possibilities of the day that the junior high - with almost ten times the number of students and vast corridors to walk and explore - held for him.

When we think about our autistic children, routine is everything.  It overruns us because we see the routine of our children as sometimes being a rock hanging from our shoulders and slowing us down.

But think about this....  How do we react and feel when we don't get our morning caffeine fix?  What about the traffic jam?  Or sleeping through the alarm?  Or getting some unexpected change at work?

Changes in our routine - even minute ones - can really throw us off.  We can have a bad day as a result of one, minor change.

In essence, we want routine in our lives as much as our children do.  

So when we have those moments and think our children are different from everyone else.... think again. 

Are they really?