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.

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."

Yesterday....

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.

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.

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

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!

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.

Wow.....

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!