Saturday, December 24, 2011

Christmas... Walker, Texas Ranger Style

“So Mom…. Are you excited?”

I can’t quite remember exactly when Sean started asking me if I was excited about Christmas.  Certainly, it was at least double digit days ago.

“So Mom…. Are you excited?”

Sometimes I’d say, “Yes.”

Other times I’d ask, “About what?”

I’ve even told him, “No.”

Face it.  You have to have some fun when you’re asked the same question over and over again.

And over…and over…. and over.

While Sean is thirteen, he is as excited as a six year old over this year’s Christmas. 

Could it be the asked-for Chuck Norris movie that has made him giddy with anticipation?  Or is it the combination of the Hawaiian shirt and cowboy hat that appeared on his Christmas wish list?

Hmmm….  I guess in less than 24 hours we will all know what has caused my boy to take to his tiptoe walk and smacking at his ear as he paces back and forth between the kitchen and other rooms of the house.

Yep… the boy is definitely excited.

As for me…  Well, the holidays are different.  People are constantly asking what my plans are…eagerly awaiting me to unfold some grand adventure.

However, Christmas Day will be much like Christmas Eve and Christmas Eve will be much like any other day of the year.

They have to be.

You know routine – and comfort and that feeling of being in a safe zone – is always key to getting through anything.

And “anything” means holidays.

Sean, in a true moment of clarity one year, inquired why we were always the last ones to arrive and the first ones to leave any family gathering.

We were truthful.

We said it was because of him.

Two hours was our usual time limit….Three at the most.

Sometimes it was a matter of minutes.

It’s better now.  Sean has the coping capabilities to go sit in a corner and read or think.  But will he join in conversations with his numerous cousins or wait patiently for his turn at the foosball table?

No.

Sure, you’ll hear him talk.  But is he talking to anyone in particular?  Probably not.  Is he talking with someone instead of at someone?  No.

Will he eat or even attempt to eat the lavish spread that’s been prepared?

No.

When it comes to the holidays and family gatherings, you feel so much like you just want to be “normal” for once…for just a few hours.

You pray, “Please, let us get through this.”

And then you can’t.

Your family tries to understand.  They go out of their way to accommodate.  They try to convince Sean that a turkey leg is actually from a really big chicken.

But in the end, your heart breaks as your child has a meltdown over some minor thing that you never in your exhausted brain could have anticipated or you see the pained expression on his face from being in unfamiliar surroundings or you selfishly tell him 5 more minutes in the hopes of visiting with your relatives just a bit longer after he’s asked you for the zillionth time when you’re going home.

That turkey dinner…that 40 mile drive… those 5 minutes more are simply not worth it.

Nothing is worth putting Sean through that type of stress.

So today on Christmas Eve we will arrive late and leave early.  We will snack but wait until we get home to have dinner.

And tomorrow we will wake up and be as normal as can be…with, of course, a few minutes of frenzied unwrapping thrown in.

We will stop by Grandma’s for a bit to say “Hi” and then it’s back home to have what we call in the Lehning household “hodge podge” for dinner.

Chicken nuggets.  Mac & cheese.  Whatever Sean wants for dinner.  In fact, it will be whatever each of the kids wants for dinner.

As the saying goes, “The kitchen is open.”  The short-order cook awaits…

Our Christmas will be simple…as it should be.

Because kids – autistic or not – are simple.

And Christmas is all about the kids – with a little Chuck Norris thrown in - isn’t it?

Merry Christmas everyone and, as an old family traditional saying goes, I wish you all health and happiness.

Cheers.

Friday, December 9, 2011

A Blessing

There’s a saying about good friends…. You can’t ever break up with them because they know too much.

I have one of those.

We were talking late the other night.  We had both had a really rough few days.  Break-ups, meltdowns, problems at work, crazy schedules…  you name it and the world was crashing it down upon us.

As she turned to leave, she looked at me and said, “You have such a hard life.”

I didn’t think about it for a minute.  I didn’t hesitate for a second with my answer.

“No, I don’t.”

“But you have a disabled child….” she replied.

“I don’t have it any different than anybody else,” was my answer.

And then she left.

And I got to wondering….

Looking back, life was difficult.  I remember the epic meltdowns that lasted as long as 3 hours.  I remember the bruises and the scrapes on both of us as I tried to keep Sean from hurting himself as he banged various body parts on the walls or floors. 

I remember the exhaustion - not only physically, but mentally and emotionally.

I remember those days of absolute helplessness as you dealt with school districts or teachers or parents that simply didn’t understand.

They would call Sean a monster.

They would say that he was being disruptive to the other kids’ learning.  They would say he didn’t deserve to be in the classroom.

And I could only say in return, “We’re trying.”

I was crippled with fear, frustration, and worry back in those days.  I’d sit for hours at the kitchen table and just cry.

I didn’t know how to help my son.  I was struggling to find the right doctors, the right medication, the right therapists.

I often thought that he’d be better off without me.

But then one day led to another and then to another.

And you slowly start to figure things out.

Sure, Ashley cried and screamed the other day about having to go to therapy after school for Sean. 

And yes, the other day we futilely attempted to get Sean to say “yes” instead of “yea” and “this” instead of “dis.”

And the crack in the girls’ closet door from when Sean inadvertently kicked it during a meltdown seven years ago will remain for at least seven more…

But I’m also thankful… grateful….

I am grateful for those “go nowhere” days that we have to put into our busy schedule because Sean needs them.

They give us a chance to slow down and see what is really necessary in life.

I am grateful for the re-heated Kentucky Fried Chicken that we have on Thanksgiving because Sean somehow has it in his head that The Colonel attended that first feast along with the pilgrims and the Indians.

It has taught us that whom you celebrate with is more important than how you celebrate or what you serve.

I am grateful for the “team” that follows Sean’s every movement in school.  I would rather have him over-watched than simply be a number or name on an attendance list.

I am grateful for all the hours I have spent in waiting rooms of doctors and therapists.  I have met some amazing people and heard stories of tremendous strength in spirit.

I am grateful for the kindness of strangers who do understand…

And, in a way, I am grateful for autism.  It has taught me that the best joys in life are simple, sporadic, and worth cherishing.

Finally, I am grateful for my friend who led me down this journey. 

No, my life’s not difficult.  Not anymore than anyone else’s.

In fact, it’s a blessing.

Tuesday, December 6, 2011

Because Mom-ipedia Said So....

After 8 days (including the holiday weekend), Sean went back to school.

Of course, I didn’t want him to go.  I didn’t think he was ready. 

Beyond the typical concerns of would he be tired or have coughing fits, I worried about more basic stuff.

Like…

Would he cover his mouth when he coughed?

Something that is so simple that even 5-year old Ashley has been telling him to do it for years.

So why then, does he not do it?

I could say, “I don’t know” but I kind of, sort of do.

Sean is a defiant little chap.

Yep, that’s my boy…always questioning authority even when I know best.

The worst thing is that because he spends untold hours on the Internet researching whatever passes his fancy that day; he’ll have some obscure study to back up his argument.

How can I, good old Mom, compete with Wikipedia and Google??

Seriously???!!!!

Takes all the fun out of “Because I said so” because I can never say so!

Thus, Sean has some logical explanation for why he doesn’t have to cover his mouth when he coughs.

It’s frustrating because in one sense you’re dealing with a highly intelligent child who probably knows more than you.

Then again, you have a child…a child… who needs to be taught manners and respect and the true meaning of “Because I said so.”

Now that Sean is mainstreamed his lack of manners and teenage defiance actually scares me.

He could be reprimanded for the slightest thing… not washing his hands, not covering his mouth, eating with his fingers…. and it could escalate into an incident that jeopardizes his integration.

I know that sounds completely irrational and like total paranoia, but we all know how things can get out of hand quickly.

And that’s why we worry… or, at least, that’s why I worry.

I don’t think about those things with my “typical” kids.  If Ashley doesn’t wash her hands after using the bathroom then her teacher will remind her and she will obediently head off to the sink.

Carissa would do the same.

Sean would let out a huge sigh and turn it into a civil rights violation.

It’s hand washing for god’s sake!

But that’s the type of stuff that keeps me up at night and why I wanted to keep him home an extra day from school.

What if?

What if?

One of my favourite movies of all time is Letters To Juliet.  In one of the final scenes the characters talk about the words “what” and “if.”  Separate, they are so innocent.  Combined  – and I’m taking great liberties with paraphrasing – they really mess with your mind.

What if?

While Sean learns the system of the junior high and how it feels to be mainstreamed, I need to learn to stop losing sleep over two little words.

What if he gets in trouble for not covering his mouth when he coughs?

It’s not like I didn’t tell him.  It’s not like we didn’t try to get him to do it.

You all know I can be a nag when I want to….

But I have to learn to let him take some of the responsibility for his actions.  He’s almost in high school now.  I can’t be there for every sniffle, every bathroom break.

He’s going to have to learn on his own and figure out that conforming to society doesn’t necessarily mean a constitutional violation.

He’ll learn.  I’ll learn.

And we’ll go on from there…

Why?

Because I said so…

But let me check with Wikipedia first.

Saturday, December 3, 2011

In Search of "Great"

Sean wound up having pneumonia.

I know!!!  Who knew???

So much for that instinct I bragged about…

I thought strep…maybe bronchitis…most likely the lots-of-liquid, totally untreatable, go home and wait it out virus.

But never pneumonia…

As you can imagine, it’s been an exhausting week.

Sean slept and I worried.

I kept a mental note on every cough, every sigh, and every throat clearing.

Was he getting better or was he getting worse?

What did he eat?  How much did he eat?  When will he eat again?

Is he cold?  Is he warm? 

It scared me when he would shiver.

While I am considered the “medical” person in the family who generally takes cares of appointments and emergency room visits, I’m glad that Rich took Sean in that night.

I don’t know why I relinquished my Super Mom/Control Freak powers to him that night.  In the back of my mind was I thinking that I couldn’t physically handle holding him down for a shot if he needed one?  What about the emotional toll?

The two-hour ordeal from his 6th grade physical may not have been far from my memory.

In the end, it was best that Rich went.  Sean did wind up having to get a shot.  It was not quite the marathon of the last time but it did continue to the point where Rich had to tell Sean that it was over and the band aid was already going on.

What was Sean’s comment after it?

“I don’t want to talk about it.”

Wow…not even a “great.”

Whatever was in that shot did wonders and the next day the fever had broken.

It took a couple of days before Sean ventured out of his room to play the computer.  His appetite though is still not back to its teenage-grazing-get-out-of-the-pantry self yet.

He’s starting to get annoyed with me asking him every 5 minutes how he’s doing.

I can only surmise that a “great” will be coming along soon.

I wish there was a magic shot for all of what ails us in Life or at least something to give us the inability to see the worst of the moment and answer “great” to every question regarding one’s disposition.

But there’s not.

Sucks to be us, huh?