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.

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.

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.

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 6^th 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?

Sean's Angels? No, Just Mom

7:32 pm Sunday and Sean is already in bed.

Yes, he’s cold.  Yes, he has a fever.  Yes to sniffling, sneezing, coughing, and an achy head.

And yes, this is not normal.

Sean almost never gets sick.  Unfortunately, this illness still seems to be on the path to getting worse before he gets better.

It’s difficult when your child is ill.

But it’s more so when your child is autistic and can’t quite grasp the words to describe the symptoms they are experiencing.

For example, Sean’s been dealing with an earache for weeks now.  Could it be a clogged ear?  Could it be a result of his braces being tightened and his jaw swelling (thus causing the ear pain)?  Could it be that he stuck something in there and damaged it?

I say it so often but you all know it’s true…

I don’t know.

And to ask Sean – even though he’s academically at grade level and an extremely vocal kid – is almost futile.

“Sean, does your ear feel clogged?”

“It just feels weird.”

“Does it hurt on the inside or the outside?”

“It just feels weird.  You look in it and tell me what’s wrong.”

It’s frustrating and heart wrenching all at the same time.

Monday…

Sean had an OK night but his fever has hit an all-time high of 102.7 degrees.  He’s shivering, coughing, his chest hurts, he’s not eating… and yet when I ask him how he’s doing, he answers…

“Great.”

As if Sean would answer anything else!

I don’t mean to be disrespectful, but it’s almost as if you have a toddler or a baby again.

Remember those days when your tiny one would be screaming and crying for hours?  They would be fussy and you would have no idea what was bothering them.

And remember how you would say, “If only they could tell us”…?

It was frustrating back then and it’s frustrating today.

The only difference now is that you are less quick to run to the doctor’s office with every sniffle or sneeze.

No, today you have to be the great detective and figure out if the 7:30 pm bedtime is due to teenage fatigue or an illness.

Is he crabby because he’s being normal like the rest of us and having a bad day or is he not feeling well?

And his voice volume… Sean’s volume has always been loud.  Could it be possible that it’s even louder today due to some ear thing going on?

Let’s not even go down the allergy versus illness path…

Recently at home we’ve been talking about the 70’s television show Charlie’s Angels.  I’m beginning to feel like one of those female detectives - without the benefit of Farrah Fawcett’s hair and body - while trying to figure out what exactly is wrong with my son.

But there is one clue that overrides all of the “greats” that Sean can dish out.

Autistic or not, he’s still a growing teenage boy. 

If he’s not on his computer then he’s in the pantry – and I’m yelling at him for both.

Thus, when he walked away from breakfast after only a few spoonfuls of Cheerios and then from lunch with only a half dozen Wheat Thins, I knew a visit to the doctor was imminent.

We’re not famous television detectives with gorgeous hair, model-thin bodies, and driving around in fabulous cars.

We’re better.

We’re moms and dads and caregivers.

We know our kids better than anyone else.  What we lack in book knowledge, we more than make up in intuition.

It is our instinct to know our children. 

Some may say that I have a special connection with Sean.

I don’t doubt that’s true because I am an extension of him.  I have to feel what he feels.  I have to anticipate his every move and reaction.

And when he says he’s “great”, I have to know when he’s not.

So to my son… my little boy…. I hope you get better soon.

Love,

Mom

Giving Thanks....

OK, so you know that pity-party I was having the other day about my kid suddenly not needing me anymore?

Yea… that lasted…oh, I’d say until about 3:30 that day.

That was when I went on-line and saw his grades.

Seriously?

My kid needs me…badly!

Or maybe it’s just like the “new” math and we have a new grading system.

“F” now stands for “Forget about it.  It’s not important.”

“D” means, “Don’t worry.  I have you covered.”

Now mind you, these aren’t his final grades.  No, that would result in a much different blog post!

These are his grades for his daily, in-class assignments.

Yes, you read that right… in-class.

And all of this is not entirely his fault…or mine…or his teachers’.

Sean attended a school for special needs children for five years.  The staff to student ratio was sometimes less than 2 to 1.  Thus, he had incredible attention paid to his every move.

However, he never got into the mindset of having to independently hand in his work at the end of class when he transitioned to being a “typical” student.

You would think that the teacher stating that everyone should leave their papers on her desk as they leave would remind him to do so.

Or seeing all the other students go up front with paper in hand and then returning without, would jar his thought process.

But it doesn’t.  Sean, at that point in class, is probably thinking about the ten or twenty things he has to do for his next class, the next day, or even New Year’s Eve.

In other words, Sean’s mind has left the building…or at least the room.

Now we have to change Sean’s way of thinking.

I would rather tackle climbing Mt. Everest or solving the global economic crisis, as they would be far easier to achieve.

If I can’t convince Sean to wear long pants in the winter without me constantly nagging him, then how is he going to learn to hand in his assignments without me being there?

How?

Can I say it?  Please??

I don’t know!!!

The “team” that consists of school staff and Rich and myself are going to try to get Sean into a new routine of checking his grades on-line in order to see what he is missing.  In “official” speak, we are going to try to be proactive instead of reactive.

It is a journey....

Will it work?  You all know the answer to that…

It’s frustrating for us because oftentimes those missing assignments are right in his binder, losing points for every day that they continue to reside there.

We know he’s done the work – and probably fairly well.  Sean gets frustrated when we ask him about the missing assingments.  He claims he doesn’t even know what we’re talking about.

For a kid who can describe minute details of things that happened years ago or had the ability to recite 15 to 20 minute monologues verbatim after hearing them when he was barely older than a toddler, Sean can’t remember a worksheet that he did last Thursday.

We’ll figure it out.  We always do.  And then there will be a new issue.  That is the one guarantee in the special needs world.

Keeps life interesting, doesn’t it?

And now speaking of Life… pardon the awkward segue way but I must…

Here in America we will be celebrating Thanksgiving on Thursday.  It’s a time for people to come together and give thanks for each other and be grateful for all that is wonderful in their lives.

I will be sharing the day with my family and thinking of all those who have made my life so amazing – especially this past year.

My friend who pushed me to begin this blog told me to ignore the numbers that show how many people check in to see my post.

However, the numbers are, for me, somewhat staggering.

I’m just a mom from the Midwest who writes little more than a diary and puts it up on the Internet.

That “diary” has made it’s way onto screens in over 700 cities in 53 countries.

I can’t even express how mind-boggling that is.

However, I can tell you that when I was having a meltdown, you were there.  And when I write a post and hopefully somehow connect with someone out there, I am happier than I’ve ever imagined I could be.

So this Thursday, along with being grateful for countless other blessings in my life, I will be grateful for how my life has changed.

I will be grateful for the friend who shoved me into this world and made me promise no regrets.

I will be thankful for my family who in some small way still need me.

I will be grateful for the family and friends who have given me grief when I wrote too much, bugged me when I wrote too little, and who sometimes hid from me when they knew I’d ask them if they read my latest post.

And I will thankful for all of you.  You have reached out to me.  You have listened to me.  You have shared your world with me.

A post on facebook the other day said something to the effect that “regular” moms get to share coffee face to face with their friends while “special needs” parents share only user names in on-line support groups.

We have done more than that. 

We have shared our laughter, our fears, our successes and failures.  We have shared our tears… both good and bad.

We have shared more than just a cup of coffee.  We trust each other enough to have shared our lives.

And that, my friends, could not be more special to me.

To the one, the many and each and every one of you out there… with all my heart… Thank you.

Waiting For The Wave

I really need to stop being surprised by what Sean does…

Yes, when I picked him up for a short orthodontist appointment this morning he did bring along everything as if was going home from school for the rest of the day.

And yes, even though it’s 30 degrees outside he’s opting to go about wearing only a t-shirt and then complaining that he’s cold.

But I was really floored by an email I received earlier today from his counselor at school.

Now I know what you all are thinking…

It’s where I go every time the phone rings or I see an email from school….

“What did Sean do now?”

But today was a good thing. 

This year Sean’s counselor has had him attending a group session on Fridays during lunch.  Certainly, that is nothing new.  He’s been in group and individual sessions during school time for as long he’s been autistic.

I’m not sure why Sean did not take to the group session like he’s done in the past.  Could it be that he was missing out on all the action in the cafeteria at lunch?  Could it be that they weren’t playing strategy games like they’ve done before?

Or could it be that he simply wants to appear “normal” for once?

We have always, always made Sean’s autism out to be a positive thing.  And he’s proud of his diagnosis.  Sean embraces his differences…his uniqueness.   It’s his confidence in himself that has gotten him so far in life. 

Sean doesn’t want to be cured because he feels… and we feel… that there is nothing wrong with him.

Sean is perfect just like he is.

Of course it would be nice if he would use utensils when eating spaghetti or say something other than “Great”…

But he’s my kid and I think he’s amazing.

So I should not be surprised then that he went to his counselor this morning and somehow explained to him the reasons why he no longer wanted to participate in the group session.

And they agreed.

Wow, imagine that.

Sean fought his own battle and won.

He had been coming to us off and on for weeks saying that he didn’t understand why he had to be in it.

We always figured that it was in his best interest to participate.  After all, it was a social skills group. 

What texting-at-the-dinner-table teenager doesn’t need one?

But Sean wanted no part of it.

I could beat myself up and say that I failed as his mother to listen to him but I refuse to go there…or at least not this time.

I thought we were all doing something that was good for him.

Now that he’s growing up, I guess he’s deciding more and more what he wants.

Those words are really hard to digest.

He’s growing up.

Wow.

While I will still maintain that wearing a jacket in 30-degree weather is better than not, I will trust Sean with this one issue.

The new arrangements will be a one-on-one session where they can talk about different things.  I’m sure Sean will be thrilled.

I can only be left wondering what lies ahead.

One day it’s a futon in his room instead of a train table and the next day a grown-up discussion regarding a social skills group.

What will tomorrow bring?

I don’t know.

How often have I said those words?

I don’t know.

But I do know this… my special needs child is beginning to not need me so much.

It feels like that first time your kindergartner forgets to wave good-bye to you as they walk into the school.

It’s thrilling.  It’s heartbreaking.  It’s knowing that they are growing up and that there is nothing you can do about it. 

That’s what I feel today… there’s nothing I can do except stand there and wait for him to wave.