The Road Behind

Almost the last day of the year and while I’m not one to look back, it might do me some good today.

It’s funny how I’ve always given that advice to friends but rarely take it myself.  I tell them – when they are facing an uphill battle, an unending stack of “to-do’s” – to look at all they have accomplished instead of the long road ahead of them.

So I will do that today…

Sean is constantly talking about what an amazing year he has had.  And it has been.  It really has.

He graduated from 8^th grade… started high school.  He’s navigating the halls by himself.  He’s doing well in his classes.

Sean even went up a rank in Boy Scouts.  He’s now at Life…just one step from Eagle.

Who would’ve thought?

I wrote in an article earlier this year that I never mourned the loss of Sean’s potential when he was diagnosed.  I went into it with the attitude of “Let’s see what he can do and go from there.”

And look how far he’s come….

Unbelievable.

A scene from a zillion years ago keeps flashing through my mind though.  It’s so real it’s as if I’m walking those steps now.

Sean was in second grade and still at our local school.  I would pull up in front, park my car and walk Sean and Carissa over the paved playground lot and send them in through the front doors.

The feeling that I was feeding my son to the sharks always left me unsettled on those days.

What was going to happen?  Because surely something would…

When was the meltdown going to occur?  When was the outburst, the desperate attempt to escape school going to make a good day into a bad day?  How bad was the bad day going to get?

It was always going to be something.

And I hated those mornings.  The joy of walking my kids to school became a test of sanity that I wasn’t sure I could take.

Was I doing the right thing by handing him over every morning?  Clearly, he did not belong in the school but where did he belong?  Who could help him?

And then 3:30 would come around and I would wait at the back doors.  They always let Sean out a few minutes early because he would run out and they felt he was a danger to the other kids.

Seriously…

I remember one of my girlfriends standing with me and saying something about the look on my face.

It was always stressed…always anticipating bad news.

With one look from the teacher or the school psychologist or the social worker through the window on the door, I knew I had to steel myself for what was to come.

What happened now?

Did he kick someone?  Bite someone?  Who did he push trying to get away from whatever it was that was so terrifying to my child?

What did they do to him now?

While years have passed and our lives have been filled with more steps forward than backward, those moments and feelings remain fresh in our minds.

Will they ever fade?

To hear Sean talk about his early years…about those times… you hear the pain in his voice and know that he is re-living every emotion…as vivid and painful as they were at that second in time.

It’s difficult to listen to, let alone walk those steps with him.

But then the channel in his head switches and Sean talks about how great 2012 was.

Yes, Sean.  Yes, it was.

You graduated from 8^th grade and we couldn’t have been prouder.

You started high school.

We’ve had our bumps and bruises.  We’ve had our calls to the crisis team as you escape to the bathroom to have your meltdown.

We’ve had our moments of wondering what to do next or if what we are doing is right or wrong.

But you’ve done good Sean.

You have persevered and worked so hard.

You’ve lost your pencil case twice – in the same day – and yet somehow got through to the dismissal bell.

You’ve survived bullying and the madness in the hallways.

And you’ve come home with a coat we’re not sure is yours…oh, and a pair of socks.

But you’ve done good Sean.

You have everything to be proud of as you look back at the year.

And so do we….

While the road ahead will always look far scarier than it actually is, the road we have conquered, that hard, bumpy, sometimes impossible road, is behind us.

We can always remember that road.  We will remember that road.

But look how far you’ve come Sean….

Just look how far you’ve come!

Screw Santa

“I’m nervous.”

I pause in the hallway putting a temporary stop to my quest to get the laundry done and put away before Santa comes.  Did I just hear something?

“Mom, I’m nervous.”

Crap.

I did.

“Yes, Sean.  What are you nervous about?”

“Tomorrow.”

I’ve had a rough day – my first attempt ever at making no-bake chocolate-covered, peanut butter balls (also known as “Reindeer Balls”) has failed miserably and I can’t even begin to think about my list of things to do.

Thus, I lose it.

“Sean, it’s Christmas *&!#@  Eve!  What could you possibly be nervous about?”

I’m expecting him to say something like the noise, the people, the food, leaving the house… anything that would be rational and understandable.

But no….

It’s something entirely different and something I can’t prevent or avoid.

Ah, but I can….

“Then stay home,” I tell Sean.

And I mean it.  I really do.  How many holidays do you just give in to autism or whatever disability your child has and say screw it, we’re staying home?

As people hustle and bustle about, buying this or that, cooking for hours on end, and traveling to far away destinations…

How many of us are staying home?

We can’t buy the latest in technology because all of our extra money goes towards therapies that aren’t covered by insurance.

We don’t travel because it’s difficult enough some days to make it to school let alone over the river and through the woods to Grandma’s house.

We cook but keep to the menu that makes sense to our kids and their texture issues

And we certainly don’t hustle and bustle about…not when there is a strict schedule to keep at home.

No… holidays with a disabled child are different.

They are simple.

Basic.

Sometimes they are little more than a date on a calendar.

Frozen pizza for Thanksgiving?

Done that.

And tomorrow’s menu for Christmas Day?

We’re having pancakes.

No turkey.  No plate after plate of Christmas desserts (Sean doesn’t eat much sugar).

No long car rides.  No airplanes.

No nothing….

Just another day…or as close to it as possible.

Sean will awaken at his usual early hour and dive into his Multi-Grain Cheerios, sans spoon.  He will pay more attention to his computer games than the presents waiting beneath the tree.

His sisters will eventually stir and our Christmas ritual will begin. 

Presents will be opened.  Some will be tossed aside, the excitement from when they were initially put on “the list” to now having seriously waned.  Others will be installed, plugged in, or played with right away.

It should all last about 15 minutes…maybe 20.

And then it’s back to life.  Back to normal. 

Sometime during the day we’ll stop by Grandma’s with Christmas wishes and to collect more loot.

But then it’s home.  Maybe we’ll get a movie from Red Box and watch it.  Maybe we’ll take the dog for a walk.

Maybe we’ll light a fire in the fireplace.

A whole Santa’s bag full of maybe’s but all carefully planned and carried out with the sole goal of getting through the day in mind.

Keep it simple.  Keep it quiet.

Keep it normal.

And as we sit down for our breakfast-as-dinner pancakes and look back upon our day, we will know in our hearts that Christmas is not about fancy food or unwrapping the latest gadget.

It’s about family.

So from my family to yours… we wish you a day full of routine and lacking in meltdowns….

A day full of gratefulness for the blessings in our lives…

And a day to be together – if not hand in hand then heart to heart.

Merry Christmas.

Where There's Mess There's Memories

Sticky fingers.

They have been everywhere in my house.  They have touched every surface, every light switch, every handle.

And I know who the culprit is…

Yep.

Sean.

While he has no problem eating his dry cereal with his fingers or picking up his meat or anything else that usually requires a utensil, he does, however, have an aversion to placing his hands under the faucet for a quick rinse.

Mind you… I didn’t say, “wash” because that would involve soap.

No… I’m just asking for a lightning fast run through a stream of H20 and wiping them off somewhere other than his pants or shirt.

Am I asking too much?

Is this merely a “boy” thing that I am not privy to because I lack the genitalia and really has nothing to do with autism?

I wonder….

In the meantime though I am hounding him at least a few times a day to go wash his hands.

And, as always, futile though it may be, I yell “with soap!”

If he knew how to roll his eyes he would.  Instead I get the sigh and the hanging head.  I can hear his brain asking, “What did I do now?” as if washing his hands was a punishment.

I’ve been a mother of an autistic child for almost 15 years and I am still amazed at how difficult the smallest things can be.

I have to admit though that something might be clicking in his head with regards to the stickiness of his fingers.

Oh gosh no… not like he would ever wash his hands voluntarily!

But the other day I caught him wiping down the light switch in his room.  Did he make the connection on why his light switch was so dirty?  Probably not.  But where there is one baby step there just might be another.

Who knows?  If this cleaning thing catches on he might start wiping down more surfaces…

Like the mirrors.

Oh, correct that.  Technically, he does wipe the mirrors after he splatters them with toothpaste or water but he uses his hands.

They leave the mirrors absolutely lovely.

Yes…lovely.

Now I know how custodians at department stores feel. 

Seriously???  I just cleaned that!

Every time I reach for the pantry handle and my mind screams a quiet “Yuck!” I think back to the days when the kids were younger.

They were sticky and messy and into something all the time.

Gosh I loved those times.  I miss them.

Maybe by leaving his mark everywhere Sean is reminding me of those times, bringing back those memories, making me relive those days when nothing was more beautiful than a freshly scrubbed face or tender as the tiny touch of a freshly cleaned hand.

Yep… that’s my boy….making me smile yet again.

Or it could be autism.

Or his DNA.

I don’t know.  I’m confused.

Let me think about that while I clean. 

Now can someone hand me the soap?

Can You Hear What I Hear?

Sean is stressed.

It’s 10:30 in the morning on a Sunday and Sean is stressed.

What about?

Who knows?

So many tears lately.  So many heavy sighs.

It breaks your heart and frustrates the crap out of you at the same time.

For goodness sake, what is it now?

School?  Homework?  Bullies?  A new video game?  Daylight Savings Time? 

Oh hell…. Tell me.

And… can it be important?

Yes, I know everything is important.  Everything is an issue.  Everything is a crisis when it comes to your kid having autism.

And it sucks.  Sometimes it really, really sucks.

But then again, every kid has issues – especially when they are 14 and a freshman in high school.

Only with ours, everything is magnified and it becomes an email to a teacher, a phone call to a principal, or merely hours spent dealing with it.

And deal we do…

Every day.

Day after day after day.

My husband and I have this understanding.  It’s almost like a Good Cop, Bad Cop thing.  If I’m crabby and at end of my frustration level with Sean then he has to step in and takeover.

We can’t be crabby at the same time.  We can’t both be having bad days.

I guess maybe that’s good in a sense…

But back to the issues…

Our high school… for some unknown reason…blares music during the passing periods in between classes.

Yep…. loud… very loud….music.

I’ve been there at some of these times and it’s an assault on my senses.  I can only imagine what it does to Sean.

Rumor has it that they do it so the kids will go from classroom to classroom quicker and not linger in the hallways.  The music stops one minute before their next class starts.  It’s a sign that they need to hustle. 

Well, the kids do that but they also talk in the hallway.

Oh, wait… correct that… they SHOUT in the hallway because simply talking is out of the question with blaring crap coming out of every speaker in sight.

Sean has been complaining about his ears hurting.  I thought it was because he tends to slap at his ears when he’s nervous (and he’s nervous a lot nowadays).

But then one day he was crying.  And the issue of his ears became an even bigger issue.

We’re hoping to find the right person to contact to get the music toned down or turned off.  I went to the same high school years ago and we only had a warning bell that sounded with one minute left to get to class.

Nothing else.

Why can’t the kids of today enjoy the same controlled chaos that we had years ago without the threat of being deafened?

But the high school is a big place….

And I’m really sick and tired of teachers and administrators pulling the “Well, I’ve/we’ve been doing this for years (and know better)” crap.

Seriously, give me ONE good reason for the music…. ONE!

It’s not Mozart or anything classical, which supposedly helps the brain.  It’s not anything but loud.

And now it’s an issue. 

 

Sean is currently wearing earplugs when he's in the hallway.  You know... those industrial noise reduction ones?  They are on a string so kids think they are ear buds and that he's listening to music.  We recently bought him a box of 100 pairs.

 

Maybe the music is an issue for other kids as well and they either haven’t told their parents or their parents are thinking someone else will complain for them.

I guess that “someone” is me.

I’m beginning to feel like the Angry Bitch all the time.

Why is it my fight?

Why do I have to call people out when they wrong a child?  Why do I have to be the one that contacts the school board or the administrators?

Why do I have to do it all the freakin’ time?

Why can’t I just sit back and let someone else do it?

I have to do it because he’s my kid.  Because he’s Sean.  Because he has autism.

And many times, what is best for him might also be best for other kids.

So stop the music.  Stop over stimulating these kids in an already stimulated environment.  Let the kids talk and laugh and enjoy their few minutes in the hallway.

And let me enjoy my few minutes…. just a few… when I don’t have to deal with everyone else’s issues.

Because you all know I have enough issues of my own to deal with!