Missing More Than A Name

7:44 am…

Ahhhh…. Silence.

It did not, however, come without a price.

I feel like I’ve become the mom that yells.

Our junior high has this amazing, information-overload system that allows me to check on everything for my kids from what they bought with their lunch card to their grades for the day.

It also lets me check for missing assignments.

Yep, you guessed it.  Sean has a missing assignment.

I can make so many excuses and, I admit, I did make a few.

Now, granted, I did not check the system until yesterday so I was blissfully unaware of Sean’s academic faux paus.  It takes awhile to get into the groove of doing things.  It needs to become a habit. 

I guess it’s kind of like that point sheet that I used to get home everyday from his day program or the phone call or email that I would get from his staff.

Since it’s all on computer, it’s the eco-friendly way of letting me know exactly what my kid was doing.

However, what he was thinking on that day that he missed his assignment is quite another.

Being the good, helicopter mom that I am, I emailed the teacher straight away.

“I know exactly where the assignment is.  It’s in his binder.  I’ll remind him to hand it in.”

Yes, it’s in his binder…. Losing points by the day.

I know about it because he talked about the paper the day he did it.  It was an in-class assignment called “If I Had Never Been Born.”

Not exactly what I would call a feel-good topic and certainly one that I wouldn’t even want to think about….

But it stuck with Sean and when we went through his binder on Friday, going through papers and deciding which can stay at home and which he still needs, Sean wanted to keep that particular assignment with him.

Little did I know that he never handed it in….

How did an in-class assignment NOT get handed in?

What was Sean thinking?  What was going on in his head that day…at that moment….when the teacher probably said something akin to, “Now class, pass them forward” or “Leave them on my desk as you exit”?

Thus, a missing assignment.

Now comes the yelling part.

It’s breakfast this morning… just about an hour ago. 

“Sean, don’t forget to hand in your paper to your teacher.”

“What teacher?”

“Mrs. Pe… Mrs. Something…. I don’t know.”

“Who’s that?”

My voice got louder….

“Your teacher.”

“What class?”

Do I grab the soda now and retreat or do I wait until a suitable hour… say 8 am… before I caffeinate myself?

Thankfully, I was able to go on-line and get the information I needed.

“Sean, it’s Mrs. X.”

“Who’s that?”

Walk away… just walk away….

So three weeks into the school year and my son does not know his teacher’s name.

He can remember everything about a video game.

He can remember obscure details from a book he read six years ago about some war.

He can remember to look up whether or not the local library has the movie “Waterworld” checked back in or not.

But he does not know or remember his teacher’s name.

It’s frustrating… really frustrating.

And it feels like I have to yell more to get through whatever fog is inhibiting my son’s brain function.

It’s not mad yelling… like an argument or something… although I think I’m doing that more as well.

No, as my parents would say, it’s “loud discussion.”

I’m beginning to believe that Sean only listens to me when my voice is raised. 

I could totally cop out and write everything down for him.  But he’s 13 and in 8^th grade.  He needs to start remembering these things on his own.  He needs to start taking responsibility for his own actions or inactions.

Sean got a D- on an assignment the other day and I am not going to fight it.  I am not going to make excuses for him.

He probably was in a hurry and skipped over half of the problems.

I can’t hold his hand every minute of the day.

He has to learn how to stand on his own.

So today I sent him off with instructions to finally hand in his assignment.  I yelled it to him at the kitchen table.  I yelled it to him as he left for the morning carpool.

In return, I got the typical, somewhat annoyed, “Okaaaaayyyyyyyy.”

We’ll see.  It’s up to him.  I have done what I could.

And I really don’t want to yell anymore.

I’m going to enjoy the quiet… enjoy the silence…. for a little bit longer before I wake up Ashley and start my day.

I’ll tell you about the watch… the brand new watch…and the really loud yelling another day.

Keeping It Real In 34 Minutes

Sean is yelling at me.

I’m not rubbing him the right way.  I’m talking with Carissa while he is trying to watch tv.

He wants to know when the laptops for the 8^th graders will be handed out.

He’s not happy how I packed his backpack this morning.

He fails to see why I am so elated to be able to find his mathbook on-line so he and his sister won’t have to haul theirs home every day.

He is aggravated with me and his world.

And I am aggravated with him.

Sean’s butt wasn’t even fully situated on the kitchen chair this morning and the words “rub me” escaped from his mouth.

Are you serious?

Are you friggin’ serious?

I have breakfast to make.  Lunches to make.  I have to make sure you don’t forget your gym uniform and your school ID.

I have to take care of the dog.

And you want me to rub you?

Now?

Oh my freakin’ god…

Side note…. Good Morning America just said that we spend more time complaining on Mondays than on any other day…34 minutes versus only 22.

Ya think?

So back to Sean….

I know he’s autistic and it’s simply a part of him.  But can’t he see…just once… that I am hugely busy and can’t concentrate solely on his needs right when he wants me to?

Besides, if I stopped to rub him then he’d complain that I didn’t have his breakfast ready.

I can’t win.  I really can’t win.

As for the laptops at school… How many times can you tell him that they aren’t being issued until at least the 18^th?  All he does is come back with complaints on why it’s taking so long.

It’s complain, complain, complain.

Constant.

I tried multi-tasking last night while rubbing him.  I had my laptop next to me.  I had things to do.  He said he didn’t like how I was rubbing him… that I was stopping and not paying attention.

We’ve tried to get him to see, not so much how difficult it is to rub someone constantly, but more so on how you have to stop what you’re doing – whatever it may be – to do it.  We’ve implemented a “rub you, rub me” policy.

And you know what?  Sean lasts about 10 seconds, maybe 15 at the most before he walks away from his turn to rub you.

And he complains how I rub him??

Really.

I don’t know what to do.

Nothing I do for him is good enough.  Nothing I do is fast enough.  Nothing I answer satisfies him.

And now he doesn’t even want me talking while he’s watching tv.

As if he ever stops his monologue while I’m watching a program….

I know being a mom is a thankless job and you get the crap end of the stick all the time.

But gosh, sometimes you just want to scream, grab a soda, and go on strike.

Or, how about simply being able to go hide in the bathroom for a minute without someone calling your name?

Being a mom is tough.

Being a mom to a teenager is even tougher.

But being a mom to an autistic teenager?

Where’s my soda?  My 34 minutes are up.   I’m outta here!

Because He's Sean

“So Mom… You know Ashley, right?”

The smart aleck in me always wants to reply, “Who?” but I try to keep the inner child in check and answer something to the effect of, “Yes, she’s your sister.”

“Yea, well, I love Ashley.”

“Good.  I’m glad.  And I’m sure you love Carissa as well.”

Sean usually then throws himself into some kind of monologue expressing his frustration over how Ashley doesn’t do such-and-such or understand things like he does.

“Sean, she’s 5.”

It used to be “She’s 4”…. Even “She’s 3.”

Both of the kids have grown tired of me explaining their little sister’s childish behaviour by simply pointing out how young she is.

I remember doing something similar with Sean.  Only then, I would say, “He’s autistic.”

It almost – no, it in fact – became a habit.  Something I would do without even thinking and, in time, something I would do before any excuse needed to be made.

It was like my safety net.

I’d get it out there before he would start kicking and screaming in public.

I’d announce it to the other parents before he became frustrated and tackled your kid out on the soccer field.

I’d say it in the beginning so you wouldn’t look at me like you do when something happens….

And you know you do…

The look could be with compassion but usually it’s more like, “Can’t you control your kid?”

The kids would come right out and ask, “What’s wrong with Sean?”

And I’d always answer, “His brain is wired differently.  Sometimes it takes awhile to understand things.”

The kids would be satisfied and nothing more from them would be said.  Sean would be accepted and life would go on.

But the parents… oh, the parents…and how they love to judge.  The glances, the looks, the whispers, and then the comments would come.

“Why do you insist on him being here?”

“He’s a monster.”

“He’s a disruption and is causing problems in the classroom.”

“My child isn’t learning because of him.”

“He needs to leave before he hurts someone.”

How can you call my child “a monster”?   What gives you the right?  Frankly, who the hell do you think you are?

“He’s autistic.”

But after hearing that, the ugliness never changed to compassion.  It never changed to understanding.

“He’s autistic.”

That word is more than a diagnosis.  It’s a lifestyle…not only for Sean, but for the entire family.

Can I go out and get a “real” job like everybody says I should?  No.  Between therapies and meetings and doctors…not to mention being available for all those phone calls from school… how can I hold down a normal 9 to 5 gig?

Are dinners simple?  Are any trips outside of the house, simple?  

Can I send him in the backyard?  Let him take his bike out?  Can I let him cross the street?

Can I send him to his room with instructions to clean it?  Can I tell him to take a shower without adding something like “Don’t forget to use soap”?

No, no, and no. 

Autistic does not mean simple.

But getting back on track, “autistic” is not everything about my son.

And it certainly does not bear enough importance in our lives to take the place of his name but, sadly, that’s what was happening.

I would say, “That’s my son.  He’s autistic.”

An excuse, my safety net, some kind of explanation… a plea for understanding…. That’s all that it was.

But it’s not who he is.

It’s not his name.

When I realized what I was doing, I knew I had to stop.

I named my blog as a reminder to myself…as a reminder to everyone.

We have amazing, wonderful children. 

Autism is a trait that they have – just like being blue-eyed or right-handed.

We would never think to say, “That’s my son.  He’s got brown eyes.”

So when Ashley is doing something that is so Ashley-like, instead of explaining to the kids that she’s 5…  I can say, “Oh, that’s Ashley being Ashley,” because that’s who she is.

And when Sean is doing something, I’ll proudly say, “Oh, that’s Sean being Sean,” because Sean is being exactly who he is… left-handed, gray eyes, autism and all.

The Have's of Life

“Rub me.”

Seriously?  You just walked out of the bedroom Sean and sat down at the table.  You haven’t even eaten breakfast yet.

“Rub me.”

I can’t.   Not now.

I have breakfast to make.  I have the dog to feed and let out.  I have lunches to make.

I have to email school.  I have to call the air conditioning repairman.

I have to get your gym uniforms from the laundry pile and put them in your school bags.

No, this morning I can’t rub you.

The “have’s” in my life are sometimes overwhelming and, admittedly, usually not something I want to do. 

But today I don’t have to rub you because I have a zillion other things on my list to do.

And first and foremost, is taking care of your sister.

Yes, sometimes in life, while you want to concentrate all of your efforts and time on your disabled child, you have to step back and take care of the other people in your life.

And today, it’s Sean’s sister.

She’s hitting her tween years in stride.  Slipping, sliding, totally out of control, laughing and crying every step of the way.

Her tween years – aside from being the opposite sex of Sean – are completely different than what we experienced a couple of years ago with him.

Sean couldn’t wait to get to junior high.  She cries every morning to get out it.

While he had “friends” who were more classmates than anything else, she has close friends, best friends.

And one of her best friends moved away this year.

After years of being transported in a cab or bus, he is relishing the independence of walking the half-mile to and from school.

She is struggling with the extra physical demands.

Add in the books, the gym uniform, the schedule, the math class, the soon-to-be, school-issued laptop…. She has the weight of the world on her small shoulders and she’s carrying it all in an ill-advised messenger bag.

I don’t know what I’m going to do.

I don’t know what I have to do.

Ironically, it’s easier with Sean.  You don’t assume he’s going to be ok with anything and thus you break his world into a million little bits and tackle one miniscule piece at a time.

Going to your locker, walking through the lunch line, changing out your books… everything is broken into its components and simplified.

Is that what we’ll have to do with Carissa?

Do we have to exam her entire schedule, her entire routine and break it down?

Like I said… I don’t know.

It’s funny how you’re so consumed and so used to living in the special needs world that you almost don’t know how to navigate and understand the typical world out there.

Is all this angst simply normal tween stuff and we were merely spared due to Sean’s diagnosis?

Were we so in-tune with him and watching for it that we were able to conquer it before it got out of hand?

Sean and Carissa have always been my little twins.  They were born 21 months apart.  Developmentally, Sean would mimic Carissa.

Now Sean seems to be hitting his stride and has left his sister behind.

So right now Sean, while I love you dearly, I can’t rub you at this moment.

But you’ll be ok….

I have to go take care of someone else at the moment… I have to take care of your sister… and that is one “have” that I will gladly undertake.