A Sandwich Wish

Sean doesn’t know how to make a sandwich.

Ok, let me back up…

We were getting ready to go to an amusement park.  Now, for me, going to an amusement park is one step above going for my yearly gynecological exam as far as the fun meter goes.  Being flipped over, flung every which way and spun until I puke lost its childhood enthusiasm when, well… when I puked.  Try sneaking your brother’s white Member’s Only jacket back in the closet after that! 

Needless to say, preparing for a day that I take part in strictly due to my relationship as a parent is a bit daunting.

Watching the weather, finding a dog-sitter, packing sunscreen and extra clothes are all given responsibilities for the day.  However, a day at the amusement park to fill my children’s mouths is also exorbitantly expensive.  Thus, we brown bag it.

And this is where the sandwich making comes in.

I have clothes to pack, shoes to tie, and my purse-to-fanny-pack transformation to undertake.  I didn’t think I was asking the impossible when I said, “Sean, make your sandwich.”

“What’s a sandwich?”

You’re kidding me, right?  My son, the Boy Scout who has made and eaten many a sandwich on campouts, wants to know what a sandwich is.

Really?

“You know… the thing you eat on campouts… with two pieces of bread and ham.”

“No, I don’t.”

Hoping that this was merely his early morning attempt at humor, I brushed it off and told him to go make it.

“Um, Mom.  What do I do?”

Crap, I don’t think he’s joking.

“OK, Sean.  First you go in the freezer and get the bread out.”

As Sean searched for the loaf, I entertained the idea of chucking the entire day out the window and going back to bed. 

“Then you open the fridge and get the ham on the shelf.”

Sean opens the drawer in the fridge.

“No, on the shelf.”

He again goes for the drawer.

My thought?  Oh, this is going to be painful. 

Step by agonizing step, as if we were literally going through one of those exercises in school where you write out every detail of opening a jar of peanut butter, we made our way towards the ultimate goal of stacking two slices of ham in between two slices of bread.

Eventually our precious creation was sealed in a bag and placed in the cooler.

I wondered all morning what type of culinary amnesia had come over my son.  Was it something that he wasn’t used to?  Was it because we weren’t out in the woods where it was our only sustenance?

Crazy as it may sound, could it even be the new air freshener that I installed in his room and the “adrenaline rush” that he claims to get from it that is causing this newfound absence of knowledge?

As I say so many times…. I don’t know.

I put it to the back of my mind and enjoyed the beginning part of the day as much as I could.  Fortunately, Ashley is too young to ride most of harrowing attractions.  Thus, I was able to happily keep my feet on the ground up until early afternoon.

But lunch lingered in the future.

No worries.  He’ll be hungry.  Whatever aversion he had will be overcome by a starving teenager.

After getting our hand stamped for re-entry and a leisurely walk to Tweety Row 32 to find the mini-minivan, we settled in for the quiet comfort of air conditioning, padded seats and the contents of the cooler.

Roast beef?  Check.  Peanut butter?  Check.  Bologna?  Check.

Ham?   Ham?

“Do I have to?”

“Yes, Sean.  That’s the only thing you have for lunch.”

He took a bite.  Maybe two.

Whatever was stuck in his head from earlier was back in full force.  It could have been the bread.  It could have been the ham.  It could have been the temperature of the sandwich.  Or was it the fact that it was made with clean hands on a clean countertop instead of with fingers that had deep inset dirt that comes only from being out in the woods?

I don’t know.

The resealed bag was tossed aside, never quite making it back into the cooler.  Luckily, it was found before becoming something that smelled worst than teenage funk.

The ever-present granola bars were retrieved and consumed. 

Life was back in balance.

Will I attempt the sandwich thing again?  Definitely.

Will Sean eat it?

You all know that answer as well as I do.

I simply don’t know…but I wish I did.

The Watch's Watchman

Hi everyone and welcome to back.

I’ve been away for several weeks.  Nothing catastrophic happened.  No crisis occurred.

It was just Life…

As parents, we all know we can get overwhelmed with all the schedules, the responsibilities, and the decisions that we have to make every day for our children.

However, as a parent of a special needs child or children, we can easily feel crushed beneath all of that weight.

These past weeks have been my time for not only bearing the load of the rock, but hiding beneath it as well.

It wasn’t the domain meetings, the yelling, the watch, the IEP, or even the funk that emanates from Sean’s room.

It was everything.

And I had to take what little bit of me that was left over, the little glimmer that still existed inside of me, and hide it away.

I was sick of sharing.  I was sick of doing.  I was sick of autism.  I was sick of the everything that comes with Life.

But I have some very dear friends that have poked and prodded and laughed me out of my hiding place. 

Thus, here I am.

The last time I wrote, I talked about becoming the mom that yells.  I ended the story with a cliffhanger about Sean’s watch.

That watch served as a daily reminder that I had left things unfinished.

So here’s the end you’ve so greatly anticipated….

You know how Sean loves to fidget.  And you also know how he loves to break things along the way.

I try my best to keep objects from him that are meaningful.  My first stethoscope from college and my favourite watch…. Well, I was too late for them.

Carissa’s things… Ashley’s toys…. They all have found their way eventually into Sean’s mouth.

Yuck.

And when he’s not chewing on things, he’s instead wrapping and tying and twisting them into unimaginable messes.

If you remember way back when, I gave Sean a watch – my watch – during the latter part of the school year in order to time himself while walking from class to class.  Otherwise, the little bugger would run… or “fast walk” as he would claim.

I don’t know what happened to my watch.  Was it sucked on?  Were the buttons played with so much that they simply needed to say, “Stop!  I will no longer work for you.”

Either way, my watch… my beloved watch… bit the big one.  It became yet another one of the sacrifices a mother makes for her son.

So off to Walmart or Meijer or Target or some other superstore I went this summer to buy school supplies and find the ultimate, hardy watch for under $20.

Why not spend more? 

In my heart, I knew this new piece of technology would sadly meet its demise as well. 

The only question was when….

Twenty days, my friends.  Twenty days.

It was at Carissa’s first cross country meet, standing in a field filled with other parents, when I noticed the watch was missing from my son’s wrist.

I prayed for strength to deal with the unknown as I formed the words, “Sean, where’s your watch?”

I was pleasantly surprised when he pulled it out of his pocket and said, “Here.”

And then I noticed the band.  Mangled.  Ripped.

Those fingers, made strong from fidgeting for years, had claimed yet another victim.

“Sean!”  I yelled and didn’t care who heard me. “What the hell did you do to your watch?”

“Mom, it was like that.  It was already broken.”

Is it human nature that when something is broken a bit, people are compelled to obliterate it?

“Sean, I am not buying you another watch.  We’re just going to have to figure something out.” 

I had visions of duct tape swimming in my head.

I was pissed.  I was livid.

And it wasn’t over some stupid $20 watch.

It was because it was yet another thing….another thing that was destroyed or chewed on or somehow altered by my son’s autism.

It’s the stethoscope, the watch, the collar on his shirt, the laminate on his bed, the other watch, the headphones, the earbuds, the straws, the fidget toys that were supposed to be indestructible, the exercise bands, the laces on his shoes… it’s everything.

And you say to yourself, “Why?”

Why bother buying stuff?  Why can’t he fidget with the things he’s supposed to?  Why do I feel like I have to constantly monitor what’s in his space or in his mouth?

Why is that my job?

The answer is simple.

It’s because I’m his mom and that’s what I’m supposed to do. 

While other moms are pressed into service to monitor their child’s emails and texts, I monitor the next thing that Sean will fidget with.

Considering the alterative, maybe my job’s not so bad after all….

They are, in the end, only things.  And if they keep him from tearing at his skin, I guess they are all worth it.

But sometimes, I do wish…

I would never want to change my son… change who he is.

But I would like, just for awhile, to be able to keep a watch in perfect working order for more than a month.

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.

Blame the Mirror

The clock ticks and off he goes…

Deodorant?  Check.

Watch?  Check.

“Mom, where’s my backpack?”

“Look down.”

I kiss his head as he passes by and off he goes.

Crap. I forgot to tell him to check in with the social worker.

Oh well, I’m sure he’ll track him down sometime during the day.

And thus, Day 6 of full-integration at the junior high begins. 

I dare to say that it’s going well. 

Sean is apparently getting from classroom to classroom without any problems.  He’s changing for gym.  He’s even beginning to navigate the hot lunch line in the cafeteria.

Even still, I am fraught with worry.

The worries are not consuming or debilitating like they once were.  I remember those years when I would almost break down the minute he entered the school doors.

What would happen today?

Who will not understand him and his behaviours?

What will be said to me when I pick him up?

Will they tell me that I need to be a better parent?

Will they tell me that my son is not autistic but simply a behaviour problem?

It’s difficult to forget those days.  I wish I could say that it was all due to ignorance because autism was not yet the household word that it is today.

Unfortunately, through this blog and my Facebook page, even being out and meeting people, I’m learning that those things are still being said to parents.

Why?

Why?

Do we not have enough to deal with?

Do we not have enough of our own thoughts and guilt to work through?

I was told that my son was autistic because I was going against God’s will by using fertility treatments.

I was told that if only I had taken my son to restaurants and “socialized” him more that he wouldn’t be like “this.”

I was told to put him in daycare, get a job and spend less time with him.

I was told to discipline him more.

I was told so many things… and so many of them were negative.

At least now you know why I would sit at my kitchen table day after day, paralyzed with worry, crying and feeling like crap.

Why was there so much blame when Sean would have been better served in those early years if they had simply helped him instead?

I don’t know.

And I don’t know if parents of children with other disabilities have such outward cruelty steeped upon them.

Because it really was cruel…

And it still happens…

Like I said, it’s difficult to leave those days behind.

It’s difficult when things go awry and that parental self-doubt seeps in.

Were they right?  Should I have put him in daycare and not spent so much time with him?

But then I think… Sean’s been putting on deodorant without being reminded for the past few days.

A two (or is it already three?) year endeavor in the making…

Whatever the time frame, it appears he’s finally doing it.

So to all the professionals, the former friends, and the family members who said all those things…

I must be doing something right.

It’s deodorant.  A baby step.  But still a step.

So give me some credit for trying my best.

Give me a hug because you could never know my world.

And give me understanding instead of blame.

Because I did nothing wrong.

And what I have… a wonderful, amazing, quirky, story-telling, funny, brilliant young man…

Is a gift…

And if you can see something wrong in him or me, then I can only wonder if you can see the wrong that’s staring back at you in the mirror.