Summer Blog

By Sean Lehning:             

Summer is finally here. I look forward to playing retro video games with my dad (my favorite is Dig-Dug, because I am not good at the other games, especially Robotron, as I am not coordinated enough for its “shoot in all directions with one joystick and move in all directions with the other” setup).

I look back on a very rough freshman year. First I had a hard web design class (which I could not handle at all), but it was switched to an art class. Then the last part of the year was hard as the math class I was in moved into more advanced subjects (the class also doesn’t have a textbook). I also had all AP and honors classes, which was difficult.

                Socially, it was pretty easy (although I can’t have a girlfriend, because if I do all the other girls that know me will be sad that they weren’t chosen), but I had to say goodbye to a very special friend.

                I have only 4 merit badges and an eagle project to get Eagle rank. We are using the lessons learned from freshman year to make for a better sophomore year.

                But I remember the past I have left behind. I know most of you have less functioning children, but I was low functioning when I was born. I would never sleep at night, and I would have screaming tantrums and have to be restrained by my parents. I would freak out over little things (years ago, I saw a bug on a swing set and never went outside that summer). I was not functioning at all.

                But I improved, and I hope you can too.

Twelve Angry Men? No, Just Me

Hey everyone…

I know it’s been a long time.  Forever it seems.

I’m still around.  Still living life.  Sean is still Sean.

But something about me has changed….

I’ve been published a few times in a parent magazine and I had a chance to submit another article for consideration earlier this month.

I completely blew the deadline.

 I failed.  I utterly and fantastically…failed.

I tried.  Oh gosh how I tried.

After I wrote each piece I would ask my husband to look it over. 

“Tell me, honey…does it have the magic?”

But they never did.

“Too negative.” he’d say.

I know.  They were.  Even when I tried to put a good spin on them they still came out as if every morning I got out of the bed on the wrong side.

“But honey, I didn’t say I flew across the table and smacked her upside her head.  I only thought that….”

That particular line was in reference to a piece I wrote about a special education teacher adamantly proclaiming that Sean was “wrong” for not looking at people’s faces.

Wrong?

Seriously???

I really did at that moment want to smack her upside her head and it took everything in me to take some breaths and try to turn into a teaching moment.

There…. that was the positive spin I was looking for!

No… not according to my husband.  The piece was still too dark.

And it was.  They all were.

Finally I came to realize that I…this joking, laughing, smiling person…had become angry.

I am one angry chick.  I can smile and laugh through anything.  But beneath it all, it’s just one big fake out.

Internally – and externally – it seems as if I am fighting the world.

And it’s just not autism that I’m angry with or fighting against.  Sure, it ticks me off that you have the same issues all the time or that you’re dealing with truly ignorant, intolerant people…but that’s just Life.

It’s everything else.

It’s the mandatory rehearsals/Life be damned for my daughter’s chorus class… the calendar that fills up as quickly as you turn the page…the temp job that has gone on too long and sucks the life out of you…. the hip injury that just won’t heal.

It’s the no longer being able to look up and make a wish upon a star and naively believe it will come true.

It’s everything…. absolutely everything.

And it sucks.

I wonder if this is merely a phase like Sean lining up all his Matchbox cars in a row or turning in circles or is it a product of turning 45, cutting off my long hair and wondering what’s left in Life?

What is it that has changed me so drastically?

And if it is just a phase, then how long will it last?

How long before the anger subsides?

How long before the smile is genuine?

And how long, my friend, before I can write again?

Stranger Danger

Let’s talk about something that scares the heebie-jeebies out of me….someone mistaking something that my son….or any other disabled person…. has done or said as perverted, mentally ill or just plain wrong.

I remember an incident at a pool.  A man was obviously (to me) somehow challenged.  And please, don’t take any of my failed attempts to be politically correct as somehow disrespectful….

So this guy was staring and then later talking about getting his hair cut.

The problem being that there were young girls at the pool and a mom complained.

He was escorted out and asked not to return.

My son stares at times.  He can say things that have nothing to do with current or conventional conversation.

He will talk with anyone….even if he is completely unaware that they are not interested in sharing words with him.

Should he be escorted out? 

Will he be asked to leave one day?

What if we’re on an airplane and suddenly he has pain in his ears and since he can’t handle things like that, he has a meltdown?

Will the plane be diverted?  Will he be somehow secured in his seat?

What about on the bus?

When he has a confrontation or a meltdown…. will the bus driver pull over or change his route to get Sean home sooner?  Or will he call the police and have my son taken away?

Will those police… not knowing who he is or what his diagnosis is… taser him if he doesn’t follow directions?

These scenarios scare the crap out of me.

I’m a helicopter mom not because I’m afraid of what Sean will do.  Rather, I’m afraid of what the public will do if he gets overwhelmed or has an incident.

Isn’t that awful?  Absolutely awful?

I wish this world would understand our kids.  But they don’t… or at least not every single one of the 6 billion on earth does.

And then our kids grow up to be adults…taller than us…stronger than us.

What was a cute little kid talking to a stranger is now the creepy guy at the local pool.

What are we supposed to do?

Do I ban Sean from ever talking to a stranger again?  How does that help his social skills?

He loves talking with – mostly at – strangers.  He loves sharing his ideas…his opinions…his stories.

How do I teach him the art of conversation?

How do I teach him all those grown-up social skills that are so difficult for even typical adults to learn?

There are those adults and kids who “get” Sean and find him fascinating.  Sean is extremely intelligent.  He has views that most adults would find insightful and perhaps even entertaining.

But it’s that stranger…today…tomorrow… 50 years in the future… who scares me. 

We teach our children all about Stranger Danger.  We teach them not to talk to people they don’t know.

And in answer to that instruction, Sean will come back with a dozen reasons why he should talk to strangers.

How else is he to meet people?  How else is he supposed to get to know them?

How else is he to make friends?

And that’s what he wants to do most…make friends.

As his mom it kills me to tell him not to talk to people because amongst all who won’t understand him there might be that gem in the crowd.

There might be that one….that best friend who Sean so desperately wants to find.

Thus tonight we will talk.  We will try to teach.  I’m sure there will be tears.

And my heart will break because I know part of him won’t understand.

Wouldn’t it be easier if the world could simply understand instead?

Not Just Barney Loves My Kid

I argued one day with Sean about loving him…

Yep, another moment to put down on my “Mom of the Year” application.

“So, Mom…Do you love me?”

One simple question and I just snapped.

But it’s so much more than that.  Sean got into a groove where he asked me day after day all day long.  I couldn’t pass him in the hallway without him blocking my path and asking me.

“So, Mom…Do you love me?”

I would always sigh and say, “Yes, Sean.  Of course I love you.”

But then he’d ask me 5 minutes later…. or an hour… or a day.

It got so frustrating and I know I should be more understanding.

I know it’s just his autism giving him another quirk…another habit that he’ll have for awhile before he moves on to the next.

But it went on for months and eventually wore me down.

Will it ever end?  Will it ever stop?

Finally, after getting asked one more time on the way to my bedroom with a load of laundry, I had had enough.

I shouted.  I screamed.  I’m sure a few extra awful words were thrown in there as well.

“Of course I love you.  I wouldn’t have gone through fertility treatments, 25 hours of labor, and an emergency c-section if I didn’t love you!”

Probably not exactly what he wanted to hear but then again, I have yet to fill the blank space on the mantle with my “Mom of the Year” award.

I tried the other route and reminded him that I tell him that I love him all the freaking time…

And that I wouldn’t be there to help him every step of the way, with every difficulty, every meltdown, and celebrate his every accomplishment if I didn’t love him.

Then it dawned on me…

Maybe he doesn’t know that I love him.  Maybe he wonders. 

Does he really not know?

Is it possible his autism has stolen that feeling of security and love that a child feels from his parent?

Dang.

How am I going to handle that?

Hopefully, it isn’t that….

Please tell me it’s not…

Sean promised to stop asking and for the most part he’s been good about it.

Instead, now he says, “You love me and I love you.”

I picture Barney the over-sized purple dinosaur in my living room.

Maybe Sean’s reassuring himself…or me…

Maybe it’s a mantra that comforts him.

Either way, it’s OK with me.

I probably shouldn’t have taken it so personally when he asked me before.

I should have been more understanding…more patient…more everything.

But the one thing that I am absolutely positively sure of is this…

I love my kid with everything I have…

And if I had more then I would love more…

But then I’d ask for more…

More patience, more understanding…

But most of all, more love.

More love to give to my son…

More love to give to all those kids out there who could use a little more in their lives.

So go ahead and ask me, Sean.

I will reassure you.  I will hug you and hold you.

I will be there for every moment.

And I will love you… with everything I have…

And with everything I wish I had.

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?