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.