Home, Sweet, Ugh Go Take A Shower, Home

My husband said he hadn’t seen me smile like that in a long time…

Really? 

I hardly noticed my facial expression.

The only thing I could think of… the only thing foremost in mind… was seeing my son Sean walk through the door and say, “Hi, Mom.”

And he did…

And I smiled.

Sean just got back from his first Boy Scout camping trip without a parent.

Yep, you read that right.  I actually let him go off into the woods and spend almost a full 48 hours without me or my husband.

And no… I was neither high nor drunk when the decision was made.

Sean had been talking about it for a while.  I swore it was never going to happen.  It wasn’t even in the realm of my deepest imagination.  But when my work schedule and Life collided, the thought was born.

Camping…Without us?

No… not in my lifetime.

But it did.

And Sean was thrilled. 

Of course upon his arrival back home he looked to be in layers of clothing and was absolutely filthy but a good shower and a change of clothes would fix that.

The bottom layer looked to be the same outfit that he left in on Friday… Hmmm…. Was it the forgetfulness of an autistic child or the typical poor hygiene of a teenage male?

I wonder….

Either way off he went to get clean with a shouted reminder to use soap…lots of it.

Ahhh…. It’s good to have him home.

Once he was showered and changed – and reminded to put on deodorant – Sean shared some of the weekend with us.

Did he sleep well?  No.

Did he eat all the stuff we sent along with him in case he couldn’t eat the camp food provided due to texture issues?  Yes.

What was the worst part?  Mom and Dad not being there to always rub him.

What was the best part?  Mom and Dad not being there to constantly watch over him.

Oh stake through my heart my little boy didn’t pine away miserably for me!

I can’t believe he spent the weekend camping without either one of us. 

Actually, truthfully, I can.

Sean is an amazing kid.  He always has been. 

But who would have thought?

I’ve tried to think about it in terms of his first day at the junior high.  I wasn’t there to hold his hand or make sure he had the right books for the right class.  I wasn’t there to make sure he ate his lunch or to help him navigate the halls.  I wasn’t there to remind him to wash his hands.

But he does it all… with the exception, of course, of washing his hands.

Sean has been pushed to see how far he can go and he’s never failed.

He’s tripped and fallen.  He’s had a meltdown after a really bad day.

But he’s always demanded to go back and try again…. Even when I didn’t think it was a good idea.

Then again, it really is my own over-protectiveness that at times seems to limit him.

Sean doesn’t see limits.  He wants it all.  He wants to do everything.

And you know what?  After this weekend, I think he will…dirty hands and all.

Look Mom! Yes Hands

“Well, I kinda sorta looked….”

Really?

Seriously?

And you wonder why my friends think I should be medicated full-time…

Six weeks from now Sean will be turning 14 years old.  Surely, most kids his age are riding their bikes in the streets and exploring places without direct parental supervision.

Why then as I’m sitting in a chair on the driveway, my cross-legged appendages feverishly swinging back and forth, can I barely contain my nerves as I watch Sean ride his bike into the street?

Why?

Because he only kinda sorta looked….

I can understand not looking at people’s faces due to his autism.  I can understand that and so many other things.

But seriously Sean, you need to look!!!!

Luckily the infraction of making a left turn onto our street without even so much as a glance backwards occurred within viewing distance of my home and boy, did I ever give it to him good when he pulled into the driveway.

“Yea, well, I looked before.”

“Before what?”

“Before that runaway bus streaked down our road???” my mind shouted.

O…M…G…

Now I know that just getting our kids to ride bicycles or passing any “typical” milestone is a big deal and I really should count my blessings that Sean is so high functioning.

But that also comes with a conundrum and a price that I’m not always willing to pay.

Do I let him go off on his bicycle and risk all the horrors that my mind can imagine?  Or do I keep him doing the same small driveway-to-driveway loop that his 6-year old sister is beginning to master?

I think to Carissa…Sean’s 12-year old sister.  Would she look?  Does she look? 

Oh the horrors of parenting!

I’m just as overprotective of her as I am of Sean. 

Carissa will roll her eyes and give me the “Oh Mom!” when I insist upon watching her cross the street down at the corner.  I’ve reluctantly given up trying to watch every step she takes as she walks to her friend’s house but I still do quietly cry out “Don’t run” when she kicks it into high gear.

What if she fell?

What if??

Of course if I gave into that question I would never let any of my children out of the house.

So I won’t…. give into the question that is… because two days into Spring Break and the idea of not letting them out of the house is the essence of insanity.

But I will try and get it into Sean’s head that he has to be aware of his surroundings.

Autistic or not, he has to look.

I thought my little overbearing-mom-lecture mini-freakout on the driveway would have made an impression on him until we were exiting a grocery store later in the day.

Sure enough, Sean walked out the door, gave a quick glance at who knows what, put his head down, and began to walk out into the parking lot.

“Look up!” I called to him as I threw my arms up – half out of futility and half out of prayer to some unforeseen Autism Angel.

“Look up.”

Am I frustrated?  Yes…  It is yet another thing to add to the daily lessons that go into sculpting Sean.

It’s difficult to know just when to let him go and find his own way and when to keep him close to you.

I guess it’s instinct.   Mamma Bear protective on my part.  Autism on his. 

Tomorrow the weather turns nasty so the bikes will stay inside.   After that I can’t exactly say when I’ll let him venture off the driveway again.

As for the parking lot… one of the things I love about Sean and his autism is that he still likes to hold my hand.

And I’ll take Sean and everything wonderful and scary and complex about him and his hand any day!

Shoelaces, Soap and Letting Go

As I sat here this morning, thinking of how I’m wasting precious minutes of my life while untying the multitude of knots in Sean’s shoelaces, I could only think back to that first blog entry from just over a year ago.

I wrote about how I one day picked up Sean’s shoes and discovered a normal double knot instead of knot after knot until the laces were at their very ends.

I was surprised, shocked, at how this seemingly normal habit had crept into our lives without me noticing.

A year later that “normal” has disappeared and once again we are back to one of the unique aspects that comprises my wonderful son, Sean.

I used to untie his shoes on a regular basis so he could practice tying them.  He has fine motor difficulties and it took him years…and finally his occupational therapist…to ultimately achieve independence from Velcro closures.

Once he learned, he never wanted to do it again and thus would tie his laces into a plethora of knots in order for them to never come undone…ever.

That is, until I would sit one morning with time on my hands and ruin whatever fingernails I had trying to undo my son’s minor obsession.

I’m not sure when the knotting began occurring again.  There have been bigger issues to deal with… more important fights to fight.

There always are, aren’t there?

So let him knot away.  Have at it.  His new shoes have already begun their journey with Sean’s fidgety fingers leading the way.

As for other battles that I can think over the last year….

Remember the liquid soap?  Kryptonite.  Absolute Kryptonite. 

I gave up that battle as well.  Is it worth torturing my kid so he can fit in with society’s bathroom norms?

Seriously?

I’ve tried different things over the year.  One was to simply drag him into the bathroom every day and try to de-sensitize him. 

Sometimes I wondered if we treated our prisoners better than I was treating my own son.

Thus, I gave up.  I shouldn’t say forever but for now, I have other things on my plate.

Sean’s currently taking a “Life Skills” class… think “Home Ec” for us oldies.  He asked for a bar of soap to take to school so he could wash his hands in class.

 

Wow…. solid thinking there.  Independence.

I was impressed.

Of course, I tried to convince him to just suck it up (ok… I’m not mom of the year here…) but he said no and I respected his wishes.

I did notice that he had used it.  A win for not only Sean but for any mother of a teenage boy!

I look at him now, on the verge of graduating from 8^th grade, and I get anxious about his future.  How will he do in high school?  Will he find friends?  What life skills will he be lacking along the way?

I can only anticipate the battles and worry so much. 

And I’m tired.  Always so tired.

Thus, I will let Sean tie his shoes in whatever manner he pleases.  I will let him wage war against the liquid soap industry.  And I will try to guide him and support him, teach him, throughout his life.

But it’s time to start letting go and giving him the lead.

He did, after all, come up with the idea of taking a bar of soap to school for his class all on his own.

It was something so normal, so independent, surely a sign of him growing up.

Just like when I picked up those shoes a year ago and looked at the “typical” double knots, when, Dear World, did that happen?

My Mom's Coping Skills.... by Sean Lehning

  NOTE:  I thought I'd do something different today and let Sean speak for himself....  Enjoy. 

           Sometimes, people annoy and irritate me with their words and actions. Sometimes, that person is my mom. 90% of the people in my life have done something at least once that I didn’t like. But that’s mostly because I only see that other 10% for a short time each day or don’t interact with them much in general.

My Mom annoyed me today when Ashley, my 6-year-old sister who went with me to music therapy today, had a meltdown near the music therapist. My Mom smiled a fake smile. She says she does this to be positive in a negative situation. To me, when she smiles in a negative situation, it seems like she’s pretending the bad situation is just a cruel joke of sorts. 

I have two general rules for my facial expressions:

1. When something exciting happens (being rushed in a game, playing an intense sport), I smile
2. When something bad happens (a pet dying, hearing bad news that personally affects me), I look angry and sad at the same time.

So when something bad and exciting happens, I smile like a madman. It’s just natural to me to make an expression like that. But I’ve never really gotten why Mom fakes a smile when there is something bad going on.

Now I know. But I don’t care. Because I am very tolerant of what people do and say. I accept people for who they are, because I know what’s it’s like to criticized for being you as an individual. I can put up with other people’s crap for so long, and when I can’t, I’ll meltdown for a few minutes then go back to normal.

I’ve never really bothered to ask Mom why she fakes smiles in bad situations, but now I know she is just trying to be positive. And I can accept that. If that is how she copes with bad situations that way, I’m okay with it. Because if it works for her, I’ll be happy she deals with the situation instead of just sitting there. I learned something about my mom today that satisfied one of my questions, and I love her, regardless of how she deals with bad situations.

Hooters Therapy

Sean likes girls.  He’s said so.

In fact, he’s said it many times.

About every 20 minutes type of many times.

Yep, he likes girls.

The only problem is, is that he doesn’t look at girls.

Talking with them?  Having an actual conversation with them? 

Yea, right… are you kidding??

Let’s start with just looking and we’ll leave the rest for later.

Sean differentiates people by the sound of their voices.  At times his system has found its flaws… a woman with a lower pitch or a pre-pubescent boy.  But over the years his way has served him as well as can be expected.

Thus, the idea… the need… to learn to look at people fell to the wayside.

Now girls are saying “Hi” to him in the hallway.  They say “Hi” to him at his sister’s basketball games.

He’s even made the bathroom wall…. I (heart) Shawn Lehning.

Awww… if only she knew how to spell his name….

So who are these girls that have sought out the company of my handsome son by uttering one simple two-letter word?

Sean has no idea.

Why?  Because he doesn’t know what they look like.

He couldn’t pick them out of line-up interspersed with NFL players.

Heck, he doesn’t even know their names.

How crushed would the female population of 13-year old girls in Elk Grove Village be if they knew that their great love didn’t even know their names, let alone if Sally has red hair or was that Molly???

He’s completely unaware of his heartbreaker status.

So with that in mind, as well as a gift card to a local Hooters restaurant, we charged Sean with one simple task…

LOOK at the girls.

Laugh all you want but amongst all the therapies out there… all the things we parents have tried… all the hype that we have bought into… this scheme is crazy enough to work.

It didn’t.

But he did enjoy himself enough to say that he wanted to go back.

He said the food was good.

Ugh....

My boy goes to Hooters and talks about the food.

Seriously???

A bonus was when an employee noticed his gymnastics shirt and commented on it.

WOW… an opportunity for conversation!!!!  With a girl no doubt!!!!

Yea… that didn’t work out either.

As Sean summed it up, “Conversation failure.”

I look at it this way….

The total meal before gift card was $34…. A heck of lot cheaper than therapy, less paperwork hassle and it included food.

The employees were nice and friendly, very professional.   I certainly wouldn’t have to worry about them teasing him or breaking his heart like 8^th grade girls would tend to do.

He did, in fact, work on his independence and communication skills by ordering his entire meal himself.

And for once Sean didn’t complain about going out of the house…especially since today was his first day off of a weeklong banishment from the computer for disrespecting me.

Sounds like a win-win situation all around, don’t you think?

This “Hooters Therapy” might just work out after all.

Now the only question remaining would be…. 

Will my insurance company cover it???

Hmmmm….

A Valentine's Day Bully

Bullying…. You hear that word as a mom or parent or guardian of a disabled child and you go instantly to a dark place.  Your blood pressure rises.  You forget about everything and everyone around you.  You want to find out who and, to be adult and responsible and politically correct, give them a piece of your mind.

But you also want to protect.  And the helplessness when you can’t is something that you don’t ever want to bear.

Today is Valentine’s Day.  It’s supposed to be a day of love and caring… sharing one’s feelings with each other.

It’s also a day where a kid… any kid… can get bullied.

And today it was mine.

It’s difficult enough when your child gets bullied at school and they know exactly who it is.  They understand what’s going on.  They know it’s happening.

But for mine, and maybe yours as well and countless other kids out there, they don’t know or understand.

Hell, mine can’t even describe to you who it is.

Frustrating.  So frustrating.

How do you teach sincerity and trust to your disabled child?  Better yet, how do you teach them at this age insincerity and distrust???

Teenage kids are masters at lying and manipulating.  Absolute masters.

So how then do we teach our kids to know the subtle differences? 

How?

Sean’s Life experience adds up to a few years of mainstream school, years in special education, and hour upon hour reading about things in books and on-line.

He is hardly prepared for the viciousness of the junior high crowd.

Heck, on some days, I’m not prepared for the stunts they pull or the things they say when I run into them around town.

How do I prepare him for a kid making fun of him when Sean doesn’t even realize that he’s being made fun of??

How do I go to the school and say something in the hope of protecting my child when Sean can’t even tell me anything about the boys who did it?

Sean doesn’t look people in the eye when they speak.

He doesn’t look at people at all…

Sean identifies people by voices and in the Peter Brady world of junior high, voices are difficult to define.

So what am I to do?  What are any of us parents, guardians, friends, therapists, people who care, supposed to do?

I guess we hope.  We pray.

And we teach our child as much as we can.  We have them experience Life outside of their own world as much as possible.

And we’re there for them. 

We can’t physically watch over them 24 hours a day.  We can’t raise them in a bubble or in a constant state of monitoring.  But our spirits can be with them and hopefully that little voice inside of them will help guide their way when it comes to unpleasant and unknown situations.

Unfortunately, bullying is part of growing up and it’s even worse now than when I was a teen.

And I wasn’t autistic.

We can only do what we can… and when we set our minds to it, parents and guardians of disabled children can do just about anything…

So with fair warning….

Don’t mess with Mama Bear boys... because Mama Bear is pissed.

Mr. Know-It-All

Today I am taking my son’s advice and just writing.

Sean’s been begging me for weeks to post something on my blog.  Just about every day something will come up and he’ll ask, “So Mom… are you going to write about this in your blog?”

I generally answer, “No, honey.  Not today.”

But I should… I really should.

The other day he asked me what was wrong.  He senses that I am stressed all the time.  I told him that with everything going on that my mind was too jumbled to put two thoughts together…let alone, write an entire entry.

So then he told me to write about that….

Nice, I get called out on the carpet by my own 13 year old kid.

The year of 2012 has sucked.  There really is no better word for it.  Although I could certainly use a lot of other words to describe it!

My 80-year old mother hurt herself New Year’s Eve.  Then, under my watch, she found herself – and her head – being bounced out of a revolving door.

You want to talk guilt???  Let’s talk guilt.

Ugh.

Modern medicine and my mother’s thick stubborn skull – although it might have been that babushka she was wearing – saved her mind and spirit and she has mended quite well.

But then Smokey, my 15-½ year old German Shepard/Boxer mix, took ill.

And then she died.

It was heart breaking.  It was awful.  One day she would eat and the next she wouldn’t.

Sean… I don’t know why…. But he has this sixth sense about him.  And he’s frank about it…so frank.  Out of the blue one day, he just came out and said, “So Mom, Smokey’s…um… dying.”

“Yes, honey.  She is.”

“Oh, well that’s OK.  She’s lived a good life.”

And that was it.  No real emotion.  No tears.  No sadness to his voice.  But I knew he knew.  And I knew he understood.

When that night finally came and Smokey, surrounded by the five of us, breathed her last, Sean stayed calm amongst the overwhelming emotions of the moment.

Was he being autistic or simply strong for his family?

I needed to stay home with the girls and Rich couldn’t possibly take Smokey to the animal hospital by himself so Sean went with.

I think father and son bonded on that final trip with our beloved family pet.  Rich said he told stories about Smokey being a puppy…. and what a naughty little puppy she was!

It was only weeks earlier that Sean admitted he had let Smokey take the blame for the wallpaper being torn off the wall in the kitchen.

When they got to the animal hospital Rich took Smokey out of the car.  She was stiff…. something I wanted to shield the girls from.

But Sean… sweet Sean…. took note of it.  He said as he always does when Life actually mimics what he’s only read in books or on the computer….

“Wow… I didn’t think that really happened.”

It’s Life, Sean.  And Life also means Death.  You can read about it in books but you’re going to have to experience it one day for real.

So my son finally stepped away from the computer, stepped out of his world, and joined ours for just awhile.

It’s sad that it had to be for such a moment.

But it needed to be done.

Just like getting off of my butt, unscrambling my brain, and writing this blog.

Sometimes you have to listen to your kid’s unfiltered wisdom.

But let’s keep the fact that he was truly right this time our little secret.

Sean already thinks he knows it all.  There would be no living with him if he ever got the idea that sometimes, he actually does!