We Need A Bigger Boat To Hold My Worry

OK, I’m totally freaking out right now….

A million things going on in my head and in my life and on top of it all is Sean going on his first REAL field trip in six years.

First….

And it involves the city of Chicago…

And a boat.

Ugh.

I so can’t handle this.

After a couple of emails back and forth with the school I’ve secured a “buddy” for him to be with tomorrow.  I’m hoping that the kid won’t ditch him or dare him to jump into the lake.

Can you tell my imagination is on overdrive?

It’s THE CITY!!!!  And the lake…and a boat.

Holy crap!

Tonight we asked him if he knew his buddy. 

Sean said, “Yes.”

“Do you know what he looks like?”

“I know his voice.”

Oh kill me now… how am I not supposed to get in my car tomorrow and follow that bus?

“I think he has dark hair.”

Great.

Thankfully, Sean picked up his yearbook from school on Friday.  We grabbed it and looked through the Class of 2012 for any boys with Sean’s buddy’s name.

Only one… how lucky are we?!

Rich covered the names and held up the page for Sean in a pseudo-police-photo-lineup kind of thing.

Sean pointed him out.

Whew… but does that make me any less stressed about tomorrow?

Not a darn bit.

He’s going to be taking a camera and a cellphone with him on the trip.  I know he’ll leave the house with them secured in his pockets but will they come home?

Who knows?

I was at school on Friday – talking with a bunch of teachers in the front office.  Many of them are going on the trip tomorrow.  I made no excuses, was not a tad embarrassed, asking them to keep an eye on him.

They all love Sean and assured me that they would.

But I’m his mom and nobody… NOBODY… can look over my son… be overprotective and overbearing… quite like I can.

Nobody…

But I can’t follow the bus tomorrow.  I can’t meet him downtown and hold his hand and guide him from site to site on the tour.

I can’t be two feet behind him on the boat and remind him not to get too close to the railing.

I can’t…. but you know I want to.

Dang.

I have his graduation and party and his sisters and all sorts of Life stuff to think about and worry about….

And now I have to worry about this trip.

This doggone trip…

At least he’ll be back by 4pm…

Hopefully…

Crap!

A Winning Investment

Sean and I were being nostalgic today – the day after his 14^th birthday.  We were driving to music therapy as we’ve done every other Tuesday for the last 7 years.

He’s been obsessed lately about what he was like when he was little.  He wanted to know if we thought it was maturation or the therapies that helped get him to this point in his life.

I told him that I honestly thought it was both.

And then I told him how he used to scream and scream and scream some more every time we took him to therapy.

If it was occupational therapy he screamed.

Music therapy… he screamed.

It didn’t matter where he was going or what he was doing… Sean screamed.

I’d sit out in the waiting room silently dying inside wondering if I was doing the right thing for him.

Rich would take him and come home and ask, “Why?” 

At the time it seemed like we were throwing money out of our moving car.

But eventually the screaming subsided.  He still occasionally will ask when it will be over but even that has become less important these days.

Sean doesn’t see music therapy as therapy.  I think he sees it as a time when he can visit with an old friend.  Sean and Mr. Craig joke, laugh and “be guys” while I nap in the waiting room.

In between my dreams I listen to how Sean has improved in following a rhythm or striking the drum without the force of a strongman hitting a bell at the carnival.

Sean’s doing his therapy and loving it.

He’s come a long way….

Sean also asked me today what kinds of therapies we’ve had him in over the years.

Wow… let’s see….

Occupational.

Listening.

Music.

“Talk.”

Social Group.

Camps.

Fine and gross motor physical therapy.

But never speech….  The school district and the insurance were both against it.  Hopefully the “dis” and “dat” will cease once the braces are off next year.

Can I say what’s worked and what hasn’t?  No.  I always thought everything had potential.  Some worked better simply because they adapted into our lives easier than others.

As for how much we spent?  Sean was curious so I gave him an estimate for the last 8 years. 

$5,000.

Then I thought…. No…. $10,000.

No….

Let’s see…. $50 for each session of that therapy for 26 weeks, $1400 for 10 sessions of another, $20 every two weeks for that one, $40 each for 20 sessions of the other… plus $140 for headphones, another $140 for a heavy blanket…. Plus gas….

Scary that all that was simply out-of-pocket expenses…

Don’t forget all the “toys” that we bought that were really to combat his autism and physical difficulties.  Balance balls and hippity hops to gain core strength so he could sit up in a chair.  The mini-trampoline was for sensory needs.  The outdoor playset helped him with coordination.  The instruments were there so we could play with him and get him used to us making noise.

What about the fidget toys?  The countless fidget toys that would be mangled and destroyed almost daily.  Even now there’s a bin of them in his room, some in the cubby of his loftbed and in various drawers throughout the house.

They are always at the ready.

$10,000 doesn’t even come close!

Sean was somewhat shocked and stated that it was as expensive as buying a new car.

And then he asked if it was worth it.

Really?

Worth it?

I looked over at him sitting next to me in the car… so strong….actually carrying on a conversation with me… and replied…

“Yes, Sean.  It was all worth it.”

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….