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.

Ovaltine vs. A College Education

Good morning everyone.  You would think my first blog in almost a week would be about the first days of school.

Yea… you would think so.

And I really want to write about them but, to go totally psycho-babble on you, I haven’t quite figured out how I feel about them.  In other words, I haven’t processed them yet.

I think they went well.  No phone calls from school.  No notes home.  I got a simple email about Sean having a water bottle in class….

Nothing earth shattering.

I’m sure to find out more on how everything went when I see staff tomorrow morning.  It’s time for our domain meeting and to update our histories with the social worker.

Oh how I dread airing my dirty laundry and feeling like I’m one wrong answer away from losing the kids to child services.

Isn’t that ironic?  I can tell my innermost thoughts, feelings and fears to a semi-world-wide audience, and yet, sitting down with a social worker scares the wits out of me….

Either way, it must be done.  And, of course, I will share as much as I can about the experience with you.

Now onto the topic of the day…

I just refilled Sean’s water bottle and milk jug and put them in the refrigerator.  Sean drinks milk or water.  He doesn’t juice and only has a rare soda with pizza.

How I wish I could have his habits!

Trying to be eco-friendly, we wash our plastic bottles and then re-fill them.  Sean can go through three or four of them a day. 

As we stood at the sink washing up to twenty-five or more bottles a week, we began to wonder how eco-friendly we really were being.  Besides, this particular chore was becoming one that we procrastinated endlessly upon.  Was it worse washing them every day or watching them pile up beside the sink until one of us finally gave in?

After Sean and I returned from our weeklong camping trip, an idea finally struck.  Sean now uses the large water bottles from our camping gear.  We have a pitcher of water in the refrigerator and, in theory he should re-fill the bottle as needed.

Of course, Sean being Sean, he just puts the empty bottle back in the refrigerator in the hopes that some magical fairy will one day fill it up.

Mom, maid and now, magical fairy… a little girl’s dream come true!

Sean’s other drink of choice is chocolate milk.  I know, I know…. It’s not good for you… extra calories…  I know the drill.

I’m a milkman’s daughter so I grew up on milk and nothing was better than a carton of fresh chocolate milk from the dairy.

Yummy!

Along with the fruits and vegetables that I should have raised Sean on, I should have also left the chocolate milk out, but I couldn’t.

If I was having some, then he wanted some as well.

How could I deprive my baby?

And thus, it began.  But I wanted to go a healthier route than Quik.  My girlfriend was adding vanilla Ovaltine to her daughter’s milk.  I had never tried Ovaltine but thought it worth a try.

Sean took to it and a habit was born.

Now the habit is costing us out of house and home and yes, a college education for Sean.

He’s old enough to mix his own but his two scoops have turned into almost an inch of the stuff in the bottom of the cup.

Whenever I catch him exceeding the scoop limit, I always remind him and he always replies – accompanied with a guilt-inducing sigh,  “Fine…”

You would think I had crushed his spirit by restricting his computer time.

After emptying out yet another container in a matter of days, the magical – now diabolical – fairy struck once again.

I’ve decided to make his chocolate milk ahead of time.  Therefore, I can keep him to a mere three cups a day and… this is the best part…. I mix the Ovaltine 50-50 with the Quik that I can buy in bulk at Sam’s Club.

Has he noticed?  Has he said anything?

Not yet…

Oh crap.  I exited the room for a minute just now and left my blog entry up on the screen.

The little bugger read it.

I’ve been caught.

Dang…

Now I don’t know what I’m going to do.

I guess I’ll have to decide…college education or continuing my kid’s Ovaltine habit?

Or I can always get a second (or third) job.

Is anyone out there looking for a somewhat diabolical magical fairy?

No need to pay me, just give me Ovaltine.

A Meltdown Washed Away

The first day of school and the kids are off and I am surprised that 35 minutes have elapsed and I am only now first looking at the clock.

Who knew that an issue with a logo could distract me so easily this morning?

Maybe it was merely wishful thinking…

Of course, Ashley is still sleeping.  I could always go back to bed…

But now I am fully aware, wondering and worrying…  Where are they now?  What is Sean doing?  Should I have given him some quarters for his pockets?

What did I miss?

What did I not plan for?

What is that phone call – and you know there’s always a phone call coming – what is that phone call going to be about?

It’s awful, really.  The pressure is overwhelming.

It is so much so, in fact, that I had a meltdown yesterday.

I could, of course, keep it to myself and continue pretending that I’m this even-keeled super mom.

But I’m not.  And I pride myself on being real and honest in this blog.

Thus, my friends, I had a meltdown.  And a grand one it was indeed.

I screamed.  I swore.  I stomped my feet. 

I cried.

I just couldn’t do it anymore.

I didn’t want to do it anymore.

And it was all due to hand washing… stupid, friggin’ hand washing.

In my head, I know he can survive without liquid soap.  I know I have to choose my battles.

I know that some day, some how, things will either click and he’ll use liquid soap or else we’ll come up with a real-world, workable solution.

Carrying a box around with a bar of soap is not an option.  He’s not in the same classroom all day anymore.  And if you saw the mess in the box that he came home with at the end of the last school term, you’d know that something else must be done.

I can’t get him to use liquid soap. 

But he uses shampoo.

He uses liquid body soap.

What’s the big deal?

Why is it so hard? 

Why?

Just do it…

I tried going the job route and telling him about all the rules of washing your hands before going back to work.

I tried the illness route.  He won’t get himself sick but he’ll get others sick.

I even tried the microscopic fecal matter and now you’ve just put your fingers in your mouth to play with your braces route…

Ewww….

Nothing works.

And because Sean can go to the computer and find out that only 82% of people wash their hands, he can completely justify his behaviour.

And I worry, amongst a million other things to worry about now that he is in a mainstream setting, that he will be made fun of once the kids begin to notice.

Sean claims the liquid soap doesn’t bother him.  He simply doesn’t want to wash his hands.

And I simply don’t want to deal with it anymore.

And, and, and… a thousand more and’s…

So where do I go from here?

I don’t know.

Back in June, I did a speech for an Autism Speaks fundraiser.  I talked about the day that Sean was diagnosed.

Unlike preparing for birth and reading all of the baby books so you can know what to do (and seriously, you really don’t but at least you can pretend)… When Sean was diagnosed, I walked out that door and said to myself – or was it out loud – what do I do now?

What do I do now?

I asked that of the crowd that night.

And then I answered.

I told them that you do the one thing that is guaranteed to work.

You love them.

You… love… them.

And then you go on.

So my friends, with my meltdown behind me, I will begin anew.

I will do the only thing I can do today.

I will love my kids.

I will love my Sean.

And go on from there.

Lockers and Books and Girls, Oh My!

I sit here this morning at the kitchen table looking at the clock and drinking a Pepsi.  Yea, I know… I was supposed to give it up.

Carissa is at junior high orientation today.  It’s something that Sean never got to experience.  He’ll be headed full-time into junior high without navigating the proper rights of passage that include a day of team building and tips from the eighth graders.

No, in fact, he’ll be the eighth grader and that’s probably the scariest part of it all.

Carissa will struggle to figure out a nine period class schedule.  She will struggle with finding every room and being on time.  She will forget her gym locker combination and will, at some point, not have the right book from her locker for her class.

Carissa will do all of this but she will also be one of almost 300 kids the same age, the same grade, managing and fumbling along in the same way.

Sean will do all of this and he will be just one in a class of many.

Sure, there will be other “new” students that have come to the school for eighth grade, but how many will be like Sean?

How many will have Sean’s lack of experience with changing classrooms, going to lockers, and eating lunch in a cafeteria?

How many?

Sean is excited to start school this year… a first for this home-loving, computer-infatuated boy.

He’s not thinking of all the tasks that lay in front of him.

He’s not thinking about how he’ll handle peer pressure, bullying or stress.

No….

Sean is only thinking about girls.

Yes, puberty has set in and taken up residence.

I guess I should be thankful that he is oblivious to everything else.  Why have both of us freaking out about the upcoming year?

Parents are invited to the last part of orientation today.  Carissa is supposed to show me around the school and walk her schedule with me.

It’s her time….

Unfortunately, she’ll have to share it with Sean.  I’ll try to give Carissa her moments today as best as I can.  But afterwards, we’ll begin the long process of acclimating Sean to his new school.  We’ll walk him through his schedule and try to establish some kind of routine.

Classes don’t begin until Wednesday but, come Monday, we’ll be there every day.  We will be meeting with teachers and staff.  We’ll be walking those hallways with watch in hand, timing everything so Sean doesn’t feel like he has to “fast walk” from class to class and get nabbed for running in the halls.

We will also work on his locker combinations.  How is he going to remember the one for the hallway versus the one for his gym clothes?

Will he get frustrated having to change for gym?  Will he put his shirt on forwards or, like this morning, backwards?

How will he remember to change out his books from his morning classes to his afternoon ones?

And where will he keep his I.D.?  Hopefully, it won’t be like last year when he chose to put it in his shoe…

So many questions… So many things to think about and try to pre-plan and pre-teach.

It’s funny how I don’t worry about Carissa that way.  She will learn along the way with all of the other 6^th graders.  They are the new kids on the block and getting lost or flustered is expected.

I have every confidence in her.

You would expect me to say that I don’t have the same in Sean, but I do.  He’s come so far and his team have been extremely diligent about setting him up to succeed.  They have not mainstreamed him with little thought or guidance.

They know he will succeed.

And I do, too.

But I do worry. 

Maybe it’s more so with him because he is my first born…

Maybe it’s because I’m already pre-worrying about next year and high school…

Or, maybe it’s just because I’m a mom.

And worrying is what moms are required to do.

It’s also what I do best.

Therefore, I will send my kids off next week, pat myself on the back for a job well done…

And then sit down with Pepsi in hand and worry….

Bugs n Braces

Yea, I know those two don’t actually go together… or at least not in the normal world but, as you all know by now, I am far from normal (and loving it!).

Seriously, though, the two have been topics that I have discussed with others lately.

So here goes….

Bugs…. I can’t stand them but since I’m the mom, I have to step in (pun intended) and send the little critters off to their next lives. 

Sean used to have an intense fear of bugs.  In fact, one summer he saw some creature outside and never stepped foot in the backyard again until the following summer!  I couldn’t believe it.  He was fairly young at the time – maybe 5 or 6 years old.  His resolve was rock solid.

The worst part of it all was that I never knew what freaked him out that year.  Was it a spider?  Was it an ant?  I didn’t know so I had no starting point from which to try and help him get over his fear.

Of course I tried bribery – as any good, self-respecting mother would.  I also tried to reason with him.  Yep, reason with a 5 year old… you know how well that goes!

I mourned the loss of an entire summer due to a phase that Sean was going through.  And I worried that it would never end…

How would I manage a child who refuses to go outside when I have two other children who need their daily vitamin D? 

What would I do?

Luckily, either the passage of time or the winter snow eventually eased Sean to the outdoors.

Ironically, now at 13 years old, he’s the “bug whisperer” and can’t keep away from them.

“No, Sean.  Please don’t catch the wasp in a paper towel.”

“Please don’t smush the fly with your bare hand.”

“Put the firefly down!”

Sean has also come up with a coping mechanism for when that fear creeps back into his brain.  He’ll get the hose out and douse everything in sight.  It doesn’t matter if it’s inside the screenhouse or in the backyard… everything gets soaked.

Hey, at least he’s outside once again.

Now if only I could get the children to actually play out there….

I swear electronics have sucked the “childhood” out of children.

Now onto braces…

Sean is doing pretty well with them.  The first few days were horrendous but eventually he figured out that he could still eat his crunchy granola bars if he put them in a bag and smashed them to smithereens.

But today’s comments are more geared towards the “pre-braces” Sean got back in January.  They were actually called “spacers” and he had either six or eight of them in at any given time.

The tiny pieces of metal were placed in between his teeth and were supposed to help push his teeth far enough apart in order to place a “cap” over his teeth.  This cap was attached to yet another piece of metal that would push all of his teeth around.

I know that all sounds dull… and a little painful… but I getting to some kind of point.

So these spacers are placed in there and, if you leave them alone, they do their job.

For a kid who is extremely texture sensitive when it comes to things in his mouth… well, let’s just say he didn’t leave them alone.

Thankfully, he did no damage as he pulled them out again and again, week after week.

It did drag out the procedure for spacing his teeth apart though, as some would last only hours before Sean claimed that they had fallen out.

Surely, it was frustrating for me.  I can only fathom what the poor orthodontist was thinking each appointment.

Oh, Sean….

Finally, after a few months, enough space was available and the caps with the retainer attached were firmly stuck onto his teeth.

It looked so painful as the orthodontist pushed (and pushed) those caps on.  I felt bad for Sean but, in a way, was it a lessoned learned?  The caps would have gone on easier had the spacers been left alone.  Did Sean get that?  I’m not sure…

Now, as we end Week 1 of braces on his bottom teeth, Sean has stopped smacking and licking his lips so much.  He keeps a Chapstic nearby. 

I can’t say for sure that he’s NOT playing with them, but so far things seem to be OK.

As for food, we are still in the soft food phase but progressing.  I have extra mac and cheese on hand and spaghetti has once again made its way onto this week’s menu.

Time will tell…

But I do know one thing for sure…

If it’s not one thing, it’s another.

And that, my friends, will never change.

Brace Yourself, SpongeBob!

Ice cream for breakfast and mac and cheese for a mid-morning snack… such is my life with a teen-ager in braces.

Amongst all the chaos with Smokey, life still soldiers on and with that comes the appointment that Sean has dreaded since January.  Yesterday, he got his bottom braces put on.

Ouch.

For this texture sensitive kid, however, the initial hours weren’t so bad.  He played with them a bit.  He moved and smacked his lips a lot.  But they didn’t hurt him… yet.

Last night he asked for some pain meds.  Fine.

This morning I woke to tears and screaming as he tried to eat a chewy granola bar.

Uh oh.

All I could think of was, “Please don’t rip them off.  Please don’t rip them off” as I envisioned my $5000 investment (after insurance!) scattered around the bathroom sink.

I tried to calm him down.  And then tried to calm down Carissa as she came stomping down the hall and yelling that her brother was being too loud.

Seriously?  Can I just ignore all this and go back to bed?

I hugged Sean tight as I attempted to explain that the pain would eventually subside but for now ice cream and soft stuff was the way to go.

It was a tough sell.  Sean loves hard, crunchy food.  He lives for it.  He never liked mushy food as a baby and he still doesn’t.

The ensuing two years are going to be difficult.

But let’s concentrate on getting through this next meal, this next moment.

Ice cream, anyone?

I even offered to put it in the microwave for a few seconds to soften it up.

Yep, I’ve officially reached “crazy mom” status…

Whether it’s cut on the knee, a bad grade or new braces, a simple bowl of chocolate ice cream goes a long way to ease the tears and soothe the soul.

Sean stopped crying and ate his “breakfast” of ice cream and pain meds.  After awhile, he even went back to playing computer.

I internally cheered as the crisis abated.

And then he asked for a snack.

You could almost hear the bell go off from the side of a boxing ring.  Round 2.  But I was prepared.  I had shopped according to my own four and a half year experience with braces.

Pudding and jello were out.  Mac and cheese were in and his mushy food of choice this time around.

The SpongeBob-shaped noodles (and only SpongeBob-shaped noodles!) were dumped into the water and the minutes ticked by as my pantry-pilfering teenage son now withered away from starvation.

Finally, it was ready.

But the bowl that he always gets it served in was sitting dirty in the sink.

I could be a good mom and wash it and keep life going as normally as possible.  It would certainly make my life easier.  But, it’s been a tough day or so.  I’m tired.  Dishes can wait.

I decide to throw Sean a soft curve and serve the orange mash on a plate.

Wow… yea, I know… I am one crazy kid!

Sean objected once and then dove right in.  I guess if you’re hungry enough, you’ll eat off of just about anything… even a good dinner plate!

He’s outside right now.  No doubt, working up an appetite.

Sean’s going to come in hungry and I have no idea what I’ll serve up next.  Braces are one thing, but autism and its accompanying sensitivities are another.

I do have two years to figure it though….

For now, maybe I’ll go back to bed and think about it.

My Son

It’s 5am and I am awake due to a nightmare.  It was about Sean getting lost in the woods while searching for another Boy Scout.  The words “If we find him” scared me out of my nighttime hell….

In my dream I kept asking, “What would a Boy Scout do?”  Sean and I have had many conversations regarding what to do if he ever gets lost.  None of his answers ever coincided with what a Boy Scout would do.

That scares me….

Boy Scouts and fear of not having all my kids safe and sound under my roof are forefront in my mind as I write this.  We are not only newly home from Boy Scout camp, but Life has thrown us some curves where Sean has acted in many ways like the scout that he is becoming.

Elk Grove, the town where I live, has an international bike race every year.  I look forward to it almost as much as Christmas.  The streets are prepared, bikers from all over the world travel the race route in anticipation, the jumbotrons go up… and it all happens at the end of my street.

Even with all the barriers and volunteers to control traffic and pedestrians, unfortunate incidents still occur.

The entire family was standing on a corner, safely tucked behind a barrier, watching the final lap of a race.  A boy on his bicycle materialized from somewhere.

At the same time that the race volunteer raised her flag and said “Wait,” the boy took off to cross the road.

Neither saw each other and the racer collided with the boy right in front of us.

Fortunately, both were OK.

Sean later mentioned that he was glad he didn’t have to put his Boy Scout first aid training into action.

But tonight he did…

Smokey had another episode.  She was outside – and call me a bad mom, but I’m not really sure how long.  5 minutes?  10 minutes?  The evening was cool – almost a perfect coming-to-an-end summer night.

I was on the phone with a friend, learning that they are moving away in a few weeks.

I wasn’t paying attention.

Then I noticed Smokey outside.  She was in her usual pose, laying on the grass surveying the yard for danger.

But she looked different.

I called out her name and hung up on my friend.  I also called out to Rich.

He came running and the family sprang into action.  We brought Smokey inside to try and cool her off and get her breathing normally again.  The fan came out and water was splashed on her.

Then Sean did a most remarkable thing.

He brought out an ice pack from the freezer.  It’s a flexible one that can be wrapped around a body part.  We placed it around Smokey’s neck hoping to cool her carotid arteries and thus cool her.

It should have worked but Smokey wasn’t responding.

We decided to try and get her to the animal hospital.  Sean called out something like “We have to mobilize” and proceeded to follow every direction we gave him to a tee.  Including turning off the lights even if I was still maneuvering in the room.

He was calm and wonderful throughout the whole ordeal.  He tried to comfort his sisters and showed no reservations when asked if he wanted to go back to the trauma room and say good night to our beloved family friend of 15 years.

Sean even tried to lighten the mood by sharing his bevy of Chuck Norris jokes.

We’re not sure what will happen with Smokey.  Surely, there will come a time….

The house is quiet and I am definitely freaking out inside not having all of my children – two and four-legged - home safe and sound.  I’m no dream interpreter but I would bet my nightmare has something to do with Smokey not being around tonight.

Whatever the future holds, though, I know one thing for sure.

I have one absolutely terrific son and his name is not Autism.

His name is Sean.

One Final Push

 Day 6 – Exhaustion is mixed with giddiness as I sit in my semi-empty tent and mentally count down the tasks that will lead me to air conditioning, cushioned seats, and most importantly, flush toilets.

What a day….

It was never easy.  From the first confrontation at breakfast that lasted well into the hike to aquatics later on that morning to the showdown at lunch, it was a battle of wills. 

I can say much of it was same old, same old because parts of it truly were.

Do we really need to rehash why the camp changed the program for Pirate Night?  Do we need to debate the reasons why the junior high does not allow students to go to their lockers in between classes again?

Seriously?  Am I living in a re-make of the movie Groundhog Day?

I don’t want to discuss these things again and certainly not at camp when there are much more pressing matters at hand.

Let’s talk about the schedule for the day…  Let’s practice your speech for the Public Speaking merit badge…. 

Let’s have a conversation about anything other than topics that we have covered ad nauseam.

Please?

I hit another breaking point today.  We were at lunch discussing the locker issue and Sean said something akin to he was right and everybody else was wrong.

Really, Sean?

I didn’t respond and Sean continued to bury himself further in the hole by saying, “See, I win because you can’t say anything in return.”

I told Sean to clean up his place and that we were going to leave.  I think he was stunned.

We walked out of the dining pavilion without saying a word to anyone else and headed towards the parking lot.

Merit badges or not, I was ready to head home and Sean knew it.

Sometime during that walk I want to believe that Sean finally understood that he had pushed too far and had crossed the line.

Did he understand why I was so angry?  I don’t think so….

But any glimmer of mutual understanding is better than nothing.

I decided to let him continue on his quest for merit badges and he did remarkably well.  At times the required badge work was tedious, at other times strenuous.  In the end, Sean accomplished the six that he had set his sights upon earlier in the week.

Could we have pushed for more?  Sure.  But camp is also about forming friendships and having fun.

For tonight’s dinner, the troop invited some of the staff to our campsite for an end-of-the-week Thank You pizza party.  I grabbed some slices and went off to the side.  Sean went through the line and made his own plate.

Then he sat down amongst the group – next to the pretty blonde girl from aquatics – and started to talk.  I can’t say he was having a truly mutual conversation but at least he was trying.

As the boys now begin to quiet down and head for their tents, I am already beginning to miss Camp Napowan.  It was hot.  It was humid.  It rained.  And I’m still recovering from the mystery bug bite.  But, when I look back at all that Sean has accomplished this week…  not only the merit badges, but getting through his own internal struggles, and then finding some kind of pathway to interact with his peers…

It’s been an incredible week and one that I won’t soon forget.

Good night from Wild Rose, Wisconsin and Napowan Adventure Base for one last time….

A Mother's Wish

Day 5 – It’s the end of what has been a very long day. 

I told Sean that I would have to push him hard until 5pm and then he’d have some free time.  All day we hiked from one part of camp to another and then back again and yet completed only three of the six merit badges he’s working on.

Disappointing?  You might think so.

I could be the Type A personality mom and throw a fit about the lack of progress today but really, who am I kidding?  It’s been a heck of week weather-wise and some of the badges have been fairly involved.  Last year Sean only completed four so if he does six, then that’s a 50% improvement (Sean figured that out…not me!).

Being the taskmaster today was not fun for me.  I hated nagging and pushing him like that.  But then again, the main objective of this week is to work on merit badges and have some fun along the way doing cool camp-type things.

Tonight Sean wanted to play capture the flag instead of going down to the Aquatics area and joining in a pirate-themed gladiator type fight in the water.

I objected because he can play capture the flag any Monday night with his troop during their weekly meetings.  How often do you get to play pirate and push people off of rafts? 

I insisted on going down to the water and at least giving it a chance.  Spectators on the dock were allowed to throw water-logged balls and sponges at the gladiators out on the lake.  At first Sean resisted but then he got into it.  He was a little frustrated about having to wait until the gladiators stood up on the rafts but I didn’t think it was cause to walk away from the game.

Until Sean slipped on the dock and almost fell in.

Being the mom, I grabbed him by the arm to prevent him from falling completely into the drink (said in my best pirate voice!).

Mind you, if he had actually fallen in it would have been no big deal.  But it was the instinct in me that made me grab for my son.

My son… my wonderful, lovely son… did not take it quite so altruistically.

He was perturbed – big time.  He threw my arm off of his and asked me why I had done that.

It was incredibly rude and disrespectful of him to do that to me – his own mom – as well as to do it in front of others.

I had hit my breaking point.  After so many days of 24/7 togetherness, I had finally had enough with the OK’s, the What’s, and the Yea’s.  I had enough of the Rub Me’s…   I was fuming and all I could muster was a pointed finger towards the sand.  I muttered “Beach, now” through clenched teeth.

While we were walking out I asked him why he felt he had to be such a jerk to me, why he had to treat me that way.

He said he didn’t know.

I know it’s only his autism doing this.  I know that part of him can’t help it.

But gosh, I wish sometimes he could.

I wish sometimes that he could answer me without sounding annoyed or like I was bothering him.

I wish sometimes that when I put my hand on him or my arm around him that he wouldn’t shove it aside.

I wish for a lot of things but I will never wish for Sean not to be autistic because it would change who he is.

I like who he is.  He’s my son and I could not love him more.

And I celebrate the fact that he’s this unique, wonderful kid.

If it’s autism that makes him like this then hey, that’s fine.

But I do not have to like all the crap that comes with it.

And that’s the stuff that I will never stop wishing away.

Home, Sweet Far Away Home

Day 4 - The patience that I so desperately asked for yesterday is wearing thin as I lay here observing a 4-legged daddy-long-legs spider traverse the screening of my tent.

Ewww…..

My leg itches and I am beginning to tire of having this over-sized welt on my thigh.  We are past the halfway point and yet home still seems so far away.

Sean is now over by the fire pit with the rest of the boys.  They are taking a refresher course of fire safety.  I’m hoping he’s listening….

Today he made good progress towards completing his merit badges.  He finished the shooting part of the shotgun badge.  He destroyed 12 out of the 15 clay pigeons whipped into the air.  Sean is quite the amazing shot!

I guided him from place to place, nagging when I needed to, and trying to be clearer with my instructions.

I’ve had to learn to slow down out here when it comes to doing things with Sean.  At home he at least has a set routine that he can fall back upon if he forgets what I’ve told him.  But here, if I tell him to brush his teeth it’s not as simple as going into the bathroom.  He has to find the toothbrush and toothpaste.  He has to fill the water bottle.  Then after he brushes he has more to clean up and put away than simply tossing his brush aside and turning off the water.

Everything here is ten steps more than it is at home.  I also have to be careful in how I phrase things.

What once was, “Change your shirt and get your shoes on,” is now “Go to my tent.  Get your shirt.  Put it on.”

Shoes can’t even come into the picture until the shirt is taken care of.

I have to make sure I have his attention before giving any kind of instruction and also speak very slowly and concisely.

It’s so much different from home where Sean and I shared a type of communication that was based on short commands and revolved around a schedule.

I miss the “brush and flush” of home….

As I have adapted my interactions with Sean, he has been less prone to show his annoyance with me.  He’s also voicing his desire to have free time instead of working on merit badges.  I’m alright with that for now as long as it doesn’t jeopardize him finishing his badge work by Friday.

I can only surmise that the nag in me will be out in full force tomorrow….

Overall, Sean is doing wonderfully.  Even if he doesn’t finish his badges due to him wanting instead to mess around with his fellow scouts…  Well, that’s not a bad thing entirely.  Think about it…

Sean is making strides towards building friendships.  He’s learning how to interact.  And, in ways, the kids are learning about him.

Just now, one of the older scouts in charge asked the boys why they paid more attention to the girl giving the fire presentation than they do to their leaders.

Sean shouted out, “Because she’s a girl.”

The kid has impeccable timing.  You have to respect that.

There is not a friendship merit badge but if there were, then I think I could honestly say that Sean was making progress on earning that one as well.

Wanted: Patience

Day 3 and it has been eventful without being eventful….

We had some rain.  We had some heat and humidity.  And we have – or rather, I have – one huge horse fly bite.

Other than that, the day has gone as smoothly as one can expect in the middle of nowhere.

Sean’s mood has been practically stellar.  Sure, he has his moments when he’s annoyed with me for starting a sentence and then stopping (I am hot and tired – I should be allowed momentarily lapses of the brain).  He also lacks patience when my instructions to him are not as clear as he needs.

There’s been so much telling him what to do that even I am getting sick and tired of hearing myself.

Time to get your shoes and socks on….

Ten minutes until we leave for class….

You have to eat something on the plate…

I feel awful every time I have to do it.  It’s not like I enjoy being an overbearing mother.  But he’s here to earn merit badges.  He needs guidance.  He needs some prodding. 

OK, let’s be real…. Sean needs some nagging.

As expected from any teenager, each instruction is met with an exasperated sigh.  It’s as if he’s saying to me, “Really mom, can you just be quiet?”

My patience takes a little ding, a nick, with every sigh.  Boy Scouts is his thing…. not mine.  I’m here to guide him from Point A to Point B and hopefully earn some merit badges along the way. 

When I got pregnant with Sean, I hardly imagined that one day I’d be sweltering in a tent with a thigh-sized insect bit on my leg or spending hour upon hour hiking with sand in my gym shoes.

This experience was never written about in any “What To Expect” books!

Sean can sigh and moan all he wants but I’ll still be here.  I’m his mom so I have to be.  I have to be his guide, his mentor, his pain in the butt.

And I have to have patience.

Lots of it…

Thus, the next time he sighs, the next time he attempts to roll his eyes, the next time he says “OK” when he really wants to tell me to go away, I’ll take a deep breath, dig deep, and remind myself.

Special needs or not, Sean is still just a kid….

Patience is what I need to give him above all else.  It will take him further than any merit badge ever will.

And then, when I get back to civilization, I’m going to call my mother and thank her.

She had more patience than I could ever wish to have.

So thanks, Mom!

I love you…

See you soon.

The World According To Jax

 Day 2 – I was about to write “Tuesday” but I think that was merely wishful thinking.

I’m stuck in my tent awaiting storms.  There will be no Wi-Fi connection from the ranger’s station tonight.  The last thing I need on this trip is to be caught in a downpour hundreds of yards of winding gravel paths away from camp with my laptop.  The sight of me running through the woods in the dark of night while trying to protect my computer would certainly merit a picture on the camp’s wall of shame.

Thus, I’ll post this on the internet tomorrow morning…. Hopefully!

Today was the start of programming for the boys who want to earn merit badges while they are here.  Sean has three on his must-do wish list:  Environmental Science, Lifesaving and Shotgun Shooting.

He’s in “class” until 3:30 pm each day.

It’s not difficult work, per se, although swimming 400 yards is a feat I would never imagine undertaking, but any task done in 95% humidity presents its own unique challenges.

Sean’s attitude has been pretty good most of the day.  I’ve worked hard to keep him hydrated and happy.  There’s really no reason to push hard in this weather and taking a few minutes out for a slushee at the trading post is worth much more than its monetary value.

I’ve been consciously keeping my distance although today he’s asked me to be around him more so I can rub him during the minutest of lulls in the action.  No place is immune.  OK, maybe the bathroom is.  But sitting at the bonfire?  A given.  Waiting for his turn to shoot at the range?  Definitely. 

I rub his back.  I massage his shoulders.  I scratch wherever needed.  I have become an all-in-one rub-o-matic.  And I come much cheaper than $19.99.

I don’t mind really, although it would be nice to have Sean sit down next to me simply because he wants to be by me.

Now onto our day….

Sean conquered the 400-yard swim in style – talking all the way – and dove to the bottom to retrieve/rescue a brick like a pro.  For shotgun, he was in the wrong slot for a left-hander and wound up only shooting one clay pigeon out of the air during class.  We went back to the range during open hours and he smashed 9 out of 10 from a different slot.  It was quite amusing to hear him comment after each hit.   I believe it was a combination of confidence and cockiness spewing forth from his lips.  Even the boys waiting their turn to shoot had to chuckle.

Sean is really doing great – achieving beyond my expectations.

There is a saying out there…  The only limits are the ones we place upon ourselves. 

 

I’ve tried to not ever let limits get in the way of Sean’s growth and potential.  My own concerns as a mom have certainly hindered.  But that’s more a “mom-thing” than anything else.  Who amongst us has not set limits on what are children can do?

I’m talking more about whatever limits – if they exist – from Sean having autism.  With a little extra explaining, with a little extra patience, I’m sure he can do just about anything.  Years ago did I feel that way?  No.  Sitting on the beach today watching every stroke of his for 400 yards, did I feel that way?  No.

But the aquatics director gave us a great bit of advice over dinner last night.  He said that if you can swim 10 yards, then you can swim 100.  If you can swim 100 yards then you can swim a mile.  It’s all in your head and you have to just conquer whatever it is that is telling you that you can’t.

Jax was right.

Sean really can do anything. 

You kept my boy safe, Jax.  Thank you for doing more than your job required when it came to guiding a boy and his mom through the rough waters.

Thank you for a job well done.

Now it’s time to do my job, take my place on the beach, and cheer him on….

Go Sean.

Go.