Oh Hell, You Title It!

4:30...quarter to 5 is fast approaching.

And some big haired, 80’s era, pseudo-heavy metal band just sang, “It’s the final countdown” in my head.

Crap.

Yep, the final countdown…

High school orientation is just minutes away.

When did all that growing up happen?

How the heck did we get here?

Crap.

The final countdown…

This year is unlike any other year.  It is so full of unknowns.  It’s so scary.  It’s not something I ever dreamed of.  Ok, that’s a lie.  Maybe I did a bit but that was so long ago.

And now it’s here.

Crap.

I should be happy.  I should be ecstatic.  I should be absolutely thrilled beyond my wildest dreams that my son is going to high school and being mainstreamed.

But I’m not…

Because it was beyond my wildest dreams.  It really was.

I think back to that conference room and that huge wooden, super expensive table my husband and I sat at seven years ago.

The doctors gave us the diagnosis – something that we expected – and thought, “Ok, where do we go from here?”

Sean was diagnosed on a Friday and by Tuesday we were already at a support group meeting.

But I never expected.  Sure, the thought would go through my head every now and then but it was always through a fog of “what ifs” and “I wonder if he could…”

But never mainstream….never full-time.

Even after he was fully mainstreamed last year for 8^th grade I didn’t dare think about this day.

Too many obstacles to overcome…too many things to go wrong.

Too much pressure on Sean.

But you know what?

He overcame them all.  The obstacles, the missteps, the bullying, the pressure… he beat and excelled past all of them.

Not that I doubted.  No, I never did.

But it’s different…not doubting versus daring to dream.

And now it’s here… high school orientation night.

The first part of the night we will be with the other special education parents.  Even though he is mainstreamed Sean will still have an IEP and resource time.  It will be during that time that I will feel most comfortable.  I know the routine.

Then Sean will head off with the other freshmen…for a tour and whatever else incoming freshmen do.

And I will sit in another room… supposedly listening to some administrator talk about the importance of academics and getting involved… blah, blah, blah…and my mind will be elsewhere.

“What is he doing?  Is he OK?  Is he listening?  What’s going through his mind?”

A million thoughts will surge through my brain and the stress will tighten my already tightened jaw.

Oh crap, oh crap, oh crap.

I thought waking up the other day with that damn song going through my head was bad enough.  But now it’s here…

The final countdown…

And big haired or not, it’s almost 4:30.

And I’m a wreck.

Two Boys and a Boat

Sean went on a playdate yesterday.

Yep.  You read that right.

A playdate.

Holy freakin’ cow…

It was with a boy whom he had met at Boy Scout camp.  Looking back, it should have never happened but it did.  Funny how the world goes right sometimes, huh?

Sean was working on his Small Boat Sailing merit badge.  His class was the first one of the day…meeting around 8:45.

Sean was also working on his Communications badge, which happened to be his last class of the day.

You would never think that the two would interfere with each other but they did.

And that misstep may have changed Sean’s life…or at least, a few days of it.

Even though Sean was sick, Boy Scout camp proceeded quite normally for the first couple of days.  He went to his classes, did his homework and went about his routine.

Then we learned that in order to complete the Communications badge Sean had to attend a meeting hosted by the camp directors.

That meeting would be held first thing in the morning.

Crap.

What to do?  What to do?

You would think it’s a relatively easy question to answer but then again, you’re out in the woods…not sleeping well… and everything is NOT normal…or easy!

I decided to speak with the sailing instructor to see about switching to the later class one day so Sean could attend the meeting.

The switch was made for Wednesday.  Sean attended his meeting and then went to the 10:30 sailing class…

Where he met his buddy.

Instant bonding.  Two peas in a pod.  Alike but yet so different.

Sean had made a friend.

I wasn’t planning on keeping the later class time but when the boy said, “Will you be here tomorrow, Sean?” I could hardly have him say “No” when he glanced over to me for the answer.

The schedule, the perfectly controlled environment of “Mama Control Freak” was messed up and I couldn’t care less.

Sean had made a friend.

The following day – Thursday – they spent in boating class and then made plans to meet during open boating hours and take a boat out to sail.

You can imagine the fear coursing through my body with the idea of my son and another little boy out on a boat in the middle of the lake but I let him go.

And off they went…and had a blast.

Friday afternoon Rich and the girls came up to experience camp for themselves.  Again, the boys were back at the beach, readying their boat for another afternoon of sailing.

To see them out there… to know that Sean was doing something so “normal”…hanging out with another boy…

The moment was priceless.

We exchanged emails and phone numbers and this time a friendship did not end with the closing bonfire of summer camp.

The two emailed and phoned.

And then it happened… Sean got invited over to the boy’s house.

Not only was if for a playdate but it was the boy’s birthday.  The family wanted to know if Sean could accompany them for a dinner celebration.

Wow.

That’s all I could think…

Wow.

And again, off they went.

With Sean and his autism, so much of his world has to be controlled.  Every moment, every bite of food, every situation played out beforehand so you can anticipate the challenges that your child will face.

It’s astonishingly easy to become a control freak…Captain of nothing else in the world but your own little dinghy.

But then Life throws you a lifejacket … changes course… and the wind decides to blow in a completely different direction.

And you know what?

Aside from being scary and new and unchartered, it turned out just fine.

Imagine that.

Take Two and Call Me in the Morning

“I like boobs.  I like boobs.  I like boobs.”

Not exactly what you expect to hear coming from your 14-year-old son’s mouth in the pediatrician’s office but then again, with Sean the unexpected is the only thing you can expect.

Sean had to get another shot today.  Yep, more torture for the privilege of attending the 9^th grade.

Poor kid.  You know how he is about shots.

I struggled with how to tell him he was going to have to get another one.  I knew about it roughly three weeks ago when the high school rejected his physical.

I was so angry.  I couldn’t believe it when the school nurse said he needed a booster shot because… get this… a vaccination Sean received in 1999 was given – supposedly – a couple of days too early.

Are they serious??

I was fuming riding my bicycle home that day from the high school.  So much for a relaxing ride on a gorgeous summer day…

So I’ve known for weeks and couldn’t imagine telling him about the extra injection.  He had been so relieved after the last set was done.

And now there was one more.

Sometimes being a mom sucks.

I passed off the additional doctor’s appointment as yet another check up for a recurring pain he’s been having. 

I wasn’t lying… I was sure to talk to the doctor about it.

But I felt awful for not being entirely truthful.  Every time he brought up the appointment I felt as if I was deceiving my child.

And I was.

I came clean about a mile into the drive to the doctor’s office.  It was in the car but we were at a red light.  He still could have jumped out and made a run for it.

Surprisingly, he took it fairly well.  I allowed some foul-mouthed remarks about the district’s stupid rules and regulations and dropped the subject as quickly as I could.

Do you talk about it or ignore it?  Touchy situation….

I guess in the length of a red light, we did both.

We got to the doctor’s office and I was grateful for the levity that talking about last week’s explosive diarrhea incident in the woods and the irony of the doctor’s bathrooms being unusable provided.

Soon enough, the doctor was in.

Sean and I had practiced our “hold” (where I – for the lack of a better word – trap his arms under mine while he’s facing me)… adding in talk about smelly armpits and failed deodorant to the mix…before the doctor arrived.

We went over how he would count down from three and then scream…preferably like a girl.  The doctor would give him the shot during the scream.  It’s a long-standing joke in our house as Sean’s voice has been changing.  When he screams it will often times “crack” and take on the high pitch of his sisters’ vocal endeavors.

So the scene was set for the big shot.  Sean was standing in front of me.  The cap was off of the syringe.

Everyone was ready.

That’s when “routine” and “practice” flew out the door.

As soon as the alcohol swab hit my son’s upper left arm he started semi-shouting “I like boobs. I like boobs.  I like boobs.”

It was hilarious.  I couldn’t believe the words coming from my son’s mouth.

With the swiftness of a super hero, the doctor shot him in the arm.

Sean paused.  Not knowing what to think.

Then she reached for something…  Sean, suspecting it was another needle, instantly began his mantra again.

“I like boobs.  I like boobs.  I like boobs.”

I couldn’t suppress my laugh as the thing she reached for turned out to be a band-aid but yet the boob talk continued.

“I like boobs.  I like boobs.  I like boobs,” Sean kept saying as the band-aid was placed on his arm.

“Oh, it’s over?”

“Yes.  That was a band-aid.”

“It didn’t even hurt.”

I quieted the urge to say, “Yea, putting on a band-aid rarely does.”

Instead I went with something mom-like and told my son how proud I was of him.

Three weeks of torment with visions of him screaming and crying in the doctor’s office swirling in my head.  Three weeks of wondering how I was going to hide the tears that would inevitably well up as he anticipated the injection.

So much for all of that…

Who knew that the word “boob” would be all that it took?

Although he did admit that he’s never seen one… but he’s sure he likes them!

My kid never ceases to amaze me….

One Word, Two Worlds

My son is high functioning.  Therefore, I walk a fine line every day…sometimes tipping towards the “typical” world, sometimes towards the “special needs” world.

Which do I prefer?

Special needs.

Absolutely.

Why?

Because they…the people that live with, care for and teach these amazing children and adults…understand.

They understand…

They…understand.

Do you know how comforting it is to be surrounded by people who understand?

All of you know exactly what I’m talking about.

You relax.  You breathe.  You allow yourself a moment.

Even if it is just a moment…

It is those moments that I was so desperately searching for this past week while I was away at Boy Scout camp with Sean.

Sometimes I found them…most often in the young counselors.  I would introduce Sean and tell them he was autistic.  Then, as if some silent prayer had been answered, they would say, “Cool.  I just volunteered at a special needs camp last week.”

Take a breath.  Breathe…

They got it.  They understood.

Sean would be safe in their hands and I could have my moment.

Later on I’d return to our campsite with Sean and march off to the dining hall with all the other scouts.

Back to the “typical” world… the scary world…the world of so many unknowns…

When Sean would become overwhelmed by the dozens of scouts around him, all chattering away, controlled chaos reigning around him…

Would they understand how he had to hold tight to me to calm him?

When he would sit there after meal time and wouldn’t move when he was told to clean up because no one had broken down the instructions to their basics…put the plates in the rack, get a bucket, wipe the table…

Would they not think he was lazy and trying to get out of work?

And when he needed to use the bathroom because he was either nervous and seeking a quiet refuge or clearly had a biological need to go…

Would they let him?

The answer is…

 No.

They won’t understand.  They won’t get it.  They won’t let him go.

And when raised voices have quieted…

When tears have dried…

There is no need to feel sorry for me because I do not understand.

I understand so much more than you…

I understand that children do not have to be placed solely in either the special needs world or the typical world.

I understand that my child, like most special needs children, has one of the purest souls and he has the ability… the capability… of being in either world.

And when you encounter him in the “typical” world you should listen and learn…open your heart…

Be grateful that he came for a visit…

And at least try to understand.

That is, after all, all anyone can ask for.

And that is exactly what my child truly deserves.

Understanding.

A Camping We Will Go...Again

It’s that time of year again…. time for Boy Scout camp.

Ugh.

Let’s start by quoting Sean…

“Mom, are you excited?”

Oh, oh!  I know this one (as I picture myself wildly squirming in my desk seat, hand up in the air, desperate to be called upon).

The answer would be….

NO!

And yes, that’s my final answer!

Was it the messy house, the hot weather of this summer or a million other things that kept me from reaching epic excitement mode?  Or is it simply that this year was definitely not the year I was looking forward to camp?

Then again, sleeping in a tent for a week, eating camp food and getting eaten alive by unknown beasts of air and land is hardly on my bucket list or even something I want to write about in my “What I Did Over Summer” report.

No… nada… blyuck.

But I love my kid and you all know I’d do anything for him.  Thus, it is back to camp I go.

Unlike last year when Sean rode the bus with the rest of the troop and I followed in my car immersed in Barry Manilow heaven, we decided that it was best for Sean to stay back and ride with me.

He wasn’t thrilled with the idea until I explained to him exactly the comforts (or lack there of) of riding in a 15-passenger van with… well… 14 other people.

No dvd player.  No room to spread out.  No control over the radio station.

Besides, they were leaving an hour earlier. 

“Don’t you want to sleep in a bit?”

SOLD!

It really had little to do with my being a helicopter mom.  Am I one?  Proudly!  But this time it was different.  Sean has been having major anxiety issues.  Whether it is due to high school or the mere thought of high school or whether or not the sun will come up tomorrow (bet your bottom dollar that it will!), the kid is one chest-tightened, heart- fluttering ball of anxiousness.

The last thing he needed was 4 hours in a crowded van with noise and uncertain bathroom and food breaks.

And let’s not forget, one less hour of sleep!

So off to camp we went….

The Sweetest Thing

Home, sweet home….

Or, as I see it… Laundry…loads and loads of laundry.

It is the morning after coming home from our first family vacation in over 8 years.  Most people are shocked that we have not left town in so long.  However, parents of special needs kids are not.

They know what it takes.

They know what it’s like.

And they are more shocked that it’s been only 8 years since we’ve last ventured out.

Sean couldn’t wait to get home.  I think the pressures of being out of his world were weighing on him and he just had to get back to his computer, his room…his life.

He’s awake now.  With water bottle in hand and the computer on, he’s in his element.

Shortly, he will ask what we have to do today.

Our agenda is light with only helping out at a car wash for the Boy Scouts on it.  I would skip it but camp is in a week and we need funds to pay for the bus that will transport our troop away from air conditioning and cushioned seats to a land of layer upon layer of bug spray and all around discomfort.

Just the thought of packing again and heading out exhausts my ability to cope.  I can only imagine how Sean is going to deal with it.

He did really well though on vacation.  We tried to keep it easygoing and not run around too much.  We brought food from home and I made sure to have some melatonin on hand to help him sleep.

There were times when he would be too quiet and I would look at him and see that he was somewhere deep in his head.  I worried about him most during those moments.  Is he enjoying himself?  Is he stressed?

I would ask him and he would reply that he was merely thinking.

Oh how I wish I knew about what!

I knew he was worried about our new dog Lola.  She was being boarded for the first time and we were all concerned on how she was going to handle it.  The doggie hotel had webcams so we were able to see her while we were gone.

She seemed to be doing fine but still he worried.

He worries a lot… which in turn, worries me.

It’s as if the worrying has aged him or something.  He’s a 14-year-old kid with an 80-year-old soul.  He’s always asking me, “Are you ok?”  Or, “Are you happy?”

Shouldn’t he be more worried about what the next thing that he grabs from the pantry will be?

Oh, that’s right.  He worries about that as well.

At home I always try to ease his fears by laying things out for him.  Every night I tell him what’s going on the following day.  Every morning I tell him again.  Then throughout the day it’s more of me telling him what’s next.

That’s why vacations are so difficult.  You can only plan so much.  You can only anticipate so many obstacles.

In other words, who knew Denny’s would be so crowded at 10:30 in the morning or that Ashley would be the one having the meltdown or that, in the midst of a drought of epic and historical proportions, it would rain??

Seriously…it rained!

Walking in the door last night was not only a relief for him but it was for me as well.  Home is where I know the things that stress him.  Home is where I can help him the most.  Home is his refuge, his safe place.  But most importantly, home is where Sean is free to be himself.

And that alone makes Home the sweetest place to be.

Eye Wear Short Shorts

Today was a day that Sean has been looking forward to for a couple of months.

“Mom, are you excited?”

“For what?”

“My eye doctor appointment.”

“Oh, yea… that.”

Honestly, no.  I was not excited.  I was scared.  I was worried.  I really didn’t know what to think or feel beyond the fact that my son was having eye pain and blurry vision and I had no idea how to fix it.

I’m a mom.  I should know.

But I didn’t.  Thus, several weeks ago I phoned my trusted eye doctor and made an appointment.  It wasn’t an emergency – yet – so we got what we got and therefore had weeks and weeks ahead of us to think, to imagine, and to worry what this appointment would bring.

Finally, today was the day.

Sean barely had time to get off the bus, come home and pee before we packed a snack bag and left for the medical center.

I prepped him again in the car as I have done so many times before.

“Sean, you’re going to get eye drops.”

“I know.”

But did he really?

Did he remember the horror he went through as a young child when he came down with pink eye?

Did he remember how both my husband and I had to hold him down to put the drops in every day?

Did he remember the terror that he felt with every drop of liquid?

Did he?

I know I did.

And now Sean is way too big for me to hold down – even if my husband was there.

What would I do in the doctor’s office if he freaked out?  What would I do if he lashed out – threw his hand up – and accidentally hit a staff member?

What would I do?

“Sean, you’re getting drops.”

“I know.”

The moment of truth was swift.  After a short warm-up with the eye chart the technician whipped out the magic bottle… the stuff I feared so much…in order to dilate my son’s pupils.

He seemed calm.

And then he wasn’t.

I had him hold my hands – wishing for him to break them rather than have his arm swipe an unsuspecting employee.

Sean was breathing heavy, his lips frantically going back and forth over his braces. 

I had to try and keep him calm.  I would worry about him ripping his lips apart later.

He closed his eyes and you could tell that ever fiber in his body felt panic and fear.

My eyes started to tear and my heart broke as I helplessly watched what my son was going through.

I tried talking to him.

“Sean, look at me.  You’re ok.”

“Sean, close your eyes.  Hold my hand.  I’m here.”

And then finally, desperately, I remembered something he had said.

At summer school he had met a girl.

He didn’t know what she looked like or any detail of her person.

Except for one.

She wore short shorts to school.

“Sean, think about that girl today.  Think about the short shorts.”

He smiled.

“Sean, tell me again what she was wearing.”

“Yea, short shorts.”

He laughed.

The drops were in and now only the stinging was left to get through.

I wrapped his arms around me to keep him from wiping his eyes and held his head to my chest as he cried, “My eyes!  My eyes!”

If only I could take every painful second from him.  If only I could hold him tight like that and protect him from all his terrors.

But I can’t.  I can only be there.

We had one more hurdle to cross when the doctor’s light was too bright for him.

“Sean, remember the short shorts.”

Even the doctor had to stop what she was doing so she could laugh.

We all did.

And then it was over.

My son, the boy who can’t look at anyone, stares too much and doesn’t blink enough.  It was as simple as that.

No glasses.  No mom-imagined brain tumor.  No emergency.

Blink breaks, an anti-glare screen for the computer and no tears shampoo to wash his gorgeous eyelashes… a prescription that anybody could handle.

A call to Pizza Hut for a celebratory dinner and the details of the day’s ordeal were practically forgotten.

Hopefully, that also included the co-ed in the short shorts!