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!

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.