Wanted: Patience

Someone said I had patience today.

Seriously? 

If only they knew…

I can’t stand not getting an email response within 24 hours.  I don’t like sitting in traffic.  And as far as waiting for my computer to boot?  I wonder how many times I’ve been tempted to chuck it out the window.

But this someone and I weren’t talking about traffic or the computer.  We were talking about Sean.

And yes, maybe I do have more patience with him.

Maybe.

It certainly was not something I was born with.  You can ask my mother.  She always said that when they were handing out patience…  Maybe I got impatient waiting in line for patience?

Either way, it’s a virtue I definitely lack…except when it comes to Sean.

Oh sure, I have my moments.  Take last night for instance.  Last night was not one of those nights where you look back and say, “Gosh I’m a great parent!”

No.  It was yelling and screaming and utterly failing to understand.

It was frustration.

It was as far from being patient as I could have ever been.

But we all lose it sometimes, don’t we?

My patience was molded over time…over necessity.  When your kid is having a total meltdown in the middle of the parking lot or the store or just as you were about to head out the door, you have no choice but to stop and wait.  There is little else you can do.

Rushing about…stimulating your child even more…is simply futile.

And thus, you wait.  And you speak in calm tones.  And you try one thing after another, after another.

And it can take two minutes or two hours…maybe even three.

You just never know.

Patience is not something that is gently given to you but rather shoved into your hands and added to your little bag of tricks to help you cope with your child and his or her ever-changing needs and challenges.

It’s gained at that moment when you learn that fighting against the meltdown (I hate the word “tantrum”), against the texture sensitivities, against the hand-flapping and every thing else is a fight that you can’t win.

It’s learning…

Learning that it takes years before your child may notice someone when they walk into the room.

Years before they can dress themselves…and even then you still have to remind them that the tags – if they still exist – go in the back.

Years working on washing hands, using soap, tying shoes, crossing the street, saying “Hi”…

And then there’s school work…writing, adding, reading…

What about getting on the bus or even recognizing their teachers?

It’s all so much and it all takes time…lots and lots of time.

So if my patience wears a little thin every now and then it’s because I only had so much allotted for that day and it probably got depleted by the time breakfast was over.

Yea, patience…you may think I have it…

And I think I never have enough.

Hold The Mayo, Have The Moment

All I can say is, “What a day!”

Actually, “What a week!” is more like it.

I went back to school.  College…at my age!  I’m too old to be a co-ed but I’m giving it…excuse the pun…the old college try!

Thus, the house has been neglected for the week as well as just about everything else in my life.  Today was a rare day off from my job and what better way to spend a gorgeous Saturday than with the hubby doing chores around the house.

We accomplished a lot.  It was great.  But it was also really hard work and I was exhausted before I even began.

And in the midst of all that, Sean got hungry.

After a long week of studying and a very long day of cleaning, organizing and cleaning some more, I just couldn’t muster the strength to make Sean a sandwich.

I know.

Bad mommy!

But seriously, it was a sandwich.  Two pieces of bread with two pieces of meat slapped in between them.  Smash together and eat.

No problem.

But…

It was.

My exhaustion and the tasks at hand meant that I could have easily let Sean snack his way through lunch by grazing on granola bars or pretzels or anything else his fingers found in the pantry but I really wanted him to have something of substance.

A sandwich.

“Sean, make yourself a sandwich.”

“I don’t know how.”

My first thought was that he was being an obstinate teenager.  My second thought was, “Oh crap.  He really doesn’t.”

Oh… easy way?  Hard way?  Easy way?  Hard way?  My mind argued with itself.

I could blow it off and let it go or I could be the good mom and talk him through it.

I did the right thing, dropped what I was doing, and headed to the kitchen.

“OK, get the bread out of the refrigerator.”

He opened the freezer and looked in.

“In the refrigerator.”

He peered more intensely into the freezer.

“The one on the bottom.”

“Ohhhhh....”

He retrieved the bread and I told him to take two slices out.

Then I instructed him to get the meat out of the drawer in the refrigerator.  He chose ham.

Fine.

Sean took one piece and then another, practically throwing the slices on the bread so as to get them out of his hands quicker.

I knew the feel of the meat bothered him.  Disgusted him actually.

I decided to not say anything…no need to dwell or remind him of the unpleasantness of the moment.

The sandwich, or rather the unfinished sandwich, laid there on the counter.

Sean didn’t do anything.

“Take the other piece of bread and put it on top.”

He did as he was told.

“Now pick it up and eat it.”

Sean grabbed the sandwich.  He looked stressed…distressed...in pain.   He casually held the sandwich down by his side, our new puppy Lola eagerly awaiting her chance to pounce.

“Sean, pick up your sandwich and take it to the kitchen table.”

He walked over, sat down, and took a few bites.

Then he was gone.

“Sean!”

“At the table!”

With a huge sigh, Sean returned.  You would have thought I was torturing the poor kid with the way he looked.

Geez, it’s just a sandwich.

But it’s not.  It never is.

It’s bread that depending upon the day and the brand can be a texture that makes him gag.

And it’s meat or lettuce or anything else that is too slimy, too wet, or too anything for his mind to allow him to touch it, pick it up, chew it, and swallow it.

Let's not even go there with mustard and mayo!

It’s everything.

And today, in the midst of chores and clutter and Life, when I longed to say, “Gosh, I’m tired and in the middle of something, can’t you just make it yourself?” you all know I couldn’t.

It was more than just a sandwich.  It was a teaching moment.  It was a physically uncomfortable challenge my child had to get through.

It was the look on his face.

It was a million things.

And because of that, Life and exhaustion and everything else had to wait.

My kid needed a sandwich…

And I needed to be with my kid.

Drama Free? Not Me!

I'm difficult.  I admit it.  I'm complex.  I'm complicated.  I'm a witch on a broom one minute and an understanding friend the next.

But at least I’m me and I live Life like I’m grabbing onto a car bumper and “skitching” behind it in the winter… deliriously happy one moment, astonishingly stupid the next, always on the brink of something going wrong and madder than hell when it does.

You can say my life contains drama…and I wouldn’t have it any other way.

Besides, how do you get a drama-free life?  How?

People come and go from my life constantly.  The other day I posted on my facebook page that I walk through people’s lives and sometimes I stop to chat.

I ran across someone a few weeks ago that said something akin to that they wanted friends who were drama-free.

Well, that would not be me.

I may not gossip about my co-workers.  I don’t have drug or alcohol dependencies.  I’m not fighting with an ex. 

I don’t even care all that much about my weight.

But I do have children and one of them has a disability.

That, by itself, is all the drama my life has room for.

I cry.  I scream.  I complain. 

I write letters and stand up for my son (and sometimes for myself).  I find strength where I never thought I had it.

I have little patience for people’s ignorance and basically want to smack them upside their heads and shout, “Listen!  You might just learn something.” 

I fight.

And when I can’t seem to fight anymore… I feel like I don’t have anything left… I fight some more.

Thus, I’m moody.  I’m sensitive.  I’m needy.  I’m demanding.  I need more hugs than a hug convention can give.

And I need friends.

Friends to talk to.  Friends to bitch with.  Friends who will listen even though they have heard it all before.

I need friends to reach out to after that phone call from school, the email that contained news of another dead end, the mail that brought yet another insurance denial.

I need friends for those quiet times… the times when I am in my head and I am overwhelmed by the tasks that lie ahead of me, the sheer magnitude of details that go into raising an autistic child, or the fear of a future that appears to be approaching all too quickly.

So to those people who want drama-free friends, I’ll say this…  I’m just going to keep walking.  I’m not going to stop and chat.

I don’t know how you get to be drama-free.  Is it from living in a perfectly controlled bubble?  Is it from not interacting with people?  Is it from not having passion and fire?

Because I have passion and fire….

And while my life can sometimes be really hard and sometimes can really suck, it also can be rewarding and beautiful. 

Do you know that Sean put on deodorant the other day without me telling him?  How long have we been working on that?  Four years?  Five?

I practically jumped for joy but I didn’t.  I quietly celebrated in my head.

And then I remembered that the mask of drama has two sides… one happy and one sad.

So if you want to have a drama-free life and erase all the bad then you’re also going to have to get rid of all the good.

Sean put on deodorant the other day.  Imagine that.

That’s drama.  That’s my life.  And I’ll take it any day.

You…the person who won’t be my friend…can just watch me walk away.

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.