The Road Behind

Almost the last day of the year and while I’m not one to look back, it might do me some good today.

It’s funny how I’ve always given that advice to friends but rarely take it myself.  I tell them – when they are facing an uphill battle, an unending stack of “to-do’s” – to look at all they have accomplished instead of the long road ahead of them.

So I will do that today…

Sean is constantly talking about what an amazing year he has had.  And it has been.  It really has.

He graduated from 8^th grade… started high school.  He’s navigating the halls by himself.  He’s doing well in his classes.

Sean even went up a rank in Boy Scouts.  He’s now at Life…just one step from Eagle.

Who would’ve thought?

I wrote in an article earlier this year that I never mourned the loss of Sean’s potential when he was diagnosed.  I went into it with the attitude of “Let’s see what he can do and go from there.”

And look how far he’s come….

Unbelievable.

A scene from a zillion years ago keeps flashing through my mind though.  It’s so real it’s as if I’m walking those steps now.

Sean was in second grade and still at our local school.  I would pull up in front, park my car and walk Sean and Carissa over the paved playground lot and send them in through the front doors.

The feeling that I was feeding my son to the sharks always left me unsettled on those days.

What was going to happen?  Because surely something would…

When was the meltdown going to occur?  When was the outburst, the desperate attempt to escape school going to make a good day into a bad day?  How bad was the bad day going to get?

It was always going to be something.

And I hated those mornings.  The joy of walking my kids to school became a test of sanity that I wasn’t sure I could take.

Was I doing the right thing by handing him over every morning?  Clearly, he did not belong in the school but where did he belong?  Who could help him?

And then 3:30 would come around and I would wait at the back doors.  They always let Sean out a few minutes early because he would run out and they felt he was a danger to the other kids.

Seriously…

I remember one of my girlfriends standing with me and saying something about the look on my face.

It was always stressed…always anticipating bad news.

With one look from the teacher or the school psychologist or the social worker through the window on the door, I knew I had to steel myself for what was to come.

What happened now?

Did he kick someone?  Bite someone?  Who did he push trying to get away from whatever it was that was so terrifying to my child?

What did they do to him now?

While years have passed and our lives have been filled with more steps forward than backward, those moments and feelings remain fresh in our minds.

Will they ever fade?

To hear Sean talk about his early years…about those times… you hear the pain in his voice and know that he is re-living every emotion…as vivid and painful as they were at that second in time.

It’s difficult to listen to, let alone walk those steps with him.

But then the channel in his head switches and Sean talks about how great 2012 was.

Yes, Sean.  Yes, it was.

You graduated from 8^th grade and we couldn’t have been prouder.

You started high school.

We’ve had our bumps and bruises.  We’ve had our calls to the crisis team as you escape to the bathroom to have your meltdown.

We’ve had our moments of wondering what to do next or if what we are doing is right or wrong.

But you’ve done good Sean.

You have persevered and worked so hard.

You’ve lost your pencil case twice – in the same day – and yet somehow got through to the dismissal bell.

You’ve survived bullying and the madness in the hallways.

And you’ve come home with a coat we’re not sure is yours…oh, and a pair of socks.

But you’ve done good Sean.

You have everything to be proud of as you look back at the year.

And so do we….

While the road ahead will always look far scarier than it actually is, the road we have conquered, that hard, bumpy, sometimes impossible road, is behind us.

We can always remember that road.  We will remember that road.

But look how far you’ve come Sean….

Just look how far you’ve come!

Screw Santa

“I’m nervous.”

I pause in the hallway putting a temporary stop to my quest to get the laundry done and put away before Santa comes.  Did I just hear something?

“Mom, I’m nervous.”

Crap.

I did.

“Yes, Sean.  What are you nervous about?”

“Tomorrow.”

I’ve had a rough day – my first attempt ever at making no-bake chocolate-covered, peanut butter balls (also known as “Reindeer Balls”) has failed miserably and I can’t even begin to think about my list of things to do.

Thus, I lose it.

“Sean, it’s Christmas *&!#@  Eve!  What could you possibly be nervous about?”

I’m expecting him to say something like the noise, the people, the food, leaving the house… anything that would be rational and understandable.

But no….

It’s something entirely different and something I can’t prevent or avoid.

Ah, but I can….

“Then stay home,” I tell Sean.

And I mean it.  I really do.  How many holidays do you just give in to autism or whatever disability your child has and say screw it, we’re staying home?

As people hustle and bustle about, buying this or that, cooking for hours on end, and traveling to far away destinations…

How many of us are staying home?

We can’t buy the latest in technology because all of our extra money goes towards therapies that aren’t covered by insurance.

We don’t travel because it’s difficult enough some days to make it to school let alone over the river and through the woods to Grandma’s house.

We cook but keep to the menu that makes sense to our kids and their texture issues

And we certainly don’t hustle and bustle about…not when there is a strict schedule to keep at home.

No… holidays with a disabled child are different.

They are simple.

Basic.

Sometimes they are little more than a date on a calendar.

Frozen pizza for Thanksgiving?

Done that.

And tomorrow’s menu for Christmas Day?

We’re having pancakes.

No turkey.  No plate after plate of Christmas desserts (Sean doesn’t eat much sugar).

No long car rides.  No airplanes.

No nothing….

Just another day…or as close to it as possible.

Sean will awaken at his usual early hour and dive into his Multi-Grain Cheerios, sans spoon.  He will pay more attention to his computer games than the presents waiting beneath the tree.

His sisters will eventually stir and our Christmas ritual will begin. 

Presents will be opened.  Some will be tossed aside, the excitement from when they were initially put on “the list” to now having seriously waned.  Others will be installed, plugged in, or played with right away.

It should all last about 15 minutes…maybe 20.

And then it’s back to life.  Back to normal. 

Sometime during the day we’ll stop by Grandma’s with Christmas wishes and to collect more loot.

But then it’s home.  Maybe we’ll get a movie from Red Box and watch it.  Maybe we’ll take the dog for a walk.

Maybe we’ll light a fire in the fireplace.

A whole Santa’s bag full of maybe’s but all carefully planned and carried out with the sole goal of getting through the day in mind.

Keep it simple.  Keep it quiet.

Keep it normal.

And as we sit down for our breakfast-as-dinner pancakes and look back upon our day, we will know in our hearts that Christmas is not about fancy food or unwrapping the latest gadget.

It’s about family.

So from my family to yours… we wish you a day full of routine and lacking in meltdowns….

A day full of gratefulness for the blessings in our lives…

And a day to be together – if not hand in hand then heart to heart.

Merry Christmas.

Where There's Mess There's Memories

Sticky fingers.

They have been everywhere in my house.  They have touched every surface, every light switch, every handle.

And I know who the culprit is…

Yep.

Sean.

While he has no problem eating his dry cereal with his fingers or picking up his meat or anything else that usually requires a utensil, he does, however, have an aversion to placing his hands under the faucet for a quick rinse.

Mind you… I didn’t say, “wash” because that would involve soap.

No… I’m just asking for a lightning fast run through a stream of H20 and wiping them off somewhere other than his pants or shirt.

Am I asking too much?

Is this merely a “boy” thing that I am not privy to because I lack the genitalia and really has nothing to do with autism?

I wonder….

In the meantime though I am hounding him at least a few times a day to go wash his hands.

And, as always, futile though it may be, I yell “with soap!”

If he knew how to roll his eyes he would.  Instead I get the sigh and the hanging head.  I can hear his brain asking, “What did I do now?” as if washing his hands was a punishment.

I’ve been a mother of an autistic child for almost 15 years and I am still amazed at how difficult the smallest things can be.

I have to admit though that something might be clicking in his head with regards to the stickiness of his fingers.

Oh gosh no… not like he would ever wash his hands voluntarily!

But the other day I caught him wiping down the light switch in his room.  Did he make the connection on why his light switch was so dirty?  Probably not.  But where there is one baby step there just might be another.

Who knows?  If this cleaning thing catches on he might start wiping down more surfaces…

Like the mirrors.

Oh, correct that.  Technically, he does wipe the mirrors after he splatters them with toothpaste or water but he uses his hands.

They leave the mirrors absolutely lovely.

Yes…lovely.

Now I know how custodians at department stores feel. 

Seriously???  I just cleaned that!

Every time I reach for the pantry handle and my mind screams a quiet “Yuck!” I think back to the days when the kids were younger.

They were sticky and messy and into something all the time.

Gosh I loved those times.  I miss them.

Maybe by leaving his mark everywhere Sean is reminding me of those times, bringing back those memories, making me relive those days when nothing was more beautiful than a freshly scrubbed face or tender as the tiny touch of a freshly cleaned hand.

Yep… that’s my boy….making me smile yet again.

Or it could be autism.

Or his DNA.

I don’t know.  I’m confused.

Let me think about that while I clean. 

Now can someone hand me the soap?

Can You Hear What I Hear?

Sean is stressed.

It’s 10:30 in the morning on a Sunday and Sean is stressed.

What about?

Who knows?

So many tears lately.  So many heavy sighs.

It breaks your heart and frustrates the crap out of you at the same time.

For goodness sake, what is it now?

School?  Homework?  Bullies?  A new video game?  Daylight Savings Time? 

Oh hell…. Tell me.

And… can it be important?

Yes, I know everything is important.  Everything is an issue.  Everything is a crisis when it comes to your kid having autism.

And it sucks.  Sometimes it really, really sucks.

But then again, every kid has issues – especially when they are 14 and a freshman in high school.

Only with ours, everything is magnified and it becomes an email to a teacher, a phone call to a principal, or merely hours spent dealing with it.

And deal we do…

Every day.

Day after day after day.

My husband and I have this understanding.  It’s almost like a Good Cop, Bad Cop thing.  If I’m crabby and at end of my frustration level with Sean then he has to step in and takeover.

We can’t be crabby at the same time.  We can’t both be having bad days.

I guess maybe that’s good in a sense…

But back to the issues…

Our high school… for some unknown reason…blares music during the passing periods in between classes.

Yep…. loud… very loud….music.

I’ve been there at some of these times and it’s an assault on my senses.  I can only imagine what it does to Sean.

Rumor has it that they do it so the kids will go from classroom to classroom quicker and not linger in the hallways.  The music stops one minute before their next class starts.  It’s a sign that they need to hustle. 

Well, the kids do that but they also talk in the hallway.

Oh, wait… correct that… they SHOUT in the hallway because simply talking is out of the question with blaring crap coming out of every speaker in sight.

Sean has been complaining about his ears hurting.  I thought it was because he tends to slap at his ears when he’s nervous (and he’s nervous a lot nowadays).

But then one day he was crying.  And the issue of his ears became an even bigger issue.

We’re hoping to find the right person to contact to get the music toned down or turned off.  I went to the same high school years ago and we only had a warning bell that sounded with one minute left to get to class.

Nothing else.

Why can’t the kids of today enjoy the same controlled chaos that we had years ago without the threat of being deafened?

But the high school is a big place….

And I’m really sick and tired of teachers and administrators pulling the “Well, I’ve/we’ve been doing this for years (and know better)” crap.

Seriously, give me ONE good reason for the music…. ONE!

It’s not Mozart or anything classical, which supposedly helps the brain.  It’s not anything but loud.

And now it’s an issue. 

 

Sean is currently wearing earplugs when he's in the hallway.  You know... those industrial noise reduction ones?  They are on a string so kids think they are ear buds and that he's listening to music.  We recently bought him a box of 100 pairs.

 

Maybe the music is an issue for other kids as well and they either haven’t told their parents or their parents are thinking someone else will complain for them.

I guess that “someone” is me.

I’m beginning to feel like the Angry Bitch all the time.

Why is it my fight?

Why do I have to call people out when they wrong a child?  Why do I have to be the one that contacts the school board or the administrators?

Why do I have to do it all the freakin’ time?

Why can’t I just sit back and let someone else do it?

I have to do it because he’s my kid.  Because he’s Sean.  Because he has autism.

And many times, what is best for him might also be best for other kids.

So stop the music.  Stop over stimulating these kids in an already stimulated environment.  Let the kids talk and laugh and enjoy their few minutes in the hallway.

And let me enjoy my few minutes…. just a few… when I don’t have to deal with everyone else’s issues.

Because you all know I have enough issues of my own to deal with!

Phone Home

Sean is better than E.T…. the Extra-Terrestrial made famous by Steven Spielberg’s movie back in the early 80’s.

Yep… Sean calls home.

A lot.

Not that I mind.  I don’t mind a bit.

I don’t mind that I carry my cellphone with me everywhere…the bathroom, the shower, when I run out to retrieve the garbage cans from the curb.

I don’t even mind when he phones me while I’m taking a big exam at school.  I always make sure that the test proctor knows that if my phone alerts me then I need to take the call.

And it’s happened.  I’ll be in the middle of taking my test and my phone silently vibrates on my desk.  I look at it… see that it’s Sean… and walk out of the room.

He calls me all the time in between changing classes but most especially after 1^st period.

It’s a class that is way too stimulating for him.  It’s face-paced and verbal-instruction based.  Those are two of the most difficult things for Sean to deal with.

By the time he’s finished in there he’s simply spent.  He’s overloaded.  Overwhelmed.  He’s had enough.

And so he calls me.

“Hi Mom.”

I know from the sound of his voice how he’s doing.  I know the sighs, the breaths, the pauses.

Passing periods between classes last only a few minutes.  Therefore, I only have 60 seconds or so to assess what my son needs from me and get him back on track.

It’s like speed dating…or speed therapy… with Dr. Phil.

“You’re OK Sean.  Class is over.  It’s going to be OK.”

“Mom….”

I try to re-direct him as soon as I can.

“Put it behind you.  It’s over.  What’s your next class?  Go to your next class.  You’re going to have a good day….”

Usually he’ll say, “Math.  OK.  Bye.  Love you.”

And then we’re done.

He goes on with his day and I go on with mine.  But I can never shake that feeling from that first phone call every morning.  I worry.  Is he really going to be able to decompress and carry on?

The length of time before the next phone call comes determines the answers to those questions.

If it’s right after the next class then I know it’s going to be a really rough day for him and that first phone call will turn into 4 or 5 or 6 phone calls to get him through until dismissal time.

I center Sean.  I calm him.

I’m his lifeline.

And if I have to carry my cellphone every single minute for the rest of my life then I will.

Not because I have to….

But because I’m his mom.

And while I’m taking college courses again to find a career…a job… I oftentimes find myself wondering.

As I walked out of my exam today and through the parking lot, I thought, “Why am I doing this?  I already have a job.”

I’m a mom of a disabled child and that means more than anything else in the world.  No job title, no promotion, no paycheck could be more important.

Exams, grocery shopping, even snuggling with my husband on his day off can wait…

I need to take a call.

Controlling the Control Freak

I did something the other day that was completely against my control freak nature.  It was against every fiber of my DNA… against every cell of my being.

I walked away and let someone else handle Sean.

I know!!!!

Unbelievable!

Believe me, it wasn’t easy at all.

My stomach still has that sick feeling in the pit of it from that day.

But everything’s ok and that’s the important thing.

Sean was having a horrible day at high school.  He called me after 1^st period and told me about how hard his class was.  He was down… felt he couldn’t do anything without asking someone for help.

I told him to shake it off…it’s Friday….the class is over…go on and have a good rest of the day.

I thought that was it.

And then he called again an hour or so later.

He was trying to hold himself together.  Finally he got to a bathroom and started sobbing.

Math had done him in.  He had a test and he felt like he couldn’t do the problems.  He had no idea what they were about.

It was gut wrenching to listen to.  Absolutely gut wrenching.

Sean needed to pee.  That’s his “go-to” thing when he’s overwhelmed.

He needs to pee….

I had visions of the cell phone falling into the toilet so I instructed him to hang up with me, go pee, and then to head down to Student Services where I knew he could talk to someone.

Student Services and the nurse’s office were supposed to be Sean’s “safe zone.”

I told him to call me back as soon as he was done pee’ing.

He hung up.

And then silence.

I called down to Student Services to tell them to expect Sean.

But Sean never arrived and he never called.

I was freaking out.  Why didn’t I stay on the phone with him?  Where was he? 

I had my sobbing son on the phone with me while he was in the bathroom and I told him to hang up on me.

What was I thinking???

I called down to Student Services in between trying to get through on Sean’s cell phone.

They hadn’t seen him yet.  Did I know which bathroom he was in?

No.

Why didn’t I ask him?

The minutes ticked by while the school had security do a bathroom sweep.

They finally found him… in class.  Meltdown or not, Sean was still worried about missing his next period.

Nothing like sticking to a routine, huh?

The staff brought him out and down to Student Services where a bunch of people spoke with him about everything that was going on…his classes, the bullying, his life.

They called in the Cavalry and I was thrilled.  Oh, not because Sean had a meltdown.  Rather, so Sean could see that there’s a whole team there to help him when he needs it.  I hope he knows that now.

You’re probably wondering where the control freak in me is in this story, aren’t you?

While this was all going on, I called Rich at work.

“Sean’s missing.  He’s upset.  What should I do?”

Rich said I should go to school…see what I could do.

I grabbed my cell phone and ran out the door.  I arrived at the high school in just a few minutes.

I pulled into the parking lot…maneuvered into a space….

And sat there.

I wanted to go in.  I wanted to find him myself and hug him tight and tell him that everything was going to be ok.

But I sat there instead.

Then I backed my car up…pulled out into the high school driveway…and drove away.

It killed me inside.

What if I was doing the wrong thing?  What if they didn’t know how to handle him? 

Sean’s only been there a couple of months.  How would they know what to say or do to calm him?

Do I turn back?

I drove home and waited.  They said they would call after they got done talking with him.

So I waited.

And then waited some more.

Every minute was like torture. 

I didn’t know what was going on and for anyone who knows me, knows that that kills me.

Kills me…

After a couple of hours I finally gave in to my instincts and called the school.  Sean was fine and back in class.  His schedule was going to be altered and some more help put into place.

Everything was ok…or going to be.

And aside from a few phone calls, I didn’t have to do a thing.  Other people handled it and they did just fine. 

Imagine that?

Don’t get me wrong… I’m not about to give up my title of Ultimate Control Freak. 

But maybe next time I won’t beat myself up in the car so much about not being there.

Then again, maybe next time I’ll just run into the damn school!

 

Another 'A' Word

The other night I was talking with another mom.  We were discussing the “early” years with Sean. 

What a trip down memory lane!  Not one that I wanted to take but necessary all the same.  Now that he’s 14 years old and mainstreamed it’s important that I don’t forget those times.

Then again, how could I?

It was hard…so, so hard.  And it wasn’t just one moment or one day or one year.  It was years and years.

Sometimes I still think it’s hard but talking with that mom… today is a cakewalk compared to back then.

When I say it was difficult I’m not necessarily talking about dealing with Sean.  Sure, the three-hour long tantrums were daily or more than daily.  I remember the scrapes and the bruises…the broken mirror still exists.

I remember how I couldn’t touch him or else he’d swat at me or the hours we’d spend in silence because it was too much for him to hear our voices.

But all of that wasn’t what had me sitting at the kitchen table every day and crying.

No.

It was the schools…the “professionals” who knew better…and all those people who had an opinion and just had to let me know it – especially if it was negative.

How many times have you been told that you needed to be a better parent?

How many?

Is there a parent of an autistic child out there who hasn’t been told that?  Is there??

I doubt it.

I went through a hell that was undeserved, unwarranted and almost killed me.

It took a long time to get Sean diagnosed.  It wasn’t because I was in denial or anything.  Oh, I knew.  For a very long time I knew.

It was everybody else I had to convince.

You can ask for evaluations and they “fall through the cracks.”

You can visit psychologists and they will tell you that they can cure your child in 3 or 4 visits…. I just need to discipline Sean more.

Or you hear from friends that if only I had socialized Sean more…taken him to restaurants or hauled him all over the place… that he wouldn’t be like he is.

You can ask for letters to give to the hospital regarding your son’s behaviour and then find out that the person ripped you and your parenting skills apart in them.

And then, of course, are the people who blamed me for using fertility treatments when “God intended me to be infertile.” 

It was always my fault. 

I had one professional tell me that Sean manipulated me…that I spent too much time with him.

They told me to put him in daycare and get a job.

Nice, huh?

Who they hell are they???  Seriously?

But they get to you.  The comments get to you. 

You’ve been a bad parent and now look what you’ve done to your child.

They eat away at your soul, your spirit.

And you just want to die.

That’s what kept me at the kitchen table all those days.  I’d sit there all day…paralyzed…staring out the patio doors with tears streaming down my face.

And I’d wonder…

Would Sean be better off without me?

I could never leave him.  No….

The only way I’d leave my son was to kill myself.

Yes.

You read that right.

You get beaten down by the people around you…family, friends, the “professionals”… and you get to that dark place and you don’t know how to get out of it.

So yes, it got that bad.  It was that hard.

And it had nothing to do with Sean’s autism.

It had nothing to do with the meltdowns, the doctors, all the what-ifs of autism and had everything to do with the assholes in life.

That’s what they are…Assholes.

Eventually you realize that. 

I realized that.

And they didn’t know better.

I did.

I was Sean’s mom.  I didn’t cause his autism.  It wasn’t my fault and I wasn’t going to let the world blame me anymore.

And you know what?

I’m a damn good parent.

So screw them.

I eventually stopped crying and got up from my kitchen table.  I stopped letting them get to me and I started fighting back.

And I found my voice.

Thank God I found my voice.

So if you get to that point where I was and you feel that “alone” that is so scary to feel, then I’m here to tell you that you’re not.

Our kids may be on opposite ends of the spectrum.  Our lives may be vastly different.  But the frustration, the anger, and the guilt… it’s all the same.

While some may not admit it… I will.

I’ve been there.

And that’s why I write.

Am I THAT mom? Hell yea!

The “Big Night” finally arrived…

It was Homecoming for Sean at the high school.  Huge event.

I knew this day was coming but agonized over what to do…how it would go down.  Dang, I sound like a cop.

Would he go with a date?  Would he go with a group like most high school kids do nowadays?  Would he go alone?

Would he go at all?

Would he care?

When Sean brought up the idea my husband said, “No.”  I’m not sure if “absolutely not” was added but you get the idea.

I don’t think my husband ever went to Homecoming.

But Sean wanted to go.

And I wanted him to change his mind.

He didn’t.

Thus, off I went to school one day to buy his Homecoming ticket.  It cost only $15 so if he changed his mind it wouldn’t be that big of a deal.

But he didn’t.

And Rich and I were left wondering what to do.  All sorts of things ran through our heads…imagined and real horrors of experiencing high school dances way back in the 80’s when security was lax.

Drinking, smoking, kids making out….

Now it was my turn to say “Absolutely not!”

But I didn’t.

No… instead I volunteered to help out that night.

Yep, you read that right.  Helicopter Mom to the rescue!  Some of my family chastised me for my altruistic efforts.  My friends made fun of me.

“Cut the chord.”

“Let him have a life.”

“Don’t be THAT mom!”

But I am.  I am that mom who worries and wonders.  I am that mom who wants to be there for their child…needed or not.

And so I was. 

I put my best respectable mom clothes on, some semi-sturdy shoes, and volunteered to work at the dance.

OK, give me some credit…  I asked to be far away from the action…in the coat checkroom.  At least I didn’t volunteer to watch over the dance floor from the balconies!

I could have but I’m sure if I actually witnessed what went on on the dance floor…well, I’m positive this would have been his LAST Homecoming Dance!

Set up in a corner of the cafeteria, I worked a glorious three hours checking in six-inch heels and babysitting cell phones. 

Sean came by a couple of times – looking amazingly handsome in his borrowed tie - to tell me how his night was going.  Did he dance?  Yes.  Was it with a girl?  Sometimes.

For the most part though he hung out in the lobby.  The music was too loud in the gym and it hurt his ears.  Next time he wants to wear earplugs. 

Next time?  Seriously?  I have to endure all the what-ifs of tonight all over again? 

To quote Sean… “Great”… but put a groan on the end of mine.

As the night came to a close and the tie came off, I asked Sean if he had a good time.  He did.  He was so excited to experience a major milestone of being a teenager in high school…going to his first Homecoming Dance.

It wasn’t the experience of most of the kids that night.  No big groups of dancing sweaty kids.  No shouts of “Seniors! Seniors!” from the dance floor.  No sneaking off to the back staircase for a quick kiss (at least I hope not!).

He was by himself the majority of the night….pacing at the top of the stairs leading to the gym… alone amongst over a thousand of his classmates.

But he was there and that was the most important thing for him…being there.  Oh, and of course, all the girls, too!

And I got to be there as well…safely tucked away…but always at the ready.

I am, after all, THAT mom.

 

 

 

 

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.