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.