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.