Back to School: Pencils, Notebooks & Prozac

It’s back to school time and you know what that means.  Searching the stores for just the right backpack, sniffing dry-erase markers in the school supply aisle to find some that don’t smell like jet fuel, and dragging your kid through the shoe store looking for sneakers that don’t squish his toes or cost more than your car payment.  Ah, don’t you just love the smell of school buses in the morning? 

It’s all worth it though, right?  Because as much as we love our sweet little darlings, we’ve spent most of the last three months within twenty feet of them and if we have to hear one more argument about who left the TV remote where the dog could get it, or why they should get more time with their nosed pressed against a TV screen/computer monitor (because apparently six hours a day of video games is not enough and besides, sunshine is evil) our brains are going to melt and run right out our ears.  We love our children, but by the end of summer we find ourselves driving by our kids’ school looking for signs of life and fantasizing about five minutes of peace and quiet all in a row.  Is it any wonder that we’re willing to pay three times the going rate for stationary supplies if they’re covered in cartoon characters just to get our kids excited about school and out the door? 

But for a lot of us, the feeling of giddy joy the thought of the school bell ringing brings is tempered with a feeling of dread.  Because if you’ve got a kid with Asperger’s/high functioning autism/similar (a kid with ASRD – Autism Spectrum and Related Disorders), you know there’s a good chance the beginning of the school year is going to be a bit rocky.  By rocky, I mean perhaps getting a telephone call by lunchtime where your part of the conversation sounds like this: “Yes, this is Mrs. Zupke.  Yes, I’m his mother.  A problem?  In the teacher’s lounge?  The whole cake?  Dry cleaning bills for how many teachers?  Yes, of course, I’ll be right down.”            

In short, you’re worried.  The first few weeks of school haven’t always gone smoothly before and you’re not sure they will this year.  In the past if your child had a great teacher, you’d done a good enough job of prepping him, his medicines were in balance, and he was willing and able to keep it together, the school year may have gone well.  But that’s no guarantee this year will.  What if the teacher doesn’t like him?  What if she doesn’t know about autism?  What if the other kids are mean to him?  What if he gets anxious or frustrated or confused and has a major meltdown?  What if he has a hard time at lunch?  What if he can’t keep up with the note taking or abstract thinking or homework required for the class?  What if one of the hundred other things you can’t anticipate or prepare him for happen?  What if?           

Back to school time can be really hard on parents of ASRD kids.   It can be hard on our kids too.  Over the summer everything has changed and they can have a hard time adjusting.  “I hate this new teacher!  She wants me to do my math homework this way but that’s wrong!  Last year’s teacher told me to do it the other way.  And what’s with this symbolism stuff in language arts?  The teacher keeps asking me which part of the story shows that the character is sad but the story doesn’t say that, it just talks about sunsets and darkness and stuff.  If the author meant he was sad he should have said so.  And the kids in my class are so mean!  Last year they all liked Pokemon but at recess today when I showed them my new cards they told me I was a stupid baby.  And I don’t know which bus I have to get on to get home.  What if I get on the wrong bus?  Will I get lost?  Will I have to sleep at the bus garage tonight?  Which bathroom am I supposed to use this year?  The air conditioner in the classroom is so noisy.  When is this stupid day going to be over?!?”           

The beginning of the school year isn’t always easy for your child’s teacher, either.  She spent the summer getting her lesson plans together and figuring out how to teach to state standards without boring her students into puddles of goo.  When she arrived for the first day of school her mail slot held seven messages from concerned parents, reminders for a grade level meeting, a note telling everyone to ante up for the coffee fund, and a memo from the principal stating that two more students have been added to her class and it will be a week or so before enough textbooks can be found.  In the few minutes she had before she opened her classroom door and met her new class, she double checked her seating chart one more time.  Kid with ADD near the front to reduce distractions.  Check.  Kid with ADHD in the back so he can fidget.  Check.  Kid with bladder difficulties near the door.  The twins on opposite sides of the room per mother’s request.  Kid with ASRD in the front row, on the end so he’s away from the fan and there’s room for his aide and he’s not near the class pet because he thinks guinea pigs stink and he’s not by the solar system poster because deep space makes him nervous.  Check.            

An hour later the students are in the room, introductions are done, and the first assignment announced.  Twenty nine kids have their heads down and pencils moving, busy writing paragraphs about what they did that summer.  One child is scowling at the teacher, teetering on the edge of a meltdown as she tries to explain nicely for the fourth time that writing “I played video games,” over and over does not count as a paragraph and surely he must remember at least one other thing he did in the last three months.  She smiles as she looks at the clock and realizes it’s a very long time until June.

It would be nice if any of the pretty back-to-school supplies offered up by stores could solve the problems ASRD kids, their parents and teachers face each year – that if we just bought the right pencils or notebooks then our children would slide easily into the new school year – no fuss, no muss.  But it doesn’t work like that.  Getting acclimated to a new school year is like running sandpaper across a knotty log.  It’s hard work at first.  Eventually though, with a lot of work and a lot of care (and a little swearing), some of the bumps in the classroom routine even out and everyone can relax.  The knots in the log don’t go away; there will always be a few hard spots.  But hopefully with patience, persistence and familiarity, the knots are smoothed out enough to get rid of the splinters while letting the wood’s quirky beauty shine through.  Yeah, our kids aren’t easy – but they’re worth it.

So, hang in there!  I know the start of school isn’t easy, but by Christmas things will have settled down a lot.  Kids, teachers and parents will all know each other better and hopefully will have figured out how to make things work.  Until then have patience with each other, bring chocolate to all your parent/teacher conferences, and take your kid out for ice cream.  It really will get better. 

– Cassie

P.S.  This blog post is dedicated to Brynn and all the other parents out there who spent the last few weeks nursing a stomach ache because you’re worried about the start of school.  You aren’t alone!   We’ve all been there.  It gets better, I promise.

Share

Your Kid is a Geek (and That’s a Good Thing)

Before you flip out because I called your kid a geek, you should know that the word geek doesn’t mean what it used to.  When we were kids, if someone called you a geek it meant they thought you were a lame-o, weird, irrelevant, loser who wasn’t fit to live on the same planet with more socially adept and popular people like them.  It was a delineator.  Normal people here, you pathetic freakazoids over there, and don’t even think about talking to us because, ewwww.  Isn’t adolescence fun?

But times have changed.  While we haven’t managed to completely get rid of kids who live to torment others, we have carved out more territory for our side.  Attitudes are changing because now geek, and all it entails, is cool.  It’s not geek anymore, now it’s Geek – with a capital G.

Before we go too much further, let’s look at the definition of the word geek, ala Google’s dictionary:

  1. An unfashionable or socially inept person
  2. A person with an eccentric devotion to a particular interest; for example: a computer geek
  3. A carnival performer who does wild or disgusting act

Now, I’m going to make a wild guess that your kid probably isn’t a carnival performer, which is just as well because that definition of the word geek hasn’t been used much in the last fifty years.  Typically when we’re talking geek we’re using the first and/or second definitions.   I’m betting that your child/student fits both those definitions to a tee, otherwise why would you be reading a blog about Asperger’s?  Socially inept with an eccentric devotion to a particular interest – add sensory issues and you’ve got yourself a diagnosis.  You’ve just crossed the line into Aspie-land

So, does that mean people with Aspeger’s are Geeks?  Yes.  Does that mean that all Geeks have Asperger’s?  No.  If you’ve got an undying love for anything to do with lighthouse lenses but have great social skills, you’re still a Geek but you don’t have Asperger’s.   To have Asperger’s you have to have some social impairments, for instance, knowing everything there is to know about lighthouse lenses except that you shouldn’t talk about them incessantly to your co-workers.  That’s where you cross the line from “social and interesting” to “socially interesting.”

Why is whether your child is a Geek or not important?  Because right now our society says being a Geek is a great thing.  In the olden days when you were in high school, Geeks were in charge of the audio/visual equipment, but who cared?  If you didn’t need to run a movie projector they were useless.  But these days everyone wants the fastest computer, the latest video game, most awesome photo editing software, more feature-packed phones, etc.  And who delivers all that?  Geeks.  And who makes money by inventing all these new things folks must have?  Geeks.  All of a sudden, being smart came back into style.  

Being a Geek is one of your child’s assets.  It can provide connection to a social group, employment, self-esteem and a refuge for your child.  Also, it’s a part of him.  We need to accept the Geek in him and embrace it, so he will too; because ultimately it’s not whether we or the rest of society thinks he’s cool – he has to be happy with who he is and make his strengths work for him, whatever they are.

I’m going to talking a lot about Geek in the next few blog posts.  From its culture (“Geekitude” – the noun, not the organization; “Geek cred” – like “street cred”; Steampunk and other universes), to its uses (finding your Geekverse – how to find friends with similar interests; turning passions into employment; using Star Wars to teach your child to write), to fun stuff (how to build a trebuchet, the best place to buy modifiable top hats, and why comic book protectors are so important.)  We’re going to cover a lot of ground – not just because Geek is fun, but to investigate how someone with Asperger’s can make their inner Geek work for them.

So here’s your homework.  First, if you haven’t already subscribed to this blog, consider it so you can keep up with the discussion.  Second, comment on my posts – your opinion gives us all a more broad understanding of whatever we’re discussing.  Third, do an internet search on your child’s interest and the word geek.  For instance “Star Wars geek”, “football geek”, “light bulb geek”, etc.  Does anything interesting come up?  Did you find any social groups relating to his interest?  How about future employment ideas or fun activities?  Write a comment and let us know what you found and what you think of it.     

For extra credit – prove to yourself that your kid isn’t alone in his special interests.  Do a search on his interest plus the word tattoo.  See, there are a lot of folks out there who are just as interested in the same things he is.  Not that I’m suggesting your child gets a picture of Pikachu inked on his forehead, but you’ve got to admit it would be a great way to find other folks who think like he does.  Just kidding.

 

Share

Courage

“Courage is about learning how to function despite the fear, to put aside your instincts to run or give in completely to the anger born from fear.  Courage is about using your brain and your heart when every cell of your body is screaming at you to fight or flee – and then following through on what you believe is the right thing to do.”

Jim Butcher. Ghost Story: A Novel of the Dresden Files. USA: Penguin Group, 2011

In Jim Butcher’s book, Harry Dresden is a wizard’s ghost who’s about to wade into battle against an army of ghouls who can rip him to shreds.  Not only are they eager to tear apart the remnants of his soul, they’re lining up to eat the pieces, so yeah, he’s got good reason to be afraid.  But Harry jumps into the sea of claws and fangs anyway in order to save the people he loves.

As the parent of a child with high functioning autism, I can relate to that.  

Not literally, of course.  Fortunately in my day-to-day life I’ve never bumped into a malevolent soul-sucking member of the undead, much less a horde.  What I mean is that as the parent of a special needs child there have been times I had to reach deep inside myself to find the courage to overcome my fear and anger so I could do what I needed to do to help my child.

For instance, when my son was in third grade his anxiety reached an all-time high.  Several times a day he’d have screaming fits that lasted an hour or more.  I was getting phone calls and having impromptu conferences with his teacher almost daily, plus having to deal with his emotional rollercoaster at home.  It went on for eight months.  I got to where I didn’t want to answer the phone for fear it was the school calling to tell me what havoc my son had caused that day.  I didn’t want to be the one to pick him up after school because I didn’t want to face the teacher’s status report.  I also didn’t want to take him back the next day with a smile on my face and a new plan in my pocket so we could try it all over again.

What I wanted to do was rip my phone out of the wall.  I wanted to move to someplace where autism hadn’t been invented so my son wouldn’t have to live with the anxiety and rage that tormented him.  I wanted to go to the empty school on a weekend and see what damage a flame-thrower could really do.  I wanted to scream at my husband, my son’s teachers and  his doctors that they weren’t doing enough and that their ineptitude was hurting my baby. 

I was scared.  Every day I was afraid of what my child would have to suffer, then and in the future.  I worried he’d grow to be a 6’3” adult who went on screaming rampages until his actions caused society to lock him away.  I was afraid that eventually he’d hurt someone – another child, an adult or himself.  I was terrified.

Maybe it would have been a little easier on me if the teacher had been a slobbering ghoul intent on the destruction of my sweet boy.  It would have given me a target – an evil I could fight and overcome, a problem I could solve and be done with.  But she wasn’t.  She was a wonderful woman who was doing everything in her power to help him.  She’d optimized her classroom, teaching methods and routine to make my son’s life easier.  An aide was there to help him through his hard times.  Homework and class work were modified based on his day-by-day abilities.  His teacher and the rest of the school staff were doing all they could to help him, as were my husband and our doctors.  The difficulties in his life were not inflicted on him by a monster I could kill.  They were ongoing and nebulous and nothing I was doing seemed to have any impact.

As I said, I was terrified.

My son was being held hostage and there was nothing I could do.   But I knew that if I did nothing I was abandoning him to a lifetime of fear, anger and eventual confinement.  I didn’t know what to do to help him, but I knew I had to keep doing everything I could in order to find an answer.

That meant I had to have the courage to face his difficulties and meet them head on.  If I wanted to solve this problem I was going to have to take a very realistic, very detailed look at all the bad stuff that was happening.  I couldn’t gloss over behaviors because I didn’t like what I saw.  I couldn’t blame someone else for his actions or hope that it would all just go away.  Denial wasn’t going to help my boy. 

It meant I had to answer the phone each time it rang and meet with the teacher every day after school; I had to get specifics on my son’s behavior.  What was he doing before he threw the pencil box?  Was the other student hurt, upset or scared?  Is my boy likely to throw the pencil box again tomorrow?  As much as I wanted to hide my head in the sand and pretend my son’s behaviors weren’t all that bad, I couldn’t.  If I wanted to help him, I had to be willing to examine every detail of his difficulties so I could search for clues to a solution.

I also had to adjust my son’s medication.  That meant talking to several different doctors and learning more about psychotropic drugs and their side effects than any parent should have to.  How likely is weight loss with this drug?  Liver damage?  Suicide?  I had to make the decision – is the risk of possible side effects worse than what he’s suffering now?  And when that drug didn’t work I had to make the decisions for the next one, and the next one, and the one after that, each time gambling with my son’s health in an effort to help him.

Helping my son overcome his anxieties took every scrap of courage I possessed and more.  I had to look honestly at his difficulties even though they scared the heck out of me.  I had to find ways to deal with my anger other than pouring it out on people who were only trying to help us.  I had to make decisions I didn’t want to make.  And each day I had to get out of bed, put a smile on my face and assure everyone that we’d find an answer, if not today then tomorrow. 

It wasn’t easy, but we made it.  After eight months of behavior therapy, medication changes and countless teacher conferences, we found a way for my son calm himself enough to function and be happy again.  It was eight months of hell, but we survived.  I relaxed back into the life we’d had before it all started – baseball, pizza and homework – grateful that we’d gotten our peaceful home back again, and carefully ignoring the small voice in my head that said we could lose it all again in a heartbeat.

The point to my story is not that I’m Superwoman and I rocked that challenge; far from it.  My point is that life with a special needs child comes with times when it takes every ounce of courage we have just to make it through today and tomorrow.  But you knew that already, right?  Because if you’re reading this, you’ve been there.  You’ve lived through those times when you lay in bed at night, looking up toward the heavens, wondering how you and your  family were going to make it through this.  You’ve stayed in there, day after day, fighting the good fight.  Or maybe you’re still in the middle of your battle, giving everything you’ve got to help your child.  Hang in there.  Your actions are helping, even if it doesn’t seem like it today.     

Courage.   That’s what I’m celebrating today.  Your courage.  The courage of all the parents who face their child’s challenges head on, even when they’re afraid or angry or tired, even when they don’t want to.  For all the times you’ve plastered on a smile, stayed calm, resisted the urge to fire bomb a building and instead took donuts to a meeting to thank everyone for trying to help your child.  Our life isn’t always easy, but you guys are doing it.

Good job.

 – Cassie

P.S.  If you’re into reading science fiction/fantasy and haven’t checked out Jim Butcher’s Dresden Files series – do.  That guy can throw down some serious ink.

Share