Monday, July 11, 2016

Be Effin' Fearless!

I need an outlet.  I need a fun activity, and it’s all right if I’m no good at it.

It’s important for me to be a good mom, wife, teacher, and friend.  I’m prepared to suck at everything else.  And I do.

Here’s my thesis:  Don’t be afraid to try something new and suck at it.  In fact, seek out opportunities to suck.  It’s fun!

The other day, I suggested to a friend that we go do one of those paint and sip art classes.  You know the ones?  You drink a bottle of wine and two hours later, you’ve got a painting in your hands?  My friend said, “But I have no artistic ability.”  To which I said, “Who the hell cares?”

Yeah, I framed it. 
I go to these classes and paint with the joy of a four year-old.  At one class, I sat next to my lovely sister-in-law, who is studying to be an art teacher.  She has…what are the words?  Skill and talent.  Yes, she’s actually really good.  So while she was stepping back and looking at the composition of her piece and carefully blending colors, I was merrily slapping the canvas with a brush and saying things like, “I like your painting!  Do you like my painting?  I like my painting.”  Exactly like a four year-old.

Life is so much more fun if you give yourself permission to do something and NOT be good at it.  So I’m not a good painter.  That’s cool.

I’m not a very good triathlete, either.  This will be my ninth summer of racing, and I always placed in the bottom third of my age group.  I’ve never cracked middle-of-the-pack, and it’s fine.  I do it, anyway.  It’s not even that I like running!  I’m slow and my right knee knows when it’s going to rain, but even as I’m running, I think, “This is the easiest part of my day.”  It is so empowering to do something that many people think is really hard, and know that everything else you do in real life is actually harder.  Think about it.  What’s harder than being a special-needs parent?  Nothing!  Racing gives me a sense of accomplishment. Finish lines are nice.  Finish lines next to beer tents are even nicer.

So if you’re thinking about trying a race, but you’re afraid of coming in last, don’t worry!  It doesn’t matter.  If I happen to cross the finish line before you, I will save you a beer!

And then there’s acting.  I do plays once in a while, and it’s great fun.  My acting chops are at an acceptable level for community theater.  (I’ll let you draw your own conclusions here.)  But even at this level, friends will ask me the questions.  How do you learn all those lines?  Weren’t you nervous?  What if the scene gets messed up or you forget a line?  Isn’t that embarrassing?

Embarrassing?  Maybe, a little.  More embarrassing than dealing with a DEFCON 1 meltdown in Target?*  No.  More embarrassing than having to climb into the plastic tubing at the McDonald’s Playplace to retrieve a defiant child?  Never.  Community theater is easier than parenting.

Everything is easier than parenting.  Parenting is the most important thing we do, so we need to reserve all our strength to do it well.  Let’s cut ourselves some slack on the rest.  We need fun.  So think about something you’ve always wanted to try…and try it!  Get on out there and don’t be afraid to SUCK!

*Contrary to popular belief, DEFCON 5 is the best state of affairs.  DEFCON 5 means peace.  DEFCON 1 is World War III.  Go back and watch War Games.  I’ll wait here.

Friday, March 11, 2016

"I'm like...angry at numbers."

These words, spoken by Butt-Head, the bard of my generation, used to make me laugh.  They conjured my struggles with long division, algebra, and my difficulty having any concept of time.  Numbers were never my friend and I could never make them go away.  They used to annoy me, but now they truly anger me.   

Numbers effin' haunt me.  I did my first triathlon at the age of 34, after having spent my youth being decidedly unathletic.  Before I started training, I had never run more than one mile, and that was ONE time in 10th grade gym class.  So when I crossed the finish line, I felt amazing!  I did it!  I could do anything!  And then I made the mistake of looking at the race results.  I had finished dead last in my age group.  Effin' numbers.  I then tried to comfort myself with another number:  I had actually come in ahead of another woman who was 10 years my junior, but decided she must have run the entire race while carrying a full bag of groceries.

I used to joke that I became an English teacher in order to avoid numbers, but there's no avoiding numbers.  I love my job, but I HATE grading essays.  I hate putting a number value on their work.  I would much rather write comments all over it and hand it back.  "Here you go!  This is what you did well, and this is where you need to improve."  No numbers, just feedback, because numbers are heartbreaking.  I remember sitting with a weepy girl who was so frustrated that she wasn't getting A's.  (Gone are the days of rewarding effort; we're required to grade off a standards-based rubric.  Thanks, Common Core!)  She was working so hard, but she wasn't meeting the benchmarks for an A.  I remember taking out her portfolio and spreading her papers all over the table.  Her early writing was really weak and unfocused and now she was doing solid B work.  I tried to get her to see past the grade and look at the big picture. 
"Look," I said to her.  "Look how far you've come.  You've gotten so much better at this!  Can you see that?  Can you see how hard you've worked and how much you've improved?  You should be so proud!"  I was rewarded with a sniffling, teary attempt at a smile, but I don't know if I really got through.

Which brings me to my current anger at numbers.  In advance of my son's re-eval meeting, I was sent his test scores.  They wanted benchmarks, and I understand that.  Still, it's hard.  See, I try really hard to focus on the big picture.  I remind myself how happy I was when, at two, my son learned to sign "more" and "more milk," because he was effectively communicating his needs in a way that was much nicer than screaming and throwing his dinner against the wall.  Now he can make such requests as, "Go to the restaurant for pizza and pasta and cheeseburgers and french fries and chocolate milk and ice cream, PLEEEEEEEZE!"  Now that's progress!

So to see, in black-and-white, that my son scored below the first percentile in linguistic concepts and sentence comprehension was a gut punch.  To see, in black-and-white, that he still exhibits "severe receptive, expressive, and pragmatic language deficits"--even after all the hard work from everyone involved--is very, very hard.  And I'll admit it.  I cried.

Black-and-white sucks.  Numbers suck.  I have to talk myself down.  I have to focus on the big picture.  I have to remind myself of my own words:  "Look how far he's come!  He's worked so hard!  You should be proud!"

And I am proud, because we're all working hard, and he is getting better.

Also because he can say, "Fuck it!" like a champ.

Saturday, January 9, 2016

Scripting: The Good, the Bad, and the Smelly

     "I mean it!  Bath time is over!  It's time to get out of the tub!"  I was getting annoyed.  He could tell, and he was delighted.  He wriggled his bare butt on the bottom of the now-empty tub, and shouted, his voice echoing against the tiles.
     "If you make one more move, Mister!  If you put one fin on that boat...Nemo!"

And then it was my turn to be delighted.  Yes, he was scripting, but it was quasi-appropriate.  He was telling me that I was being a nag, that I sounded like Nemo's scolding dad, Marlin.  He was communicating and joking with me.  Teasing me, if you will.  I loved it.

Yesterday was a different story.  When I picked him up from aftercare, the director pulled me aside.

     "There was an issue on the bus," she whispered.  "He was being fresh."
     "Oh, no.  What did he do?"
     She lowered her voice even more.  "He said shut up.  It's not a phrase we use here."
     "Nor do we," I assured her, stifling a laugh.  We say just about everything else, but we don't say "shut up."  He was probably scripting off a YouTube video, but it could have been so much worse.
     "I had him apologize to the bus driver," she told me.
     "OK," I said.  "But that will probably just make him do it more.  It's best to just ignore the unwanted behavior."
     "I understand.  It's just that the bus driver was upset."

If the bus driver was upset by "shut up", it's a good thing she wasn't in my car that time the Boy finished his ice cream and asked for more.

    "No more ice cream," I told him.  "You've had enough."
     "Fuuuckin' SHIT!" he shouted in a pitch-perfect imitation of my husband, and spiked his empty ice cream cup on the floor of the car.
     "Don't react.  Don't laugh.  Don't say a word," I muttered through clenched jaw as Big Bro quivered with silent laughter and real tears ran down his face.  I don't know what was funnier--hearing my autistic son curse like a pro or watching my 13 year-old struggle not to laugh.  I'll admit, it was entertaining as hell, but you know what?  We didn't react, and that particular expletive wasn't repeated.

The bus driver probably wouldn't like to hear my son script entire conversations in all of our voices, especially those of a personal nature:

     "Oh my gawd!  What is that smell?"
      "I'm sorry!  I couldn't help it!"
     "What did you eat?"
     "Dad, you FARTED!"

Yep, she probably wouldn't approve.  That script keeps happening because we're awful people and we laugh at it.  Can't help it.  The kid does great impersonations!

But the key is to ignore the unwanted behavior.  If you tell my kid not to do something, he will do it just to mess with you.  It's just his way.

So I wasn't at all surprised to hear that he was yelling "shut up" on the bus again today.  Duh.  Since I don't see the driver, I contacted his case worker and asked her to give the driver some strategies for dealing with this.  I'm glad I've got a go-between to deal with these complaints, because if this keeps on, I may have to give her a number of informative pamphlets on autism.

Or maybe I'll just tell her to shut up.  ;)

(I won't do that, of course.  She's lovely and I'm too polite.)

Tuesday, December 29, 2015

The Trip That Didn't Suck

We went to Hershey Park on Sunday.  The kids went on some rides and ate some junk food.  We went back to the hotel and went swimming.  Then it was dinner at a brewery, the "tour" ride in Chocolate World, and back to the hotel for swimming and bed.

No meltdowns.  From anyone.  A Christmas Miracle.

Now to a "typical" family, our outing may have seemed a little dull.  To us, it was glorious.

We're learning.  I'm learning.

Here's the thing:  there are few things I love more than planning fun vacations for our family.  Our getaways tend to be long weekends, and I do my best to plan them carefully to get the most out of our time away.  My mantra is Maximum Fun. 

I used to take pride in my careful preparations.  (Hell, I still do.)  When Big Bro was three, I timed our Breakfast with Pooh so we'd be out in time to be at the velvet rope when the Magic Kingdom opened.  It was our last day and we had a 2 pm flight.  So when they dropped the rope, I took off!  I sprinted down Main Street, USA, with my son in the stroller, whooping and clapping.  My husband, who didn't understand the deal, jogged behind me and whined.

     "Mel!  What are you doing?  Why are you running?"
     "My baby is getting on the Peter Pan ride ONE MORE TIME!"

I'm MaxiMom, the female version of Clark Griswold.  (And if you know anything about Clark Griswold, you know it all goes wrong.)

I was forgiven for my mad dash down Main Street, USA, but that was before The Boy was born.  The Boy doesn't hold with such planning.

The best laid plans of MaxiMom oft go astray--like the time I spent a fortune on zoo tickets, and he only wanted to look at the pigeons. 
Or the time we went camping at the beach, and the boy and I fell into a cactus. 
Or the time he yanked out his tooth and flashed his junk to the people in the hotel. 
Or the time he had a meltdown in Chocolate World and threw my purse into the ride. 
Or the time he did a Code Brown in the hotel pool and then cried because they had to close the pool because of said Code Brown. 
Or the time he had such an awful meltdown in the car that my friend passed me a flask of bourbon and I actually drank some. 
Or the time at Eastern State Penitentiary when EVERYONE was bitching about everyone else, and I wanted to lock them all up in Al Capone's cell and go get a beer.

Another miracle!

That's usually how our trips go.  But not this time.  This time I didn't worry about whether my kids had gone on enough rides for me to feel like we got our money's worth.  We didn't push.  We kept him regulated.  For example, after two back-to-back roller coaster rides, we chilled out on the monorail.  He got a little upset when his favorite ride was closed, but we substituted another, and everyone was happy.

We plied them with ice cream.

Our treat.
And then there was beer.  Did I mention the beer?

P.S. Hershey Park is wonderfully accommodating with special needs, so if you're thinking about going, I'd highly recommend it.  Any bad experiences we had in the past were our own damn fault.

Oh, and neither Hershey nor Troeg's is paying me for this review.  But I wouldn't say no to free tickets and beer!  (Ahem!)

Wednesday, June 3, 2015

Airing Our Dirty Laundry

I've really struggled over whether I should write about this.  This isn't going to be a funny one, folks.

When I started this blog, it was a totally anonymous place to vent because nobody knew about it.  Now that people read it, I feel so much love and support.  Hey, it's not just me!  I love the feeling of making others feel less alone.  This has led to a that people I know read this, should I edit myself?

I try to laugh and keep things light around here, but we're dealing with some dark, effed up stuff I have yet to mention.

To put it simply, my son's godparents refuse to have a relationship with him.

Two and a half years ago, my son pushed their son, and that was that.  No more holidays together.  Sunday dinners ended.  They will no longer allow their son to be in the same room as my kid.  My son is autistic and therefore a danger to their child.

At first, I couldn't believe it.  I thought I was reading too much into the sudden illnesses and cancellations that prevented them from joining us.  But I wasn't imagining things. My sister-in-law won't have her son at a family event where my son is present, and my brother-in-law goes along to keep the peace.

And listen, I understand their concerns.  My nephew is a little guy and my boy is big.  Their boy wasn't hurt, but we didn't take this lightly.  I've been the mother of the pusher and the mother of the pushee, and believe me, it's much easier to be the mother of the pushee.

I understand the need to be cautious, but how can people cut a child out of their lives?  I've been so full of anger and hurt and how-could-yous, but I've kept it all inside for a long, long time.  As upset as I felt, I kept quiet because my kids didn't know.

They know now.  The other day my husband was supposed to stop by my in-laws' house with the kids, but his brother called and told him not to come over since they were already there with our nephew.  My older son has suspected for a while that his aunt is not exactly accepting of his brother, but now he knows for sure.  He seems hurt and angry and I don't blame him.   

We had to remove their pictures from our home because our little boy would just carry them around and ask to see his cousin.  How do you tell a seven year-old autistic boy that he's not allowed to see his cousin because of something he did when he was four?

I've heard of people who've ended friendships when their friends were not accepting of autism.  What do you do when it's family?  I think my older son put it best when he asked, "How can we expect strangers to be understanding if his own aunt and uncle won't see him?"

How can I possibly shield my children from this? 

I'm beyond caring who's to blame.  It may have been my sister-in-law that put up this wall, but my brother-in-law was handing her the bricks.  By taking the path of least resistance, he allowed this to put a strain on the whole family.  My in-laws are heartsick, hurt, and frustrated.  My husband feels betrayed, and my boys' hearts are broken.

That is one thing I will not abide.  Nobody fucks with my kids.

My husband will do what he thinks is right and I will honor his decisions because it's his brother we're talking about.  But me?  I won't be speaking to them until she grows a heart and he grows some balls.

So, like, never.

And why write this now?  Because words are all I have.  My words won't do anything to change their behavior.  My words won't take away my little boy's confusion or my big boy's bitter disappointment.  My words will likely piss off a lot of people.  I'm doing it because this happened to us and I know we're not the only ones.  I'm writing this for the same reason I've always written--to know that I'm not alone in this.  You're not alone in this.  If you've been rejected by family or friends, I'm standing with you.  And if anyone dares to tell you that your kid isn't good enough, I've got two words for you:

Fuck 'em.

Friday, May 29, 2015

The Effin' Uncertainty

When I was the mother of one neurotypical child, I bore witness to what I thought was much needless parental hand-wringing.  I would hear mothers lament, "Parenting is so hard!  Children don't come with instructions!  It's so difficult to know if you're making the right decisions!"

And I would wonder what the big deal was.  Yes, parenting was difficult, but what were the tough choices?  I knew what the "right thing" was.  Teach him "please" and "thank you".  Have a consistent bedtime.  Sweets in moderation.  If he doesn't want to play sports, don't make him play sports.  If he wants to play sports, let him play sports.

And no, you don't have to hire a freakin' batting coach.  This is tee-ball, people.

I may have been a tad smug, come to think of it.

Well, if neurotypical children don't come with instructions, imagine the plight of the autism parent.  No instructions!  Conflicting instructions!  Instructions that suggest if you eff this up, your child will lose any chance of becoming a contributing member of society.  Instructions that suggest that if you use the wrong instructions, you're violating your child's individuality and person-hood, and scarring them for life.  You're compromising their immune systems.  You're poisoning them.  You're not advocating enough.  You're enabling them.

In short, you suck.

For the most part, I've managed to avoid these conundrums by going with my gut.  But it is hard to know if you're making the right decision.  Here's a sample autism parent test question:

Your child is displaying aggressive behavior at school.  Do you:
a)  Call the school and ask for a meeting.
b)  Call your doctor and discuss a medication change.
c)  Work with the therapist on new trials to address this behavior.
d)  Make changes to his diet.

The answer is:  YES.  (At least that's how we roll.)  Because you are in crisis mode, you want the problem fixed immediately, so you try everything.  And maybe something will work, but you won't really know which something worked because you tried everything at once. 

Autism doesn't lend itself to scientific method.  There's no time to hem and haw.  Decisions must be made.

I must always have glue.
We had a hand-wringing crisis recently regarding home ABA.  We initially started home ABA to address some behavior concerns and teach him more "productive play," since his main form of entertainment was snapping the heads off of his Disney figures.  After two years of fairly good sessions with the glorious Miss T, his therapy hours were increased.  Another therapist was added and the new guy couldn't get anything out of him.  The boy resisted, and even laughed at the new guy.  Then even the glorious Miss T couldn't get him to cooperate.  It was a tractor pull, and miserable for all of us.

I really struggled to figure out the right way forward.  I wasn't going to torture my child, but I also felt it was our job to help him as much as we could.  Why battle over getting him to play Connect Four if he didn't want to play Connect Four?  A negative experience wasn't going to encourage interactive play.  So I laid it all out for the team.  We need new goals.  The therapy has to change or we're out.  So it changed.  Apparently, the new therapist wasn't following the program.  He was replaced and the new new guy works well with the glorious Miss T, and things are calming down around here.

Everybody's happy for now...until the glorious Miss T goes on maternity leave!  And then there will be more uncertainty and angst.  Perhaps if I offer to watch her baby, she'll come back early! 

Ha.  I am certain that that is not going to happen.

Thursday, May 14, 2015

This Ain't Nothin'

A few weeks ago, I was in a community theater show called Moon Over Buffalo.  It's a comedy about a pair of aging stars, a scandal, and backstage hijinks.  Everyone associated with the production--actors, director, costumers, crew--was lovely and supportive and fun.  The audience laughed.  A good time was had by all.
I'm so glam.

This was huge for me because I was doing something for myself that I loved and hadn't done in so so long.  Theater used to be a huge part of who I was, and it had all but disappeared from my life.  I hadn't set foot on stage in 12 years.  Friends congratulated me and then asked the inevitable question:

"Weren't you nervous?"

And here's the surprising answer:  Not at all. 

I couldn't have been more surprised by my total lack of nerves.  Back in the day, I would pace frantically before the show, fighting off the urge to puke.  Once I got on stage, I'd settle down, and eventually have fun.  But beforehand?  I would be a wreck.  Not this time.  I still paced, but just to get my energy level up, not out on anxiety.  Before my first entrance, I took a breath, turned the doorknob, and walked onstage as if I belonged there.

Like it was no big deal.

Because you know what?  In the grand scheme of things, it was no big deal.  With all the crazy autism stuff I deal with, not to mention teaching snarky adolescents while being a mother to another snarky adolescent, it seemed like putting on a costume and pretending to be someone else was the easiest part of my day.  It was even a relief.

The advantage to being an autism mom is that situations that scare other people are nothing to us.  Our everyday life is so effin' hard that perceived challenges can seem easy.  Face it:  What's easier than being a special needs parent?  Um, pretty much everything.

Whenever I face something difficult, it helps to remind myself that I've already dealt with worse.  So when the Boy had a meltdown in the car the other day because he wanted ice cream and french fries and doughnuts and snow and Santa and Baby Jesus (I kid you not), I knew nothing would placate him.  But I'd seen worse--much worse--so I decided to focus on my breathing.  Breathe in for four....breathe out for four.  Breathe in for four...breathe out for four.  Resist the urge to scream.  Be all zen and crystals and patchouli.  Think about breathing and yoga and Rodney Yee in his tiny hot pants--God bless him--and resist the urge to yell.  And it worked!  I stayed calm.  Eventually, he burned himself out and we went to the park and played on the swings and all was well.

I just have to remember that I've seen worse.

Or, to quote the hobo in Slaughterhouse Five, "You think this is bad?  This ain't bad."*

*All right, if you've read the book, you know those are the hobo's last words, so I may also be making a secret ironic point here.  So it goes.