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 paradox...now 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.

Wednesday, January 21, 2015

Mother's Little Helper

What a draaaaag it is getting o-old!

This song pops into my head every time I wash the makeup off my face.  I'm currently battling zits and wrinkles--how unfair is that?

And then I think, "Fuck you, Mick, you smug little shit.  If you were my kid, I'd pill up, too."

The song resonates with me and pisses me off at the same time.  So much of motherhood--and NOBODY wants to talk about this--is a drag.  It's boring.  All the stuff we have to do--cooking and cleaning and signing forms and checking homework--it's important.  I know it's important.  But it's not intellectually stimulating.  It's a drag.

And though she's not really ill, there's a little yellow pill
She goes running for the shelter of a mother's little helper

And it helps her on her way, gets her through her busy day

Despite the condescending tone, I get why the mom in the song wants her little yellow pill.  You do all this boring shit for the people you love, and they don't appreciate it.  How do you deal?  I'll admit that once or twice I've been guilty of HUI--housework under the influence.  With a nice little buzz on, the work I was doing seemed relevant.  It was an act of love rather than thankless drudgery.  I'm washing their socks because I love them and I want their feet to be warm.  How nice for them to have clean socks that actually match.  Underwear, too!  I'm such a good mom--hic!

But sometimes the problems go beyond laundry being a drag.  Sometimes things get darker and more panicky.  Sometimes a glass of wine or laughing at my problems doesn't do it anymore.  Sometimes anxiety and depression are here, in my house, and getting in my way.

Things have gotten worse than having to resort to instant cake and frozen steak.

A while back, my friend Mama Fry wrote about the time she admitted to herself that she was experiencing burnout and needed antidepressants.  The piece, called Paper Gowns and Prozac, is brave as hell and got me really thinking about it.  And thinking about it.  And telling myself that I didn't have time.  And telling myself that things would get better if only...

If you haven't read it, please do.  The first time I read it, I nodded my head.  I reread it today and cried.

That piece was published in October.  I finally made the call today.