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.

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.

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.

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.

Kids Make Us Say the Darndest Effin' Things

When Big Bro was little, I used to tell my friends all the adorable, funny things he said.  They'd crack up and urge me to write them down.  "These are priceless," they'd say.  "You don't want to forget them."  He's so precious--how could I forget? I wondered.  Well, I forgot.  I know, I suck.

What has stuck with me through the years is all the crazy stuff I've said.  I don't know where it comes from, but somewhere along the line, I lost the plot.  I groan like Marge Simpson.  Often.  When Big Bro told me I'm like a cartoon mom, I yelled, "Marge Simpson is real!  And she is me!  Or she is I.  I is her.  Oh, fuck it."

My children led me to this.  And I know, as an autism mom blogger, I tend the emphasize the impact of autism on our family and on my brain.  But guess what?  Both boys have turned me into a ranting lunatic.  My NT child is just as guilty as my ASD child.

So let's play a game.  I will list some crazy-ass things I've said, and you guess who made me do it!  What it the ASD Boy, or NT Big Bro?

1. Get the whipped cream out of your pants.
2.  Minnie Mouse doesn't want to see your penis.
3.  What's the rule about light sabers in the car?
4.  PEE IN THE POTTY, NOT THE FRIDGE!
5.  Don't rub your butt on the store window.
6.  Don't rub your butt on Harry Styles.
7.  No pants, no ice cream.  These are the rules.
8.  Get your foot out of your brother's potty!
9.  Do not wipe your nose on my butt!
10.  Just because you rub something on your penis, it doesn't make it yours!
11.  Did you really just poop in your hamper?
12.  Play the piano with your fingers, not your butt.
13.  If you pee on the potty, I'll give you candy.

Are you sensing a theme?  Yes, boys are gross.  That's my theme.

Answer key:  1) Big Bro 2) The Boy 3) Big Bro 4) The Boy 5) Big Bro 6) The Boy 7) The Boy 8) Big Bro 9) The Boy 10) Big Bro--he was trying to lay claim to a chocolate bar 11) Big Bro--he just wanted to see if he could 12) The Boy 13) Both of them.

As I'm finishing this, the Boy enters the room, butt-naked except for a large blanket arranged around his shoulders in a regal fashion.  He is pushing a stroller with Mickey and Minnie in it.  

"Mommy, sit on the couch please."
"But you're not wearing pants.  I couldn't possibly sit on the couch unless you put on pants."

Add it to the list.
 

This Angry Mom Calms the Eff Down...Sort Of

When my son colors, he colors aggressively.  He presses down hard and leaves a layer of wax on the paper so thick that he practically creates his own scratch pads.  It's a sensory thing, I think.  I don't mind because it seems to help him blow off steam and it's encouraging him to use his "bird beak" grip on the crayon.  Years of OT have gotten him to this point.

The boy has crap fine motor skills.  I know this.  When we work on papers that ask him to match a picture from one side of the page to the other, he can point to the correct answer, but drawing a line from picture to picture is difficult for him.  Not only does he have to grip the pencil correctly, but he also has to cross the effin' midline.

Last night, I received a large envelope with an order form.  It said, "Look inside to see the special card design your child has created!"  Considering that his homework the other night looked like this,---------------------------------->
I was expecting some kind of Pollock-esque, action-crayoning mess.  In fact, I was looking forward to it.  I pictured his intense little face--jaw jutted out--as he savagely scribbled.

Imagine my surprise when I saw this:

Aide-made!

What the actual fuck?  I can't even begin to talk about how wrong this is.  What am I supposed to do with this?

Here's the thing, folks.  Despite the fact that I curse often, I'm not an angry person.  I don't offend easily.  It takes a lot to piss me off.  I'm a public school teacher and I know the hoops we're expected to jump through, the daily insults to our credibility and profession, and the unreasonable expectations of parents and administrators.  I'm especially sensitive to all of this, but I can't fathom any reason why a teacher might think I'd want to order greeting cards designed by a paraprofessional.

I seethed.  I raved.  I ranted in private Facebook groups about the insult of it all.  This was the artistic equivalent of a pity fuck!  And then I poured myself a glass of wine and watched a few episodes of Key & Peele until my blood pressure went down.

I prepared to write the dreaded indignant parent email.  What I actually wanted to write would've looked something like this:

     Dear Art Teacher,

     Thanks a lot for the order form.  I was truly impressed with his self-portrait.  You must be an amazing teacher to improve his drawing skills so dramatically in two short months!  You have got to be kidding me.  Do you really think I would believe this was my son's work?  Or that I'm going to order cards designed by his aide for your little fundraiser?  Yeah, I'll send them out to all our friends and family.  "Look what the boy's aide drew!  Can you believe she's only 43 years old?!  We are soooo super proud of her!"

     Maybe he didn't feel like cooperating during art class that day.  Maybe he just scribbled.  You know what?  I'm happy with a scribble!  I don't give a flying rat's ass whether or not my child can draw a self-portrait.  We have bigger fish to fry--like learning to grip a damned pencil.  Send me his real work and don't waste my time with this bullshit.  Did you feel sorry for me that my son's drawing skills aren't up to your standards?  Well, your heart may have been in the right place, but your head is up your ass.  My son needs support and understanding, not your pity.

                                                                                                             Sincerely,
                                                                                                       Mrs. Effin' A. Mom

I did not send this email.  I thought about my mother-in-law's saying, "Kill them with kindness."  Reasonable friends suggested I give the teacher a chance to explain first.  And then there's the old adage, "Honey and vinegar and shit."

So I took some deep, calming breaths and wrote a brief email asking her why I received a design that was clearly not the boy's work.  She responded with an apology and explained that this was a graphic design fundraiser and it "didn't register" with her that this was something completed by the aide and that she hopes I've seen other projects that have "included his input."  I took a deep breath, gritted my teeth and composed this response:

     Dear Art Teacher,

     Thank you for clarifying.  I would be happy to order a card containing the boy's designs.  I know he's not yet at the level of creating self-portraits.  He still struggles to hold a pencil or crayon appropriately, and I'm proud of the progress that he has made in that area.

      I would hope that anything sent home is my son's work and contains more than just his "input."  In the future, if he refuses to do the task, please write me a note.  If he simply scribbles all over the paper, please send that home.  I would rather see my boy's scribbles than work completed by an aide.

Thank you.

                                                                                                              Sincerely,
                                                                                                      Mrs. Effin' A. Mom

Sometimes I think I ought to fly off the handle more often.  Maybe these bizarre stomach pains I've been having would be relieved if I just lost my shit on people.  Then again, I'd end up feeling guilty and developing an ulcer...if I don't have one already.
  
But maybe I don't need to freak the eff out.  People generally mean well, and I understand that meaning well is not the same thing as doing well.  It comes down to this:  I know my kid and I know what he can do.  If the school ever sends me his aide's work again, I will send it back with a sticker and a comment, "Good job, Mrs. Smith!"

 I'm reminded of the old saying that Irish Diplomacy is the ability to tell a man to go to hell so that he looks forward to making the trip.  

Or as my husband explained, "You're good at telling people to fuck off, but you do it classy-like."

Thanks, hon.

The Cupcake Crisis and Other Non-Problems

It's October.  Time to go apple-picking!  (Nope.)  Put up the scarecrow!  (Can't find it.)  Carve a pumpkin!  (Probably not.)

I let a lot slide this month because I'm gearing myself for the one-two punch of Halloween and the boy's birthday.  I make a big deal.  I have to.  There are only five kids in his class, and if we don't host a party, he might not get to go to one all year.  It's a moral imperative.

I'm usually all jazzed about this, but this year, I'm a little worried.  We're in a theme rut, folks.  For the past two years, the boy has worn a homemade Perry costume for Halloween and has had Phineas and Ferb birthday parties.  It's the only thing he likes.


I made the Perry costume out of a t-shirt, hat, and long underwear.  For the second Halloween, I just bought bigger long underwear.

The first Phineas and Ferb birthday party featured cupcakes decorated with little plastic character rings.  For the second party, I made these Perry cupcakes.  I think I knocked it out of the park, if I do say so myself.  And now I don't know what else to do.  I'm not a Pinterest person.  I had an account but I think it got hacked because there are a million pins about how to firm up your booty.  I don't care about my booty; it's behind me and I can't see it.  I don't even have one.  I'm serious.  If you look at me sideways, I go straight down.  I have legs and a back.

But I digress.

Do I just make the same cupcakes again?  It's not like I'm trying to impress anyone but my kid.  The other autism moms are fantastic and they understand better than anyone that a kid can get stuck on a theme.  Dare I attempt a different character?  He likes Nemo, but only wants to watch the scene with the seagulls.  He likes Woody and Jessie, but has never even seen Toy Story, nor does he care to.  He just wants to pop the heads off the figures.

What's a mom to do?

I know these are not real problems.  I know this.  Believe me.  We have enough real problems that I know the difference.

But the real problems are so much harder, if not impossible.  They are too real.  We have doctor's appointments and MRIs and medication and behavior plans that rarely work.  We have family members who refuse to have a relationship with our boy and therefore no longer have a relationship with us.  We have financial worries--both short-term and long-term.  What's going to happen to him when we die?  Why isn't there any music therapy within an hour of our house? And why the eff can't I find a gluten-free bakery that does children's cakes?

There is so much I can't control, but I refuse to sit on my nonexistent ass and do nothing.  So I will obsess on the cupcakes and throw my boy a great birthday party.

And yeah, probably buy even bigger long underwear for the Perry costume.