Just The Way You Are

I started writing this post yesterday while I waited for Connor at his social skills playgroup.  My intention was to finish it that evening.  But things went very, very wrong, and I.  Lost.  My.  Shit.

It started with theft.  Hubs picked up Connor from school, and he had a mini skateboard toy that wasn’t his.  His behavior did not earn him any prizes, so he snatched someone else’s.  Nice.  We’ll be doing the walk of shame in the morning as I have him confess to the teacher and return it.

After work, I took him to his playgroup.  At the end of playgroup, the kids all come out to the waiting area.  Connor made a beeline for the ottoman where toys are stored for kids that are waiting.  He threw it open and started digging.  I said, “hey kiddo, we’ve got to get going so we can have dinner.”

Nothing.  Completely ignored.  I moved next to him and tried again.  “Connor, we don’t have time to play, we’ve got to go.”

He continues rummaging through the toys. 

So now I take hold of his arm, firmly but gently, to guide him away from the ottoman, per ABA.  He starts flailing and pulls his arm away, then runs down the hallway.  Why are these parents just staring at me?  Assholes.

I stand where he can see me, and I point to the ottoman (so he can put the toys away and close it).  He comes back, pissed, and puts the toys in there and slams the lid down.  Out we go to the car.

As I’m buckling up, he pulls something from the back of his pants and says, “look at this.”  It’s a small toy car. 

“Where did that come from?”  He points toward the office.  Fuck!

Back in we go so he can return it, and the behavior therapist reminds him that the toys stay there.  Fine.  Great.  Back to the car.  My nerves are wearing thin at this point.

On the way home I need to stop at Walgreens.  I tell Connor this, and ask if he can have good behavior in the store while I get only one thing.  He assures me that he can.  And I believed him.  My bad.

I manage to get the item and navigate to the register.  He’s doing just fine.  As I begin using the pin pad, I see his hand up on the counter grabbing hold of the scanner doo-hickey.  It has those cool, red laser lights, so I don’t blame him.  I calmly tell him, “no, we can’t touch those things, we can get in trouble.” 

I repeat it again.  He pulls his hand back.  As I resume my transaction, his hand shoots in front of me and starts pushing buttons on the pin pad.  So I take hold of his hand, and continue my transaction with my left hand.

He proceeds to pull and flail and freak out.  I hold on tightly.  Fuck, now the Walgreens people are staring at me.  Kill me.

I march him out to the car, open the door, and get him inside.  As I get in the driver’s seat, I’m abruptly hit twice from the back.  Per ABA, I am not supposed to give any attention for this.

But people, this is when it happens.  I.  Lose.  My.  Shit.

Bad.

As I buckle up and start the car, I begin bawling my fool head off.  For the life of me, I don’t know how I drove home, because my crying was hysterical.  Capone was silent in the backseat.  And all I could think in my head is nothing is working, the therapies, the playgroup, nothing.  Nothing we do is making things better.  And now he’s stealing.  He’s going to end up in jail when he’s older if this is how things are at five.

I tell you, I was in a bad place.  Home and into the house.  All my poor hubby sees is me crying and babbling like a lunatic.  I go directly to my room, into the walk-in closet, and collapse in a heap on the floor. 

Hubby fed the boy, got him in the shower, and ready for bed…with no story.  Take that!!  Of course, Connor kept saying he was sorry, and he would never hit me again.  Uh huh, heard that before.

But I’m better today.  Really, I swear.  Still stressed and worried, but back in the fight.  There’s really no choice, although a three-day “rest” at the asylum sounds strangely relaxing…a nice Thorazine buzz, a little nappy-nap, some mashed potatoes and jello for dinner.

Whoa, I was daydreaming again.  Sorry.

And then there’s this.  This, that I started writing while he was still in the playgroup.  This, that happened on the way to the playgroup.

Connor’s favorite song currently is Just the Way You Are, by Bruno Mars.  When it comes on the radio in the car, he sings his heart out.  The irony of it is not lost on me.

I have that song on my Ipod and Droid.  Even though I’m sick to death of  it, I listen to it often.  When I’m feeling down, when progress feels painfully slow, or worse, non-existent, I listen.

Today he threw his pants away in the bathroom at school.  Since stopping the stimulant, he is having a lot of accidents.  Husband was perturbed about the pants because, let’s face it, money doesn’t grow on trees.    But I knew why he did it, despite the fact he said he did it by accident and “forgot.”  He was embarrassed.

I didn’t make a big deal, just asked him to try to fold them up and stuff them in his backpack next time.

Bruno fucking Mars was no help to me in that closet.  Strangely, it was a different song that cheered me the next day.  Driving home from work, the song “Ride Wit Me”, by Nelly came on, and my ten-year-old Saturn was bumpin’.  What a gi-normous dork I am.

I’m not much of a rap fan (Pink is more my speed), but this song picks me up.  Go ahead, listen to it the next time you’re having a bad day.  And when you’re “smokin an L in the back of the benzie”, you might see me there too.  (it’s just a metaphor, people)

Yes, yes Nelly I DO want to come and take a ride wit you.

Favorite Posts Over at Blog Gems

It’s Blog Gems time, over at The King and Eye!  The subject is favorite posts, so you can find one of mine over there.

Be sure to check out some of the other great posts on the list.

This Is Me Meme…Check Me Out

Crimony, I’ve been waiting for someone to throw me a rope.  You may have noticed I haven’t written in a few days because I’M ALL OUT OF THINGS TO SAY.

I know, I can’t believe it either, because I always have something to yammer about.  But this week, not so much.

Thank Jehovah that Lizbeth, over at Four Sea Stars, finally took mercy on me.  I like her so much because she’s wicked funny, sometimes uses swear words, and can smell a blog slacker from a mile away.  She’s crackin’ the whip on my ass, and tagged me in a meme.

What’s a meme, you ask?  Well, it’s this thing…where you do something and you tag someone else to do it.  I think.  I don’t really fucking know, I’m just happy to have something to write about.

Here’s Connor’s artistic interpretation of “Mommy.”  Notice how well he’s captured my long flowing hair.  It’s sort of a cross between being scared witless, and being a troll doll.  I’m just glad there’s a smile on my face, and not a freeze-frame of me screaming at the crazy dingo dog.  It’s also a little bit Picasso-esque; you’ll notice my nose is below my mouth.  We like to think outside the box over here.

My eyes really are green!

I guess this meme was started by Tara, over at Sticky Fingers.  The rules are:

• Ask your child to draw a picture of you. It doesn’t matter how old they are.
• Post the picture on your blog. Go on…. be brave!
• Call it the ‘This Is Me Meme’ .
• Pop over to Tara’s post to add it to her linky.
• Then tag some others.

Since I’m dying to see how someone else would draw him, I’m tagging Big Daddy Autism.  I think Griffin might give Big Daddy a run for his money when it comes to character representation, although I do love that Big Daddy’s not shy about his narcissism!

And,  let’s see….Spectrummymummy!  She calls one of her kids “Pudding”, and I really like pudding (chocolate of course), and I really like “accents” (she’s English, married to an American, and moving to South Africa – love it!).  She might not like me much after this, but c’est la vie!

So there it is, my very first meme is complete.  Now I can start worrying about tomorrow.

Vote for Pedro!!!

Good Ideas Gone Wrong

“If you’re stupid and you know it, clap your hands!”

 

(clap clap)

 

I saw one of those sensor-activated soap dispensers at CVS.  It was on sale, and if you buy it, you get, like, a gazillion CVS bonus bucks back.

I live for bonus bucks.

I smugly took it home.  THIS was just the item I was looking for.

I calculate that in the last 4 1/2 years, I have coached the boy on the proper amount of soap to be used for hand washing at least 3,284 times.  Conservatively.

This will fix his wagon.  Because it’s so EASY.  Put your dirty little paw under the nozzle, and the sensor spits out the right amount of soap.

This is not my dispenser. This one is even cooler than mine.

 

Apparently, this is big fucking fun for an almost-six-year-old.

The slimy soap trail was all over the counter.  In the sink.  On the towel.

Of course it was.  Duh.

“If you’re stupid and you know it, clap your hands!”

 

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Things That Aren’t Funny

Today, against my better judgment, I had a debate with a friend about the homeless population.

That’s usually not a good idea if you want to keep your friends, but sometimes I’m impulsive.  Go figure.

Her opinions were not unusual, and are probably shared by the majority of Americans. 

“I work two jobs, why should I give my money to someone that is capable of getting a job of their own?”

“If I give them money, how do I know they won’t use it for drugs or alcohol?”

“Giving them money will only encourage them to not get a job, and live off of handouts.”

I guess I can’t imagine a person choosing to live on the street, and stand out in the cold and heat begging strangers for money, day after day.  It seems like that would be much harder than working at the Home Depot.

And people with addictions…I suppose I subscribe to the disease model of addiction.  At some point, it stops being a choice.  And I have to wonder, what kind of abuse, neglect, or damaging life history does someone have to drive them to addiction that leaves them homeless?

Mostly I think, who am I to judge others?

Everyone who meets my son assumes he is a neurotypical child.  He doesn’t look like he has a disability.  There’s no wheelchair, vacant stare, or obvious stimming behavior.  But it’s there.

It’s there when he screams because the sound of the hairdryer is overwhelming.

It’s there when he becomes agitated that we have used an alternate name for something, like calling a motorcycle a “chopper.”  He becomes more and more agitated as he demands that we “call it a motorcycle, don’t call it a chopper.  It’s not a chopper, it’s a motorcycle.”

Someday my husband and I will be gone.  We don’t have much family, and Connor will need to make his own way in life.  What if his disability keeps him from being a functional adult?  What if he can’t hold down a job, and meet life’s responsibilities?

What if his stubbornness, independence and refusal to follow rules prevents him from being able to accept help, by living in a group home, or receiving assisted living?

What if he ends up on the street?

I didn’t tell my friend this, but these are my worst fears, the thoughts that keep me up at night.  

He could be the one that causes someone to say, “he’s healthy, there’s no reason he can’t get a job.”

I don’t know what other parents do with this fear.  Do they push it out of their minds, in the interest of moving forward?  Do they have enough family that they don’t worry about the worst case scenario?

But the bigger question, larger than my fear for my child, is what has happened to human compassion? 
What has happened to love and kindness for our fellow man?

And what will I tell my son when he asks me about homeless people?

Coping Strategies

For months now, Disability Scoop has been running an article about Autism Moms having stress that is similar to that of combat soldiers.  Depressing!  Every time I see it I wish they would take it down.  Not that it’s a bad article.  I just don’t need the reminder about my stress level.  It’s like saying, “Hey, you’re tall!!”  Or, “Wow, you’re incredibly gorgeous.”  People don’t need to be reminded of the obvious.

Funny that they don’t mention anything about Dads and stress.  They must handle stress differently.  Maybe they de-stress by expressing themselves through the artful expression of cartooning.

Anyway, as a public service, I thought I would list nine coping strategies for autism moms.  Why only nine?  I was way too stressed to think of one more.

9.  Bad Girl’s Club – A bunch of young women, living in a house in the Hollywood Hills, drinking, clubbing, and fighting like animals.  It’s like watching a train wreck.  Pass the popcorn!

8.  Angelina Jolie - Thinking about a rich, (almost) anorexic starlet adopting kids from all over the planet, having a small herd of her own, and the inevitable ways she will fuck them up makes me feel a lot better about my life.  Someday one of them is bound to find the vial of Billy Bob’s blood, in a drawer tucked beneath her undies.  ‘Splain that, Lucy.

7.  Angry Birds – Nothing breaks the tension like flinging birds into buildings.  Virtual birds.  Even my son appreciates the gift of the birds.

6.  All things natural - Gluten-free, casein-free, sugar-free, no red dyes, low salicylate, probiotics, fish oil, magnesium…if you’re baking gluten-free cupcakes, with sugar-free frosting, and quinoa is your favorite side item, then you are channeling your energy (and stress) into “all things natural.”  Good for you!!  Of course, you probably don’t have a lot of dinner guests….

5.  Real Housewives of (insert city of preference here) –

Super-rich, enviable socialites that show off their homes and lifestyles, only to end the season by cat-fighting over ridiculous, inconsequential things…it’s like a little gift from heaven that I get to watch them and actually think, “boy, I’m glad that’s not my life.”

4.  John Stewart – A spoonful of sugar helps the medicine go down.  John is that sugar, world news is the medicine.  ‘Nuff said.

3.  Disney – Planning a trip to Disneyland or Disney World, acquiring the coveted Fast Pass, and using the shit out of it.  Good times.  You can read the chronicle of one autism mom’s Fast Pass adventure by clicking here.

2.  Drinking – Well duh!

1.  Blogging! - Yeah baby!  There’s a whole squadron of us sharing the humor, sadness, injustices, challenges, and adventure of this life raising a child with autism.  You don’t even have to be a writer.  Find yourself a site and start pouring your thoughts from your head to the computer.  The best part is the bloggy friendships you make along the way, and knowing you’re not in this alone!

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Rocks and Hard Places

I prefer to not talk about medication, because it’s a polarizing topic.  Instead I’ve written a “story”, about a family with a boy that takes medication.

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Little Man was three, and he had so much energy that he had already been kicked out of two daycares.  Mommy and daddy were worried, and frazzled.  They knew something was different about him.  And they were trying to hold down jobs, which was becoming increasingly difficult when nobody could handle their child.  So they made an appointment with The Doctor.

The Doctor knew right away that Little Man had ADHD.  He was like Tigger the Tiger, always bouncing here and there, distracted by butterflies and ants and sunshine and air.  The Doctor started Little Man on a medicine to help him.  The medicine is a stimulant.  Mommy and Daddy were nervous, but wanted desperately to help Little Man.

They're bouncy, bouncy, bouncy, bouncy, fun, fun, fun, fun, fun!

For a while, Little Man did much better on the medication.  But after a while, it seemed less and less effective.  It was changed to an extended release version, designed to last 8-10 hours.

Because of Little Man’s metabolism, it lasted 3-4 hours.  The Doctor prescribed it twice a day, and soon Little Man was at the maximum dosage. 

Stimulants tend to affect a person’s sleep, and soon Little Man was up every night, waking up Mommy and Daddy at 2am, 3am, 4am.  When people are sleep deprived, it begins to take a toll on their health.  Mommy and Daddy were not doing well, and they talked to The Doctor about it.  He added a medication at nighttime, to help Little Man sleep.

For a while, things went well.  Everyone was sleeping again.  But time passed, and Little Man became more and more irritable.  Stimulants can have this effect.  The Doctor added a mood stabilizer medication, to counter the effects from the stimulant.  He also added a non-stimulant ADHD medication, because the stimulant was losing its effect.

Now Little Man is five-years-old and on four medications.  He was still very irritable, and was now having episodes of aggression.  Mommy and Daddy walked on eggshells around Little Man, and Mommy began to fear him because he is a very strong child.  Mommy began to worry that Little Man would have to be hospitalized.  Things were very dark.

Then Friday night, as Mommy sat crying again, she decided that the medications would stop the next day.  They would have a medication free weekend.

Mommy was very relieved to see that Little Man was back to his bouncy, happy self.  There was no irritability and no aggression.  Even when he was sent for timeout for not listening, he did not yell or slam doors.  There was a lot of laughter over the weekend, and Little Man was very, very affectionate.  Mommy was so happy to see that her child was not out-of-control, and she stopped thinking about hospitals.

Little Man slept well all weekend.  He even agreed to read some words for Mommy, which he does not like to do.  It took twice as long to get anything done, but they were all much happier.

But they did worry about school.  Little Man was as distracted as ever.  Mommy and Daddy stayed up late, talking about medication.  They decided to give him ONLY the non-stimulant medication on Monday, and hope for the best.  They would consult with The Doctor (who they were starting to lose faith in), and see how things went at school.

Mommy and Daddy knew the school would not be happy, but they didn’t care.  They had been travelling this dark and lonely road all by themselves, with no help.  The school was not there to help them when Little Man was breaking things and screaming.  Even their family and friends did not understand. 

They were just glad to have their happy, bouncy child back.  And maybe the rest would just fall into place, and they would find a happy ending.

Circle of Life

You’re not going to believe this, but last night we had THE DEATH CONVERSATION.

I know.  He’s only 5.  And it was really, really, really traumatizing…for me.

But it’s my fault to begin with.  I came up with a “plan” at bedtime to tell Connor that if he wants a bedtime story, first he needs to read 5 words.  Hey, don’t judge.  I’m trying everything I can here to get him to read.

So he does it, mostly willingly.  And I decide to ask him, “Why don’t you want to learn to read?” 

He says, “because I just want you and daddy to read to me forever.”  Yeah, I know.  That’s sweet, right?  But this big plan of his is standing in his way of learning.

So I say, “well you know, we won’t be here forever.  That’s why you need to learn to read and write yourself.”  As soon as the words left my mouth I thought, “FUCK, FUCK, FUCK!!  What the FUCK did I just do?”

“Why won’t you be here forever?”

 

FUCK!!

“Well, because you will grow up and have your own house someday.”  Okay, that’s a good start, right?

 

“And someday mommy and daddy will be gone.”  Wait, why did I fucking say that?  I mean, what was I thinking?  Why didn’t I just leave well enough alone?

 

“Why won’t you be here, where will you be?”

“Well honey, you know someday everybody dies.  We all grow up and grow old, and sooner or later it’s our time to die.  It’s the circle of life.”  Yes, I went straight for the Lion King, you bet your butt I did.  And I was prepared to sing Circle of Life, if need be.

 

“But I don’t want you to die.  Am I going to die?”  FUCK!

“Someday everyone dies, honey.  Usually it’s when they are very old, so please don’t worry about it.  I’m just telling you that you need to learn to read and write, so you can grow up and read to yourself, and your kids if you have any.” 

“Okay.  Do kids die?”  Are you fucking kidding me??  I am trying my damnedest not to traumatize this child, and it’s like he’s trying to make me do it! 

 

And hubby finally, finally came through on one of those icky conversations that I always get stuck having.  He said, “yes, sometimes they do, but not usually.  You don’t have anything to worry about.”

And Connor said, “oh, okay.  Can we read now?”

But I’m hoping that this new nugget of information isn’t just sitting in his head, festering, and waiting to manifest as some new anxiety issue.  It sure has given me anxiety.  More wine, please!

 

And can you believe, after all the bullets I’ve taken for hubby with the penis/vagina/toilet/poop/testicle conversations, that he got off that easily?  From now on, I think the mantra will be “Ask your father!” 

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Attention: Former Representative, Martin Harty

Dear (Former) Representative Harty:

As the parent of a child with special needs, I do my best to keep up with disability news.  That is to say, when I’m not working full-time, dealing with school issues, attending therapy sessions 6 days each week, and dealing with monumental meltdowns involving aggression, I try to squeeze in some reading about disability news updates.

Guess what?  You’re in the news.  I’m sure you remember why.  It’s because you told the manager of a mental health program that “the world is too populated” with “too many defective people.”   You also went on to say that “I wish we had a Siberia so we could ship them all off to freeze to death and die and clean up the population.” 

 

Of course you don’t want people to jump to conclusions.  After all, you’re a reasonable man.  It’s not like you were suggesting all people be shipped away.  That would just be plain crazy.  Luckily you clarified your criteria by stating “you know the mentally ill, the retarded, people with physical disabilities and drug addictions – the defective people society would be better off without.”

 

But later you said you were just joking.  Well I, for one, thought it was hilarious.  Really.  Absolutely hilarious for a state representative, in a position of power, to make a statement that is nothing short of barbaric.  It’s a real chuckle for me to think that there are politicians in this country that are of the mindset that my precious son, who did not ask to be born with a disability, should be sent off to die.  Yes (Former) Representative Harty, I am laughing up a storm.

And after such a terrible backlash about your comments, you resigned.  At 91 years old, I suppose you’ve earned yourself a rest.  Perhaps it’s time for a new politician to step in and pick up the torch of hatred.  The truth is, there’s always another one. 

As a parent, I will never again have to lament over under-funded disability programs.  I will never need to wonder why disability services are always being cut.  Thanks to you, I think I know.

But don’t rest too easily in your retirement.  Know that parents like me will continue advocating, voting, working, and fighting for our children.  Perhaps hatred like yours will never be eradicated completely, but neither will our determination, resolve, and love for our children.

And you better hope, you SICK FUCK, that your tired, old, hateful ass isn’t on the next plane, boat or hot air balloon to Siberia.

Because I would vote for that.

Sincerely,

Parent of a Special Needs Child

Your Worst Fucking Nightmare

My Eyes, My Eyes!!

You know how we’ve had some “challenges” instilling the love of reading into Connor?  No?  Then click here and get caught up.

Back?  Okay.  So ever since we started pointing to words and making Connor say them, storytime has gone straight to hell.  But this week he brought home a new library book from school.  It’s about a chameleon.  And I hate it.  Really.  It’s disgusting.  Let me show you why.

That thing is eating a caterpillar. NOT a book for mommies.

I hate it because it has real pictures, not cutesy cartoon pictures.  See, these are not pictures I want to look at.  Animals and people, yes.  Bridges and cranes and bulldozers, okay.  Amphibians and insects, not so much.  But boys like things like this, and any book my boy likes is a good book.  Even if it’s totally gross.

The chameleon has friends in this book.

Friends don't sting friends. Someone needs a time out.

 

We’ve read this book every night since he brought it home.  But last night, on the very first page, Connor puts his hand up and says,  “no, I want to read it.”

And in my head, there’s a freakin’ party going on.  Yeah, baby!

He read almost every page of the book.  Granted, we’ve read the damn thing ten times already, and he’s memorized it.  But I was there for every reading, and I don’t have it memorized, so I’m kind of impressed.  And when he read, he ran his finger along under each word.  Bonus!

So while I find the book visually offensive, I’m just going to suck it up.  But I’m really, really hoping the school library doesn’t have any books about cockroaches.

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P.S.  Psssst!  Click the chick, I won’t tell anyone.  It’s our little secret.