Frustrated. No, not that kind of frustrated.

UGH! Frustrated. Just frustrated.

But I’m not supposed to say that, am I? I mean, expressing frustration about my child is verboten in autism land. Whatever, call Mayor McCheese to give me an attitude ticket then.

I suppose I should expect this. The beginning of the school year is always a challenge until we get the routine down. Still, after coming off the high of a fantastic summer, I foolishly thought we’d avoid the usual bumps in the road.

Every day we get the same report from the after-school program: playing around inappropriately in the bathroom, repeatedly jumping off the stage in the cafeteria, being mean or inappropriate when playing with others. And every year I talk about building up and rewarding the desired behavior; using a token or ticket system, praising desired behavior, etc.

Still. How many more years will we be working on not crawling under bathroom stalls, or standing completely in the urinal (side note: EWW!). It’s not that he doesn’t know the rules. He knows them very well and can recite them. He’s just so IMPULSIVE. And after school, meds have worn off. Cue intense bouts of tomfoolery and shenanigans.

The frustrating part in him knowing the rules and routines is that you begin to feel like he’s purposely just giving the rules the finger. Sometimes I’m downright positive he is doing that. And it’s really hard not to sympathize with the staff for being frustrated. By third grade, kids should not be crawling on the skeevy bathroom floor.

What’s that you say? Maybe the program is too much for him? Maybe we should make other arrangements? Easier said than done when you work 8-5 and have a mandatory 8 hours of OT every week. This process would be so much less stressful if I didn’t have to hold down a job, but I do. So I just better keep on balancing this high-wire act over here.

This post? Not entertaining AT ALL. Sorry about that. Here, look at this picture of cats. People seem to like cats.

courtesy of iwastesomuchtime.com

I guess you see now why I don’t like cats.

It’s wine time, people. Have a happy, shiny, feel-good something something whatever.

Focusing on Smudges and Missing the Big Picture

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Getting hung up on the details and missing the big picture* is a recurring theme at our house. From my understanding of Asperger’s, it is a fairly common occurrence to get lost in those details.

When Connor does his nightly reading, he often flips from the cover to an inside page, several times, to compare the cover photo to an inside photo. He’s fixated on seeing if the pictures are an exact match, or if there is some detail missing. He will flip through the book, counting the pages, instead of just reading. Sometimes he will count the number of letters in words. Twenty minutes of reading is sometimes an exercise in how much patience I can muster after a very long day.

And always I remind him, “you’re getting lost in the little, unimportant details. The big picture is in reading and understanding the story.”

Sometimes our conversations are the same way. He may dial in on a particular word I’ve used, and soon we’re off on a tangent that’s completely unrelated to the original topic.

It’s a slow, arduous process. But it’s a challenge that we continue to work on daily, because I know this will be the cause of much frustration and misunderstanding in his life if he doesn’t learn how to step back and see the larger picture. I worry that he will struggle as an adult if he can’t get past reading too much into little details, and completely missing the larger point.

With any luck, persistence, time, and maturity will work some magic. I would hate to see him miss out on seeing a beautiful masterpiece because he was too busy zeroing in on the individual smudges.

*Edit:  the clinical term is called central coherence (thanks Sharon!).

Equality and All That Goes With It

When we talk about autism, we also talk a lot about equality.  We want our children to have equal rights and opportunities.  We want them to get an education that is equal to their peers, by receiving support and accommodations.

Even though my son is categorized as “high functioning,” he will need the tools and skills to make his way in society when he is grown.  His disability is invisible in that it is not easily distinguishable.  It’s my job to prepare him for the world, and teach him social rules.

Equality is a two-way street.  Of course we want him to have the same opportunities as anyone else.  But we also have to expect him to understand basic rules of social conduct.  If he is truly to be “equal” then he must also be prepared to be called out for his actions.  Just like the rest of us.

Just like the rest of us.

Social skills are important, and we’ve been working on them for a long time now.  We work on them because he won’t be wearing a sign around his neck that says, “I have autism, please excuse me when I’m inappropriate.”

Some social concepts that we’ve been working on:

1.  If you bully someone (and it IS possible for someone with autism to bully others), they will eventually stand up to you.  Or their friends will.

2.  If you call someone names, they will usually respond in kind.

3.  If you put your hands on someone, eventually they might get mad enough to hit you back.  And if you do this when you’re grown, you can get in trouble with the police.

4.  You are responsible for your words and actions.

5.  Your words and actions affect other people.

6.  Your challenges don’t excuse your behavior.  That’s why we practice coping skills.

7.  You can’t call someone else out for doing what you have done yourself.  If you shoot a Nerf dart at me, I will shoot one back.  You don’t get to have a hissy fit when it happens, otherwise you shouldn’t start the play-war to begin with.

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When he is grown, people will presume competence.  That’s important because we don’t want people assuming that, because someone is different, because they have special needs, that they are inherently unable to be an equal, contributing member of society.  To presume competence means that someone will be treated as an equal, with equal expectations.  To lower or alter one’s expectations of someone because of autism is not treating them equally.  It’s one thing to provide accommodations to someone so they can complete a task, but one cannot expect accommodations for social skills and behavior, because the golden rule applies to us all.

But we worry.  We worry that he will want to hide behind his label and use it as an excuse for not learning or being accountable.  Temple Grandin didn’t achieve all that she has by waiting for someone to accommodate her.  That’s why we work hard at teaching these concepts, and we teach them in many different ways so he can grasp them.

Yes, it is possible to be autistic and a jerk at the same time.  But we will work our butts off to try and make sure that’s not our son’s outcome.

Let’s face it, there’s no shortage of jerks.  The world doesn’t need one more.

Places the Vine Can’t Reach

Sometimes I don’t want to talk about autism.

It’s not because I’m angry or sad. It’s just that…sometimes it seems that autism is like a creeping vine, silently inching along and winding itself around everything it touches, altering things that were.

It’s not good or bad, nor right or wrong. It just is.

Every school meeting; every play date; every meal time; every homework battle; every post I read or write.

It was unexpected when, on Saturday, a trip to the emergency room was a rather sedate and uncomplicated affair. Except for the fact that Connor had broken his arm – his first broken bone, falling while riding his scooter in front of the house. He had only cried for the first few minutes after falling. We put ice on his arm and calmed him down. After a while, we saw that the arm was bulging a bit on the side, and decided we needed an x-ray.

Of course we brought the iPad. This is simply a given. The ER was blessedly empty, and he waited patiently while he was examined, inquiring about when he would get his x-ray. When they wheeled the x-ray machine over to his side, he calmly put the iPad aside and laid his arm on the glass platform just as he was asked to do. He was disappointed he couldn’t see the image immediately, but was amenable to resuming his game when assured he would see the x-ray shortly.

He looked intently at the scan as the doctor told us he had broken both bones, a few inches above the wrist. When they applied the temporary half-cast, he asked pertinent questions about how he would bathe, how long he would wear it, and how long it would take for the bone to heal.

We left an hour later, with instructions to follow-up with the orthopedist on Monday. As we drove home, I realized that the entire ordeal had felt so routine. Ordinary. No discussions of behavior, no perseverations or refusals to comply. It was like finding a space where the vine hadn’t yet reached.

The orthopedist appointment was much the same. When it came time for the doctor to straighten the bone, there were many tears. But there was no screaming, no trying to get away. I held onto his other arm and stroked his hair, telling him how proud I was of him, that he was very brave, and promising ice cream.

The doctor, no shirker at handling bones or people, came back with a purple popsicle that they must keep stocked for just such an occasion. Connor held it out to me and said, “here mom, you take it. You deserve it for taking care of me and bringing me to the doctor.”

But I refused. It was freeing to spend this time away from thinking and worrying and planning and exploring the A word, and I just wanted one more moment…seeing my little boy enjoy a messy, dripping popsicle.

These moments of connection, of presence, you just don’t know where they’ll crop up.

It might just be in the emergency room, because of a broken arm, out of the vine’s reach.

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Cold Cereal, Cake, and the Layers of Functional Communication

I’m thankful each day that Connor is able to say “I love you, mommy”.  I never take that for granted because I know that there are so many others that would give anything to hear those words.  Or to hear any words.

For all intents and purposes, Connor has functional communication.  He can ask for something he wants, answer questions with varying degrees of accuracy, and even tell jokes.  God, the jokes…  His first “real” joke just happened this weekend.  I say “real” because it was the first one that totally made sense, rather than the usual “Knock knock.  Who’s there?  Fart.  Fart who?  I just farted in your face, bwahahahaha!”  We were playing air hockey, and he sunk the puck in my goal and said, “Oh yeah, Santa went DOOOOWN the chimney!  How you like me now?”

I laughed my ass off.  It made sense, it was a play on words that fit with what just happened.  It was perfect.

But that doesn’t mean that he has mastered functional communication.  Because he is highly verbal and because he is “high functioning”, people don’t often understand or realize that his communication is still impaired, especially at school.

According to the American Speech-Language-Hearing Association, functional communication is defined as follows:

Functional communication skills are forms of behavior that express needs, wants, feelings, and preferences that others can understand. When individuals learn functional communication skills, they are able to express themselves without resorting to problem behavior or experiencing communication breakdown.

It’s a broad definition.  So although someone may seem as though they can communicate quite well, the real test is whether they can “express themselves without resorting to problem behavior…”

The reason I have functional communication on my mind has everything to do with cereal.

Yes.  Cereal.

See, the other morning I called Connor out to breakfast.  As I made my way toward the shower, he started yelling “but I don’t WANT cereal!  Why do I have to have CEREAL!?”

“Great, more whining and complaining,” I thought.

“But you like Oatmeal Squares, you eat it all the time,” I said.

His response left me thinking about the damn cereal all day.  He said, “the cold milk gives me goosebumps.”

He’s never said that before.  It made sense to me now.  It was a cold day, and having cold milk in his cereal made him feel more cold.  It dysregulated him.  Normally, he would have just whined about not wanting it, and asked for other things.  And normally I would have assumed he was being controlling and difficult.

Because he added the sentence about the cold milk, his statement about not wanting cereal became functional.

This was a breakthrough, and I complimented him on explaining the problem to me.  Since we were running late, I asked if he could manage the cereal this one time, and the next day I would make sure he had something warm to eat.  He happily agreed.  Because of that extra piece of communication, we were able to negotiate and work out a solution together.

All that day I thought about the cereal, and wondered how many times I’d dismissed his behavior as “controlling” or “whiny”, when it’s entirely possible that he wasn’t able to communicate effectively.

I remembered what I used to know, once upon a time.  Functional communication involves many layers and subtleties that are hard for our kids to master.  It means we have to ask more questions, whenever possible.  It means that when our kids are whining or acting up, we should assume there is something going on that they haven’t been able to communicate to us.

It helps to think of the layers of functional communication by comparing two statements.  Consider the first statement below:

“I like the cake, it’s good.”

In contrast, here’s another description of cake, by Maria del Mar Sacasa, at Serious Eats:

“…softened butter is whipped with an egg yolk and confectioners’ sugar, then spread generously between the layers. The result: a light, crisp, chewy meringue with inexplicably creamy, lightly sweetened swirls of butter.”

The first statement conveys the very basics, while the second statement offers a detailed description that leaves the mouth watering.  It is the details that our kids struggle with, that often leads to tantrums, full-blown meltdowns, or simple misunderstandings.

From now on, whenever I encounter whining or tantrums, I will remember the cold cereal.  I will try my hardest to help facilitate more in-depth communication, and stop chalking it up to just “bad behavior.”  I will help him to describe the cake in all its wondrous detail.

And tomorrow, we will have pancakes for breakfast.

Blog Book Tour – Spaghetti is Not a Finger Food

If you’ve ever wondered how someone with Asperger’s views the world, or how their thought process works, then you should get a copy of Spaghetti is Not a Finger Food. Written by Jodi Carmichael and published by Little Pickle Press, the book explores school and home life for Connor, a third grader.

Following is a description from their press sheet:

Follow a quirky day in the life of Connor, a brilliant student with an equally high talent for second-guessing the rules. As both entertainment and an accessible educational tool to help teach students about Asperger’s Syndrome, the book is a welcome addition to schools and libraries alike.

The first thing I noticed about the book is the delightful illustrations throughout, done by Sarah Ackerley. They’re expressive, clean and colorful, but not distracting from the story.

I sat down at the computer with my Connor and we started reading the story together. Initially, I felt like the story moved too quickly from one subject to the next and I thought it may be confusing. But when I took another look at it, I realized that it really is meant to be explored one chapter at a time.

Ms. Carmichael was very detailed in writing as though from the perspective of someone with Asperger’s. She describes the colors, textures, sounds and feelings from Connor’s point-of-view, as well as highlighting how his and other’s actions are perceived and understood. Or misunderstood, which is a frequent occurrence for Connor.

During recess, a misunderstanding arises that culminates with Connor hitting another boy in the head with a bowling pin. I couldn’t help but laugh as he got caught up describing the sound the pin made as it hit the boy’s head, while in the principal’s office. That sounded so much like my son, it was like reading about him at school.

The suggested age range for this book is 8-12. My Connor is only 7, so some of it was still over his head and difficult for him to understand. But I think this will be a great resource in the next couple of years, as he matures and develops a better understanding of language and social skills. If you have a child in the suggested range, this may be a great resource in teaching social cues and learning to understand gestures, expression, and figures of speech.

As a bonus, the publisher reports that they are developing a lesson plan to be used along with the book as a resource in schools.

Spaghetti is Not a Finger Food is available as a Kindle download here.

You can find out about this and other great books by Little Pickle Press by clicking here.

Shining a Light in Dark Places

Although there is generally no shortage of differing opinions between autism parents, or different approaches to intervention, one thing we all have in common is our love for our children.  We also share the universal drive for them to be accepted in school and the community, to be understood, to be valued.

After the horrific events that took place at Sandy Hook Elementary, news reports and articles were seen everywhere, and a great many, in their haste to report something, indicated that the shooter was autistic, specifically, a person with Asperger’s.  That reporting set off a nightmarish chain of events in which ill-informed people, believing that autism could be attributed to planned violence, made hateful comments and put up Facebook pages calling for extermination of autistics.

Our community has worked so hard for so long to educate others about autism, and to acquire acceptance and inclusion.

It felt like more than defeat.  It was alarming.  Frightening.  We cried, and held our children closer, and we feared the backlash.

But then we got back to work.  We made signs to share across Facebook.  I made this one:

Others started sharing pictures of their loved ones, with meaningful descriptions.  Someone had an idea to put all the pictures in one place.  Tim Tucker, from Both Hands and a Flashlight, had a FB page that was empty, waiting to be used.  He offered up the page, as well as worked to create a website, and Autism Shines was born.

We couldn’t believe how quickly it grew.  Although it was created just a couple of days before Christmas, the FB page acquired 2,000 fans in less than 48 hours, and amassed a few hundred photos.  The website is now operational, and is gaining in popularity as well.

Such a simple concept.  A place to say, “this is my amazing, beautiful child,” as well as a place for adult autistics to say, “look at me, I’m just like YOU!”

It began as a tiny candle flame and is growing into the brightest light of hope and truth on the web.  It’s a place to say “we will not allow the darkness of the Sandy Hook tragedy to cast a shadow on our light.”

I hope you will visit and share your light too.  I shared mine.

This little light of mine…

Please visit the Autism Shines Facebook page here.

And the Autism Shines web page is here.

And a special thank you to the team of individuals who have worked on this project:

• Tim Tucker – blogger at Both Hands and a Flashlight and author of I Am An Autism Parent
• Jessica Watson – blogger at Four Plus an Angel
• Lexi Magnusson – blogger at Mostly True Stuff
• Flannery Sullivan – blogger at Living on the Spectrum:  The Connor Chronicles
• Jill Smo – blogger at Yeah. Good Times.
• Danielle A. – blogger at ProfMomEsq

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On the Sandy Hook Tragedy and the Lanza Family

There’s not much left to say about what happened a week ago at the Sandy Hook Elementary School, in Newtown, CT.  I’ve purposely avoided watching the news or reading too much online about the tragedy.  What happened is so inconceivable to me, the murder of innocent children and their teachers, that I’ve tried to keep my focus on my own family.

I know that everyone is struggling to understand how and why something like this could happen.  It’s our natural inclination to want to glean a specific reason for something that defies reason.

Unfortunately, the early reports about the young man possibly having Asperger’s Syndrome ignited and spread like wildfire.  There are people that grasp onto this as the thing that caused the incident.  Many in the autism community are working tirelessly to help make people aware that autism, or specifically, Asperger’s, is not a condition that typically lends itself to planned violence.

The truth is we may never know what combination of mental and emotional issues drove him to commit this atrocity.  There have been some articles that have quoted acquaintances of the mother, Nancy Lanza, as saying that she was a devoted mother who had her hands full.  It makes me wonder if things were what they seemed.

There’s a poem, by Stevie Smith, that comes to mind, called Not Waving but Drowning.

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Nobody heard him, the dead man,

But still he lay moaning:

I was much further out than you thought

And not waving but drowning.

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Poor chap, he always loved larking

And now he’s dead

It must have been too cold for him his heart gave way,

They said.

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Oh, no no no, it was too cold always

(Still the dead one lay moaning)

I was much too far out all my life

And not waving but drowning.

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And I have to wonder if, despite appearances, perhaps Nancy Lanza and her son weren’t waving, but drowning.

While there is nothing that could ever justify what took place, it doesn’t mean we shouldn’t seek to understand how and why someone could be driven to this kind of act, without jumping to conclusions about autism.

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How do we go forward, and how do we learn to identify those who may be drowning, so we can throw them a life preserver?  Because if we continue to swim past those that are drowning, they will eventually go under.

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If we truly want to honor the victims of Sandy Hill Elementary, we must be more assertive and aware as friends and neighbors; we must ask more questions, offer more help, and be more engaged with those around us.

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If you’d like to donate to the families of the victims of Sandy Hook Elementary, please click here for a link to My Sandy Hook Family Fund.

Talkin’ ‘Bout Muffins

The hubs was off a little early Thursday. He picked up Connor and they headed to Target to grab a few things. Hubs doesn’t shop with Connor often, so I anticipated some challenges.

When I arrived home, he reported that Connor was good at the store, so he agreed to let him buy a muffin on the way out. That was mistake #1.

Connor asked to choose his own, and hubs agreed. Mistake #2.

Connor chose a chocolate, chocolate-chip muffin, which is basically a muffin-shaped slab of cake, and hubs let him. Mistake #3.

Connor was told that if he got his homework done, did a good job showering and then finishing dinner, he could have half the muffin after dinner. He did those things, seeking reassurance about the muffin every few minutes.

After dinner, and before muffin acquisition, I asked him to hand me the remote so I could turn the TV off. He started arguing, talking back, and pulled it away so I couldn’t reach. I was pissed.

I uttered the unthinkable – “You’ve lost your muffin!”

But what he heard was, “FOR THE REST OF YOUR LIFE, YOU SHALL NEVER HAVE ANOTHER MUFFIN.”

“But…but, I earned it!”

Yeah, he earned it. But you can’t earn something and then be an ass right before you get it and still expect to get it. A mini meltdown ensued, but hubs was able to calm him by assuring him he could earn it the next day with good behavior at school.

Next day, I picked Connor up from school early for a doctor’s appointment. He’d had a great day at school and asked if he earned the muffin. I told him he could have it when we got home.

“But you should have brought it with you!”

We then had to discuss how long it would take to get to the doctor’s office, how long we’d be there, and how long back home. I’d had enough muffin talk. “If I hear one more word about that muffin, it’s going in the trash. Not One. More. Word.”

Somehow we made it through and got home without incident. I put the muffin on the table and told him to enjoy.

I came out of my room a few minutes later and found him laid out on the tile floor, face down and groaning.

“What’s wrong,” I asked.

“My stomach…it, it hurts. The muffin was too big and too much chocolate.”

Ain’t that some shit?

The root of all evil.

Norman Rockwell Holidays at Our House

It’s not that I don’t like holidays.  I think it’s more that I love the idea of holidays.  But then, as with life, nothing goes according to plan and things ultimately fall short of that quintessential Normal Rockwell image stuck in my head.  You know the one:

Aren’t they just precious?

See, at my house, cute little cherubs don’t fall asleep in an overstuffed chair, waiting for Santa.

At my house, mommy forgets every single year that she packed this special little holiday decoration away, and gets sucker-punched with it over and over again.  Imagine hearing this, 50 times a day, every single day, for 30 days straight:

But then my husband gets into the act.  See, he grouses and complains about the materialism and greed of the holiday, renounces the stores and their holiday sales ploys, and rages against the holiday commercials on TV.  Once I’ve completed the indoor decorations, he is then taken by the holiday fever, and commences to put Clark Griswold to shame.

Just the beginning…

And a mere 4 hours, two ladders, one trip to Wal-mart, and two changed fuses later…

It’s so beautiful, Clark.

But it’s not over.  He says he needs to get more lights for the other bushes…special lights.  Super!

My mom got into the act by ordering cookie dough from the school fundraiser.  Six boxes of cookie dough.  Each box contains four dozen cookies.  Yes, yes that means we have enough dough to make 24 dozen cookies (or for you math geeks, 288 cookies).  Oh, and then there’s the forthcoming $80 order from Swiss Colony.

Oh hey, there’s also the school holiday festival to talk about!  Yes, that’s coming up this weekend, and it’s shaping up to be a real hoot.  See, the 2nd graders will be performing at the festival.  Their song sheet came home last week, and I was, um, surprised to see this as one of their songs:

Sir, I want to buy these shoes for my Mama, please
It’s Christmas Eve and these shoes are just her size
Could you hurry, sir, Daddy says there’s not much time
You see she’s been sick for quite a while
And I know these shoes would make her smile
And I want her to look beautiful if Mama meets Jesus tonight

What. The. FUCK?  If that’s not a real pick-me-up, I don’t know what is.  Also, see my prior post about religion.

But I assure you, I have no plans to meet any strange men tonight, or any night.  The kids can sing about me dying all they want, but I’m not going anywhere today!  Also, don’t buy me shoes.  You guys never get the right size anyway.

In the midst of this chaos and madness, I stood on the front porch leaning against the brick post, cheek against the cool, hard clay.  As my husband dangled precariously from the ladder, I watched Connor, riding his scooter and running up and down the sidewalk in front of our house, playing with some neighborhood children.  And laughing.

It was exactly what I wanted for Christmas.  Beat THAT, Norman Rockwell!