Saturday, April 13, 2013

Autism Understanding: Day 11

Screaming, he bolts out
Ugly words strike at my soul
I have failed the test.

I stand at the gate, watching, waiting. I know this is a waiting game. A hard, ugly, heart-wrenching waiting game. He's safe. Well, physically. Technically, that means he's not likely to break a bone or disappear into thin air. I wait.

My nerves are the fresh ones, I spent the morning at Andy's soccer game. He's already taken a runner on JoeyAndyDad twice this morning, at baseball. There wasn't a game, just a ceremony. Anxiety has completely overwhelmed him. Its not easy for Joey to stand, doing basically nothing, for two hours. Baseball opening day should be fun. For Joey, it isn't.

I'm the one who can stand at the gate, and wait.

Joey comes over to me, but he's still babbling, being a movie character. I keep my voice calm, the tone low and quiet. He can speak with me when he is ready to be Joey again, but not before. I am not participating in this particular script. I know it will only make him more agitated if I do.

The immediate trigger was something simple. It was beside the point, really. So many days, I'm the one ready to break into tears, wishing, praying, hoping that just this once, please just this once, be able to hold on and do what I asked of you. Please, please, don't be the day you can't do this. Please. And all the while knowing, realizing with horrible fear, pain, confusion, he can't do it today. He responds to the overload with apparent defiance. I know what it looks like is defiance, anger, disobedience, when what I need is compliance. The reality is it is a meltdown, his attempts to regain control of something, anything, and I am the parent, the thing he can cling to, lash out and try to control. He is telling me he can't do this.

The echolalia and echopraxia only go to prove the situation. He can't do this right now. He's overwhelmed. I have to wait.

He starts to calm down, runs into the house. I follow. He has calmed enough to find a more calming activity and engage. I toy with the thought, am I reinforcing disobedience? I know I am not through waiting. I do some small but needful tasks, and wait, watching his face, listening for his voice to change, his language to change. I wait to be able to talk with him, to try to come to understanding.

And today this is my job; and some days, it is JoeyAndyDad's job. Whomever has the freshest nerves, whenever possible. Waiting is hard.

Friday, April 12, 2013

Autism Understanding: Day 10

He leaps onto the table
"Mama Mia!" Dare they claim
No imagination?

Whenever I hear someone begin with, "people with autism..." to describe any one person with autism, I tend to cringe. A lot of lip service is given to the uniqueness of people, include autistic people. However, the power of over-generalization still reigns in society, and all too often an individual is overlooked and even disregarded, in favor of pigeon-holing categorization and labeling. Such is the danger of labels.

When Joey was very young, and we first took him down to Kluge, one of the most striking of comments made by Dr. Blackman at the time was to the effect of, Joey displays all the classic signs of autism- but not in a classic combination. At the time, it was striking because we found ourselves having difficulty understanding what it meant, because we were newbies to the road of discovering what it meant that Joey is autistic. The better we know Joey, the more the comment makes sense. It also explains some of the problems we have getting others to understand him.

We have been told Joey is "too social" to be autistic. We have learned this is rooted in ignorance of autistic people generally, and why they may- or may not- avoid or have issues with social interaction.

We have been told Joey is "too verbal" and should have his diagnosis changed to Asperger's Syndrome. This is rooted in ignorance of autism and the specifics of Asperger's Syndrome, as well as the work Joey has put in to learning to speak and use language. It also ignores the amount of energy and processing it takes for Joey to use language. It is the first skill that plummets whenever he gets angry or upset. Besides, we started this path with a non-verbal child. We are totally sold on the merits of early intervention.

We have been told that autistic people don't lie. This is a laugh, rooted in the problems autistic people often have with processing language or using language as a tool for expression. Joey does have trouble with some kinds of visualization, certainly has issues with language and idioms, and often has trouble with his "filters" (both receptive and expressive). He is, however, quite capable of lying, and understands the concept of both the "white lie" and the blatant falsehood. He knows that if he breaks a rule, lying is one way to try to get out of consequences- and sometimes it is a highly successful tactic (especially with folks who think autistic people can't lie).

We have been told Joey is too intelligent to be autistic. This is jut plain ignorant.

We have been told Joey is not smart enough to be autistic. Setting aside the basic ignorance this reveals of Joey's intelligence or person, not every autistic person is a savant. As far as we know, Joey is not a savant. I refrain from setting out complete and total judgement until we see how he grows up. We are still learning about Joey and his talents- as is Joey.

We have been told Joey is too heavy to be autistic. He is too well-behaved. He has too much eye contact. He has too much joint attention. He has too much or too little or too soon or too late.

It is all rooted in ignorance and blindness, and the devaluing of the individual. It is born of wanting to sweep people under a label and not have to worry about thinking about them anymore. It results in reluctance to provide support and service, to welcome him into his community, or to even get to know him. It is a dismissive attitude that often plays out in rudeness on the playground, people who make faces and comments and even actively bully. Ignorance is the root of fear.

Joey is Joey. And he is awesome.

I am lucky to get to know him so well. I love being his mom.

Wednesday, April 10, 2013

Autism Understanding: Day 9

Happy Birthday Boy
We love you more than words tell
Let us try kisses!

Happy Birthday, Joey-Boy. You totally rock.

Tuesday, April 09, 2013

Autism Understanding: Day 8

Forehead to forehead
I am lost in the blue depths
"I love you, Mommy."

Joey turns eleven tomorrow.

No child develops the same as any other, nor consistently in all areas at a given rate. Sometimes when I think of growing, I can still hear Mr. Rogers singing "Everything grows together... because you're all one piece..." But that doesn't mean you develop all the same, at the same rate. In some ways, Joey is 15. In some ways, he's still 5. But in all ways, he's all Joey, just the way he is.

It is shame we live in a world that can't just accept people as they are, as they develop, in their wonderful uniqueness. We do a lot of lip service to the idea, and there's lots of kids' shows that address the idea (some well, some not so much); but in the end, as we grow up, we move away from valuing people as they are, and towards a sort of dark prejudice and fear of people who differ from us. People who are, in some way, unexpected. New. Unknown.

Middle school is the vortex of this change, from "we're all in this together" to "exclusive secret club". Yes, it starts early- kids are quick studies of their parents, neighbors, family, and friends, after all. But the real abyss yawns at that moment when we feel that transition begin, from a child to an adult, and we try to make our own space in the world, construct our identity as something separate from the world of our parents and families.

It is well known that Middle School is Social Hell.

As we stand upon its brink, we know that we start at a beginning- a moment when balances must all be correct, lest we slip from the edge and into the dark. Will my guidance and example be enough to see my child through the maelstrom? Or will he be lost in the tempest, emerging as a stranger I hardly know? And if he emerges a stranger, who will that stranger be? Being unexpected, as we know from our social skills group, is not always bad. It is just not expected. Different from the expected.

I could return to the rant about needing social skills groups to help this whole age group navigate the storm, but that is not my point.

My point is that Joey is not ready.

We have spent the last three years treading water in a majority of skills other kids just "pick up", but Joey has to be specifically taught. Not that there has been no development of skills; but the pace is such that instead of moving forward towards being able to keep pace with his peers, he falls more and more behind. He may be the king of long division, but how many kids want to talk about it all afternoon?

Joey is dealing with growing frustration in trying to connect with people around him. He loves people. He likes to talk with them, be with them, play with them. However, his attempts to generalize conversation skills has been... not quite successful. If he gets the words right, they still sound canned, and the script only takes him so far. If he deviates from the script, his topics and words are so unexpected, the other person often has no point of reference to use to respond. If someone came up to you and, smiling broadly, announced, "Slay means to kill! Or to amuse immensely! Immense means really big!" what would you do? For most people, you would hesitate, trying to process what just happened and determine a way to respond. Some people smile while hesitating. Others frown. Other get this deer-in-headlights look. No matter what, Joey knows what that hesitation means. He feels it. He has been "unexpected." Weird. Different.

He is becoming aware, via his classmates, that being different is becoming problematic. He is entering upon a world where Different is Bad.

And that is a lesson that I want to counter. Because you know what? Different is not bad. Unexpected is surprising, and surprise can be fun. It gives you a new perspective. A new take on the world around you. Something new to think about... if you allow yourself to accept it, think about it, enjoy it. When you separate "bad" and "unexpected", you might end up at a surprise party.

With cake.

Joey turns eleven tomorrow. And that part of him that is still five- it wants chocolate cake.

The part of me that is still five wants some, too.

Monday, April 08, 2013

Autism Understanding: Day 7

Taking a walk, "Mommy!
Daffodils! Hyacinths! See
the birds flying home!"

When you have a bumper sticker on the back of your car saying, "Yes! You can ask me about autism!", people tend to ask you about their kid. Especially their little, little kid who is not quite in preschool, but Momma is worried that something may be up, and could I please watch him a minute and say what I think?

I remember needing that reassurance, that connection, that validation when Joey was little, and we were first told he might have autism. That scary edge of "OMYGODIHAVENOIDEAWHATTODOIFSOMETHINGISWRONGHELPHELPHELPHELP!!!!!" It is even harder to be on that edge when ignorant people are all around you saying, "There's nothing wrong with that kid! All these diagnoses are a crock! Just wait a little longer/quit spoiling him/smack him." You realize a huge gulf just opened at your feet, dividing you and your special needs child from most of society, which is intensely ignorant of special needs- even when their sibling/cousin/neighbor/extended family member has special needs.

The first thing I do when presented with this panicked situation is to calmly say sure, I'll be happy to meet your child. After all, who doesn't want to meet an awesome kid? Second, I remind the parent that I am NOT a medical professional, and if they are concerned, they should absolutely have their kid screened. Screening is almost painless, usually quick, and can be really helpful when done by a good professional.

Then I watch, and ask some questions. These parents want to be asked questions. They want to talk about their kid. They want something, some information or support or guidance. Some of them even have ready answers to some of the regular questions, about common milestones (does she talk? does she wave? does he line up his toys?) or general info questions (why are you concerned? did you notice something different? Do they seem different when around other kids?) But my big, star screening questions is, "Do they point?"

One of the common threads I find with the autistic kids I know is trouble with (not complete absence of) joint attention. There may be a variety of reasons for this issue, but generally, it is shown when they are very young by kids not pointing to things- things they want, things they notice, things they want other people to see. Joey still is limited in his ability to actually point at something. He has found other ways to draw your attention to something, but pointing is not his best. His finger flicks, instead of creating that line-of-sight between the fingertip and the object. He also does not follow other people's pointing very well. He cannot make that connection in space between the finger and the item.

This issue gives rise to a lot of the "in their own little world" myths about autistic children. Not knowing how to show you something, or how to see something you want to show them, is not necessarily a disinterest in showing; it is a problem of communicating. The disjoint can be so severe and frustrating that the person learns to avoid joint attention, or even shun it. After all, if you were told every day, day in and day out, that you were bad at something- not necessarily in a straightforward manner, but in a myriad of hints and signals- you might give up on doing it, too. Go with something you are better at, something less frustrating and more constructive for you. Try to find other ways to survive.

This is, once again, an instance of measuring a fish by how well it climbs a tree. Sometimes you have to take the time to get in the water and swim, if you want to get to know a fish. You may never grow gills and have to come up for air, but you'll see the real beauty of the strength to slip through water with teh flick of a fin.

Sunday, April 07, 2013

Autism Understanding: Day 6

He gives me a smile
A picture-perfect giggle
Twinkling eyes bright.

What does autism look like?

When people say, "but he looks like a NORMAL KID!!!" all I can say is, "That's because he is a NORMAL KID!!!" Just an autistic one!