B is for Blue

Today is World Autism Awareness Day!

The day itself is kind of self-explanatory. After all, with an ever growing group of people found to be on the spectrum somewhere, it seems more than ever we need not just awareness, but education. And a whole lot of patience and understanding.

My experience with autism seemed to begin back several years (almost 18) when I knew that there was something about my toddler son that, well, didn’t look like what I’d seen other toddlers saying and doing. Back then I had nothing to compare by except what I saw with other parents at church or in stores. I hadn’t been around babies growing up, and none of my friends had children yet.

But his intense desire to line up toys, the tantrums that led to him crashing his head into the wall, the inability it seemed for him to hear his name…these things worried me.

At the time my family doctor brushed off my concerns. “Be thankful he plays so well by himself”  he said, seeming to be oblivious to the fact that my son ONLY played by himself…

As the years passed and children were added to the household with a certain degree of regularity my life became wrapped up in not only caring for the children, but understanding them. The thing is, I saw a lot of myself in them. I also saw a lot that didn’t look quite…typical.

I almost typed ‘normal’ but I’ve come to dislike the term. What is normal exactly? What right does anyone have to say who is normal and who isn’t?

But typical…yes…this was a problem.

My son was 12 when nearly a week at Mayo Clinic in Rochester, MN gave us the answer of autism. High functioning, Asperger’s Syndrome they said. So classic they asked if we could come back for another week for them to make training films for them to teach doctors how to spot and diagnose Asperger’s. We agreed and so our son was immortalized.

This was only the beginning of our journey with autism.

That year they also diagnosed our second son. PPD-NOS – Pervasive Developmental Disorder, Not Otherwise Specified. Meaning he too was living on the autism spectrum…somewhere. This is a frustrating diagnosis, but the best they had to offer.

Then it was my turn to spend time with doctors and psychologists and we found an explanation for my own social ineptitude growing up, the sensory issues, the strange habits…yes, I too fit on that spectrum, every bit as Aspie as my oldest son. Just…functioning better with age and practice, and a whole lot of therapy.

That was several years ago. Since we’ve had it confirmed that two of the daughters are most likely autistic to some degree as well. I have the doctor’s order to have the youngest evaluated but I’m unsure if I’m ready to take that step with either of them. The second youngest…well…today the psychologist told me she is every bit as aspie as me. I knew it inside, but I hadn’t had someone else say it to me before. Someone… official.

You’d think by now I’d be used to it, but every day still remains a challenge. Not all of the kids look autistic, sometimes they do. I homeschool so we have the freedom to be more ‘ourselves’ and maybe worry a lot less about learning all the ‘normal’ behaviors that society demands.

It’s not easy to talk about these things but today is a day for awareness so I thought, “why not?” I think that’s the point of the day, isn’t it? To show others that autism is closer than they think. They they likely DO know someone who is autistic. Or someone who is struggling to help someone who is autistic. Or maybe just loves someone who is autistic (which deserves mention because that’s perhaps one of the hardest things in the world to do.)

Right now we’re about to take off for Build a Bear where some of my kids can’t wait to get their hands on the Autism Speaks bear. They asked if they could tell the people at the store that they’re autistic. They wanted to know if it’s ok if they’re PROUD of being autistic.

I told my kids it’s more than ok to be proud of who you are. And to be proud of the the things that make you who you are. There’s nothing wrong with being autistic.

Who knows, maybe some of you will see us out and about today, wearing bright blue – the official color of Autism Awareness Day. Here’s a secret though – if you observe us in passing, for just a moment, at the mall, you’ll probably think that we’re just like you.

Guess what….In all the things that matter we are.

A is for…Attitude

Today is the first day of this whole blogging from A – Z challenge. What this means is that for most days in April (we get off on Sundays) we have to blog about some theme that starts with a specific letter of the alphabet, starting at A on the 1st and ending on Z.

Originally I’d thought about doing an A is for Autism, seeing as how most of my household lives on the spectrum somewhere. Or even A is for Adorable and throwing some pictures of my various household pets and children down for a quick and easy post. A is for Amazing would have been fun – I could have shared my favorite books. Or even A is for Asparagus so I could have waxed rhapsodic over my favorite vegetable of late.

But then today turned into a difficult day. The skies clouded over and emotions seemed to be running high on the part of everyone in the house, myself included. I’d started out determined to Get Stuff Done (please note the caps) and somehow ended the day curled under an afghan, drinking IBC root beer, and reading American Girl Books. Just because I could.

Children bickered. I mentioned the need to collect various math lessons (I homeschool remember) and suddenly everything took a turn for the worse. A screaming match with a child who feels I don’t love her when I make these requests was followed by an autistic meltdown on the part of another child, triggered by the shouts and door slamming of the previous encounter. And so the day collapsed, much like a row of dominoes under the influence of the merest vibration of floor from a careless misstep.

Perhaps that’s a fitting analogy. Today felt overall like a careless misstep that we’ve been recovering from. Eventually I did collect the math pages, the storms blew over, and the world calmed down. But the residual attitudes and dull grumpiness that followed was never fully shaken, and the day never really recovered.

Let’s be honest, I never fully recovered.

Under the best of circumstances I am dealing with depression with the occasional side of panic attacks (A is for Anxiety!) and my own autism doesn’t like when the Schedule Is Interrupted (note those caps again…). I had a plan for the day and it fell apart somewhere around 12:15. And though I could have made some attempt to pick up the schedule later (around 2 or 3 even?) I always have that feeling that I can’t quite do that – jump in and do whatever comes next. Because after all, the work between those hours needs to be made up, right? And there’s no way to compress 3 hours of work into one because well, I’m NOT Doctor Who or someone of similar caliber.

So where did things go wrong? With the derailment (oh there is THAT WORD again) or in my reaction to it later?

Flylady says “You are not behind, jump in where you are.” I’ve been trying to retrain myself to this because let’s face it, the whole, “There’s no point to doing anything now because I’m off track” is nothing more than an excuse and a very visible display of a poor attitude. Or more accurately a POOR ME attitude.

Change begins, as always, from inside.

This means it’s time to pull myself up by my bootstraps. Check that lousy attitude at the door. And yeah, get back to work. Believe it or not I had something scheduled for me to do between 7:00 and 8:00 tonight before calling it a day. (the time from 8:00 until bedtime is reading time, relaxing time, spending time playing games with the kid time…you get the idea.)

Flylady says to jump in where I am.

Yeah. I can do this.

Let’s all have a good night, ok?

Answers? Questionable.

So this week I went to one more doctor (rheumatologist) to get an answer on the lupus question.

Instead I got a whole lot more questions.

As I’ve been struggling with my health, I’ve also been struggling with the label that would at least give me some direction to struggle IN, the thought being that once you name something it can’t hold power over you anymore.

That IS how that old legend works, right?

Sadly, I need 9 more tests, which they took enough blood for to do, along with some extra that will be enough to do a few tests for some other patients in the clinic as well. If it worked that way.

The doctor is not inclined to think this is lupus though. Thank God for that! It could be a really nasty fibro flare (really possible). It could be some other connective tissue disorder which is the rheumatology equivalent to calling my son PDD-NOS when we had him tested for autism (Pervasive Developmental Disorder Not Otherwise Specified – meaning he’s on the autism spectrum but they don’t really want to say where…)

So. No answers. Now it’s back to life as usual, trying to keep myself distracted and focusing on the me in the moment, and not worrying about what I MIGHT have – a neat trick under the best of circumstances.

At least I have plenty to keep me busy, now that I’ve got contest entries to score (I judge various writing contests this time of year. Really hoping for that fabulous story to be lurking somewhere in this stack…)

I wish I were better at patience!

What’s your favorite distraction when you have to wait for something important?

Austen and autism

Ah, it’s been a wonderful week so far – not even that. The list on the side of the page, those books I’m currently reading, have just about all changed out. Sadly “Sink Reflections” will take a bit longer – I keep pausing to put into practice what I read. But hoping that I can press on shortly so the next book waiting in the wings can take its rightful place.

So, something old has moved on to “Daddy-long-legs” – a novel that flies by and will likely hit completion yet this weekend. I remember reading this book years ago – and loving it.

Something new..that’s where all of this gets interesting.

I’ve tried reading Jane Austen before. Years ago I made the attempt more than once, especially since I have a best friend who is near fanatical on her writings. But much as I tried I would stop, usually as the result of confusion. To be honest I started questioning WHY Austen proved so hard. The language is certainly a bit more unwieldy and the references are dated. But more than that, I failed to understand the action, to the point of questioning whether I was intelligent enough to even take on the classics.

But then realizing as well with an IQ somewhere past 140, that last wasn’t likely, there had to be a more reasonable explanation.

Was it the history? Not necessarily. I’ve spent a great deal of time in studying the past. I have a BA in history which must be worth something (to date, it’s getting the most workout with using Durant’s Story of Civilization to homeschool the kids). But I have a clear enough understanding of 18th and early 19th century life to understand what a barouche might be and enough French to muddle through the phrases thrown about “Daddy-long-legs” with confidence.

Even the language isn’t difficult if you take the time to read it. In fact the descriptions are quite well-done and the turn of phrase very nicely accomplished.

The answer I think lies in my autism.

I have Asperger’s Syndrome, something formally diagnosed a handful of years back that really helped me to understand a lot about myself that I never did previously. One of those things was the terrify muddle of social interaction – the inflection, the tone of conversation being my biggest downfall. I never ‘got’ the unwritten rules of things (apologies to everyone I offended so badly in my teen years and before) and quite often missed completely the undertones in a conversation completely.

But isn’t that what Austen is about?

After reading “Sense and Sensibility” I’ll admit to a fair amount of frustration that so much of what transpired in the book could have been avoided completely if people would just SAY WHAT THEY MEAN.

Oy.

Austen is rich in inflection. In undertone. And quite honestly, back when I first started to read her, I understood so LITTLE of that, I had really no hope at all in making any kind of sense of what was really going on in her books at all. Hence my frustration, and why I quit.

Over the years, especially since diagnosis, I’ve spent a lot of time in reading, in research, and yes even in therapy coming back to the same questions time and again. What are the people around me REALLY saying (or asking) when they initiate a dialogue with me. I am continually astonished at the things I’ve learned about how we communicate now.

And even more so when I pick up Austen and actually catch what she’s really saying in a complicated piece of dialogue. I am DELIGHTED by her skill with words.

And equally positive that about 2/3 of it is still flying right over my head.

With that thought in mind that means I can likely enjoy Austen again later. Moreso as I age, and grow and learn. Something to look forward to.

So I pick up “Pride and Prejudice” with anticipation and not dread this time around. I think I might actually ‘get it’ or at least enough of it to really enjoy the story. I can’t wait.

Though I can’t help but wonder…is this the reason why most people on the autism spectrum don’t enjoy fiction very much at all? It’s a mind-boggling thought. And certainly bears further analysis.