Our Continuing Journey on the Spectrum: Kirch Medical Center

* For new followers, my son, Zackary, was diagnosed as severely autistic at age two. Since then, he's been downgraded to moderately autistic, with an added diagnosis this past year of ADHD and Unspecified Anxiety Disorder. For a brief history, visit these posts.

Today we're visiting the Kirch Medical Center in Rochester. One of the resources we've always lacked in Zack's development has been a Developmental Pediatrician specialized in autism. Our family pediatrician has been wonderful and open-minded, and recently helped us in our decision in selecting medication for Zack. However, if it's one thing we've learned in the past ten years, it's that there's no such thing as too many resources as the parent of a special needs child.

The past three years have been filled with struggle, featuring many peaks and valleys. To be fair, we've seen lots of peaks in regards to Zack's personal development. There was a time when we feared he'd never be able to communicate at all. We wondered if he'd ever be able to interact with family and peers. We wondered if we'd ever see a unique and vibrant personality develop. Over the past few years, we have definitely seen that. Zack can be, by turns, witty and smart, caring and empathetic, and he approaches the world from a simple perspective which cuts through all the sometimes mindboggling complications of an adult world. He makes us see and experience the world in ways we probably never would've if he'd be been born "normal."

He's also frightfully intelligent, especially verbally. I'm amazed at the concepts and language he picks up from television, how he contextualizes it and turns around and uses it appropriately in conversation. He knows how to do things with the TV and the iPad WE haven't discovered how to do, yet.

And he loves his family. He interacts with them, plays with them, and knows them. This is perhaps the thing we value most.

We've also experienced peaks in his services. Two years ago, Zack received funding for a community habitation worker - someone who picks Zack up after school and takes him on after school activities. Zack goes bowling, swimming, visits our local Discovery Center and Science Museum, and plays on the playground. He's participated in Special Olympics volleyball, basketball, and bowling. WE can take him bowling now. He loves to shoot around and play HORSE with us. These are things we feared wouldn't be possible eight years ago.

School has been another matter, however, Three years ago, at our district's public school, we started seeing the first incidents of aggression and unfocused anger. At first, we simply thought it was because he needed to be in a more autistic-focused program. So, he switched schools and attended an autism intervention program last year in a different district. Suffice to say, after a decent start, the end of the year devolved into chaos. We clashed with the administration in their discipline choices, his teacher seemed far more concerned about him meeting Common Core standards than intervening regarding his behaviors, and, to put it bluntly, something in that room seemed to be triggering him.

It didn't help that Zack is the size of a burly fourteen year old. When he gets upset, desks get tipped over and things get thrown. People, unfortunately, get hit. Zack had to be restrained several times last year. As someone who used to work with that population and actually did that kind of restraining, I understood. Abby struggled with it, as a mother, especially. She feared for her son's safety.

Another problem: Zack had begun exhibiting additional symptoms not consistent with strict autism, more in line with ADHD and anxiety. This, it seemed, led to his aggression and anger.  We had him reevaluated over the summer, and now ADHD and Unspecified Anxiety has been added to his diagnosis.

Regardless, less year turned slowly into a nightmare. Our final CSE meeting ended with myself and the principal lighting into each other, and Zack's teacher leaving the room in tears. It was decided Zack would move to the Oak Tree center on campus at BOCES. Despite the fact we believed this to be the best choice, we couldn't help thinking this was a step backward.

However, after a much better, calmer, progressive year, we're in a much different place. Zack still struggles with his anger and obstinate behavior, but this year has shown a progression instead of regression, and unlike last year, we have complete confidence in his teacher and support staff. In an instant of serendipity: his monitor and I worked together nearly seventeen years ago, when we were both aides in an autism intervention program. We are completely confident Zack is in a good hands.

We've also reevaluated our  feelings about Zack's future. We would love it, someday, if he could live semi-independently, perhaps take a few classes at Broome Community College. But we've had to really think what's best for Zack, and realize a completely different standard for "success" needs to be used to measure him.

Zack now visits a counselor twice a month. This has been extremely beneficial, as we try to work through some of his anxieties. He also now takes Concerta, which has made a dramatic effect on his daily behavior. And today, we travel to Kirch so he can be evaluated by a developmental pediatrician. We don't know what to expect, but we're hoping we can add another "team member" to help us guide Zack in his journey. Maybe we won't learn anything new. Maybe we'll hear things we already know. Regardless...when you're a special needs parent, there is no such thing as too many resources.

A Release Date, New Reviews, And How I'm Not As Comfortable With Zack's Autism As I Thought

First, some writing related news. Things Slip Through, my first collection of short fiction, has an official release date. It will "hit" the "streets" of Amazon November 15th, and there'll be a special pre-release sale through CreateSpace, starting November 5th.  Here's hoping that all the great pre-sale buzz will generate a productive debut...

Second, I came across another review last night, from fellow local author Joseph Falank. My favorite bit is the following:

The ultimate success of Things Slip Through is in its tone. These are some dark stories. And it's a credit to Lucia's talent that Things keeps moving. In his restraint, Lucia keeps us present with the people of his town instead of hammering us with too many thoughts or over-explanation. Writers do tend to be wordy, but Lucia keeps it lean and mean. That speaks of his confidence in his material.

What I love most about this review is the "lean and mean" part, because in all honesty, I've always struggled with too many thoughts or over-explanation.  I've labored intensely over the past few years to trim my prose and focus my word choice, and while I'm no Hemingway or Ray Carver, I think I've made some progress, and it's nice to see others thinking that, also.

Third, it's interesting that my novella, Hiram Grange & The Chosen One, has picked up some praise lately.  I also came across this review on Goodreads:

This is not your average tale of horror and Kevin Lucia is not your average author. It's a non-stop page turner that will grip you from the first page right through the epilogue. I could not put it down and you won't be able to either.

By no means have I "forgotten" about Hiram Grange, but it's been three + years since its release, and the reviews really don't come in anymore, so it's nice to see folks still stumbling across it.

But in other news...

This blog has always been about how our lives and writing intersect, or about writing, or about our lives in general. For awhile there, I blogged a lot about Zack's autism, (past posts here), and I haven't recently only because things have leveled off these past few years. Zack still has autism and life for us is far from normal (or rather, our "normal" bears very little resemblance to everyone else's "normal'), but things aren't nearly as hard as they were. Two things happened recently, however, that reminded me of a sobering fact: our son Zack is autistic. And we have no idea what the future holds for him.

First, several months back: one Sunday I had to stand-in for Zack's aide in pre-sechool church. And I've gotta say how thankful we've been for how our church has met Zack's needs. Some churches don't handle special needs well, but the folks at our church have gone above and beyond to meet Zack's needs. But one Sunday a worker was sick, and they needed me to fill in and watch Zack during Sunday School.

I thought I'd gotten pretty accustomed to Zack's autism. Thought I'd gotten past feeling embarrassed at how he behaves in public. And for the most part, I have - because in public, who cares, right? As long as he doesn't bother anyone else, I don't care how loud he is. And at home, I've pretty much turned a deaf ear to his verbal stimulation, because I know that's just how he needs to vocalize sometimes.

But in a classroom setting? Where I had to be responsible for his behavior?

Completely different story. I'm ashamed to admit that I was...well, embarrassed. At the way he ran around and wouldn't listen to the lesson, at how he stimmed, acting out his latest obsession from TV, at how he screeched and hollered and whooped. And I was ashamed then, too, because I thought I'd gotten past all that, gotten past feeling embarrassed. And because I felt embarrassed, I almost got angry, and that made me feel even worse.

And it sent a sobering message home. Right now, we're in a great place. He's transitioned well from the Children's Institute to Whitney Point Elementary School, he's done wonderfully, he's succeeding, and all his teachers love him.

But Zack is still autistic. And really, we have no idea what the future holds for him OR us. Abby and I operate (we have to, just to survive day to day), on the presumption that Zack will eventually (albeit slowly) gain the tools and skills he needs to manage his autism. We be able to manage it totally, that maybe he'll never live a completely "normal" life. We hold that potential truth far from us, not denying it, really...but giving it a wide berth.

And that day in church made me face that truth, head on, and it wasn't fun, at all.

Secondly and more recently (yesterday) while Madi and I were working on our little pumpkin lanterns for the front walk and Zack was making his usual rukus in the next room, Madi asked very quietly and matter-of-factly: "Will Zack's autism ever go away?"

Wow. What a question for an  eight year old to ask. She went on to say: "I just wonder, because the older grades don't have special classrooms for autism, so what will he do then, if he still has it?"

I answered with the truth: that Zack would always have autism, that it wasn't like a sickness that would go away, and that eventually, hopefully, Zack would learn ways to control his autism. She then answered in again a very mature voice, "That means I need to be a good example for him, don't I?"

I didn't show it, but this about broke my heart...because I don't want Madison to EVER think such a heavy burden rests on her shoulders alone. I explained to her that Abby and I and Zack's teachers were ALSO working hard to teach Zack, so she didn't have to worry about it all resting on her.

Pretty heavy stuff, huh? Driving home two very sobering truths:

1. My son Zack is autistic. He always will be. It's not something he can be "cured" of, it's something he'll have to learn how to combat every single day of his life.

2. In the face of all this, writing hoopla means very little. All the buzz surrounding the release of Things Slip Through has been amazing. The blurbs and reviews, the enormous response of local folks, the write up in the paper, this week's signing...these are things I've been dreaming of since 8th grade. But in the end, they pale in comparison to Zack's daily and future struggle, and his uncertain future.

But that's what family is for, what Faith is for, and what writing is for: to stand as bulwarks against the whirlpools of life...

On Regression and Autism

I've been planning all week on posting several different things about writing, publishing, reading, and my current WIP, but something else a little bigger has loomed above those things, so I'm going with that this morning.

Regression. 

re·gres·sion - n. Relapse to a less perfect or developed state

Any parent knows that raising a child is a push-pull-restrain-two-steps-forward-five-steps back sort of affair.  Soon as they unlearn a bad habit or trait, soon as they mount another level of development in one area, they fall back or regress in another.

It's a normal state of affairs. And every child is different, developing at different rates. However, for autistic children, regression can be a huge setback leveling a much bigger impact than a child returning to diapers after being potty trained, or sticking that thumb back into their mouth after spending months thumb-free.

If you're not a parent of an autistic child, then you don't understand.  Yes, we love and care for all our children equally no matter what their strengths and faults, but the BIGGEST hurdle - in my opinion - that autistic children face others don't is learning appropriate social behavior, reactions, and communicating in a way that is useful, beneficial, and functional.  

It's hard enough to get children not suffering from autism (notice I didn't say normal children) to this point, but for autistic kids, that's their main struggle: their inability to communicate feelings and needs, this impairment that holds them at a very developmentally delayed spot while others march on ahead.

And probably the worst - and scariest - part of autism is how regression can be sparked by one, simple little thing, undoing months...or a whole year...of progress that now needs to be rebuilt.  And it was so hard getting there in the first place that, depending on the level of regression, the impact can be disheartening to the point of debilitating. 

If you're not the parent of an autistic child, you just don't know. I'm not being unloving or uncaring, I'm just stating the facts as  they are.  And the fact is that right now, Zack's in the middle of a frustrating regression, of sorts.

As always, I need to again emphasize how lucky we are. Some families have it much worse. Sorry, not to mince words, but some suffering from autism have no hope at a socially functional life (again, notice how I didn't say normal). Zack has a more-than excellent chance.  But still, he's prone to setbacks (like all humans) and prone to regression, which we're getting a sobering reminder of.

Last week, I posted about how we're changing our daily television habits, turning the TV off every night before bedtime and just playing audio stories.   And so far, it's worked well.  Zack at first didn't know what to do with himself, while Madi adapted much more quickly, reading or drawing or writing (making Daddy proud with that last one, of course).  Zack is doing better now, sitting quietly and listening to the audio stories better than he was.

But he's regressed, sure enough.  We'd got him to the point in which he "stimmed" very little. For a little review:

Stimming is a repetitive body movement that self-stimulates one or more senses in a regulated manner. Stimming is known in psychiatry as a "stereotypy", a continuous, purposeless movement. 

Stimming is one of the symptoms listed by the DSM IV for autism.  Common forms of stimming among people with autism include hand flapping, body spinning or rocking, lining up or spinning toys or other objects, echolalia, perseveration, and repeating rote phrases.

That last has vexed us to no end.  In many ways, Zack's memory and intelligence is staggering.  He memorizes things word-for-word, and can repeat them and re-combine things and almost compose them from heart, almost word to word of the original. Someday, this may become a very useful trait.

But right now, it's also his worst enemy.  Because when this happens, he "goes away".  That's the best way to describe it.  His personality disappears, his eyes glaze over, and he's completely taken over by whatever he's "stimming" on.  Right now, it's Blue's Clues, and again, this is the frustrating part of autism. Blue's Clues is normally a pretty harmless, educational show. One we support.  

But for the last month, Zack has been literally OBSESSED with Steve and Blue and his notebook.  Literally, he barely watches the show once a week, but lately, almost 75 % of his daily activity is spent in stimming on acting out Blue's Clues.

Now, please understand. All kids mimic and act out.  Madi does it all the time.  But the difference is how much control  this stimming exerts over the individual.  Madi acts out certain shows and scenarios with her toy animals, but we can speak to her. Communicate with her.  She can put them away and come to dinner.   But when Zack gets into his groove....

He's not there anymore. There's nothing but the stimming, and it's like talking to a Zack-shaped robot. 

And he'd been doing so well. Worst part is, it came out of nowhere.  Not even sure how this happened.  Two or three months ago, he'd been watching a lot of Blue's Clues, writing in his notebook, and we though it was "cute."  I actually liked it, because he was writing and drawing different shapes, which he'd never taken much of an interest in before.  And there's something ELSE frustrating about autism.  Something they start doing or acting out that seems cute and fun at first...until it hits almost a "critical mass" and takes him over.

Completely.

Things are getting a little better.  Reducing the television at night, he no longer plays with his sister's Leapster (hand-held educational game system) because he was stimming off that, too.  And finally, he's returning to playing with things and his toys, his beloved trains in particular.

But it was a sober reminder.  All kids suffer setbacks, many of them mature at different rates.  But regression is always a looming specter unique to autistic kids.   And it looks like we've surmounted this one.  But, there will be more.

And that's just a fact of living with autism.

Operation: Blackout - On Autism and TV

No, it's not a plan for me to unplug from the internet, fast from Facebook and Twitter and focus entirely on writing with no connection to the outside world.  Would be wonderful if I could do that, but in order to do so, I'd have to take off for a week and live in a cabin with no internet access.  We do that once a year when we vacation in the Adirondacks every summer, so that time's coming soon enough.

Actually, I'm talking about how much television we let the kids watch.   Don't get me wrong: I'm not one of those "all television is BAD and kids shouldn't watch it, ever" type of guy.  Honestly, I don't get those hardline folks.  I'm very much in line with C.S. Lewis' adage: "Enjoy all things in moderation."  My parents set limits on my sister and I, there were times to do things, and times when certain things weren't allowed.  But things weren't FORBIDDEN or BANNED like I see some folks do with their kids.

To clarify, there are some SHOWS I don't let the kids watch, simply because they're not ready for them.  Sponge-Bob, for one. My students look at me like I'm crazy when I tell them that, because they love Sponge-Bob, think it's hilarious.  Then I say to them: "Hey, you're sixteen, and you find it hilarious.  To me, that means my seven and five year old probably shouldn't watch it."

Anyway, my guiding light for shows my kids should watch is twofold:

1. age appropriateness
2. narrative format

The first one is a no-brainer.  On one hand, I certainly don't want to inhibit my kids' growth and have them remain childlike longer than they should. But Madi is seven and Zack is five.  They should act as seven and five year olds. Ergo, they should only ingest material appropriate for seven and five year olds. 

The second (well, the first, too) really requires a parent to sit down and watch television with their kids.  Any show that's age appropriate and engages in a narrative format gets the green-light in this house.  And what I mean by that are television shows that engage in classic storytelling.  With characters, conflicts, resolutions, and morals at the end. So, for example, shows high on my list for the kids are:

1. Little Bear
2. Thomas the Train
3. Little Einsteins
4. Mickey Mouse Clubhouse
5. Franklin
6. Blue's Clues (with Steve, because Joe sucks)
7. Little Bill
8.Max and Ruby
9. Wonderpets
10. Wow-wow Wubzi
11. Octonaughts
12. Jake and the Neverland Pirates

...and a few more.  Of course, you gotta have those shows that are funny and hilarious, and Phineas and Ferb rocks the vote for me, on that one. Plus, Madi's just getting into classic 'toons on the HUB channel: G. I. Joe, Transformers, and JEM, and those are harmless, and ironically enough, have pretty decent "moral centers" to them.

But, we've decided we need to start turning the television off more.  Over the summer this happens a lot.  Abby's working, Zack is still in school, and Madi and I are out and about doing things.   But in the winter the television is probably on more than it should be, and even with the nice weather coming, we've decided that after bath, before bedtime every night, we should turn off the television, play some music or audio stories, and not watch TV.

Turns out, this is something we've needed to do for a real long time.  Madi adapts quite nicely to it.  And actually, I think she prefers turning the TV off before bedtime. She colors, plays with her toys, finds plenty of things to do.  It's Zack that has trouble.  He's really struggling because he simply doesn't know what to do with himself with the hour and a half of no television.

Which is kind of a wake-up call, for me.  Madi transitions well between things now, and she eventually gets bored of television.  With the TV off, Zack simply can't decide what to do.

Part of this is his autism, which is also partly why we're enacting the blackout.  Lately, he's been feeding off certain shows - even the good ones - and doing nothing but reenacting them.  Almost to the point in which his personality is subsumed by these shows, severely limiting his communication ability.

And that, of course, is the core issue of autism: communication.  There's lots of other things attached to autism, but the inability to communicate needs and wants is the hardest thing about autism to manage. And the fact that Zack gets....lost, for lack of a better word...in these stories and shows is a little scary.

Maybe you're thinking I'm making too big a deal of this, but unless you're a parent of an autistic child or know someone with autism, you just don't understand.  When Zack goes into his "Blue's Clues" or "Fresh Beat Band" zone...it's like he's not even  there.  That someone has scooped his personality out, and replaced it with a recording of this show.  His eyes glaze over, his face goes slack, and he's nothing but a walking recording of whatever show he's "stimming" off that day.

Scary.

Trust me.

So, Operation Blackout.  Hopefully, by limiting his media input before bed, we can cut back on his "stimming", as they call it.  Of course, turning off the television means we have to actually do stuff with them...but that's another blog post for another time...

Light It Up Blue - Autism Awareness Day

Those of you who know me best know I'm not one to get overly involved in causes and charities, repost this, that, and the other thing on Facebook. It's just not my way.  I hang out on Facebook for casual conversation, kicks and giggles, promotion of my writing stuff, and just for sheer randomness.  So I don't really use it for social action.

But there is one social cause that my family has become intimately aware of over the past three years, and that's Autism Awareness. We have a very personal, close to home reason why, however.  Many of you are new around the old blog, too, so this serves as a "get to know us better" sort of thing.

Three years ago come this April, our five year old son Zackary was diagnosed as severely autistic.  It was hard, as you can imagine.  He was two years old, not speaking, and we'd hoped it was merely a matter of delayed speech.  Abby took the diagnosis very hard, as any mother would.  

In my own way, I took it even harder. Because before ever meeting Abby and before teaching English, I'd worked with special needs children, autistic ones in particular.  And I'd seen it, at it's worst.  I knew how bad it could get, and at that point - we stood on the precipice of unknowing, and had no idea how things would turn out.

Three years later, and we've been immensely blessed. Zack - through a virtual miracle - gained admittance into a pre-school intervention program at Binghamton University, one with world-wide renown.  Since beginning school there, his vocabulary has exploded from one word to complex sentences, humorous and witty expressions, reactive and interactive speech we never thought possible three years ago.  We still struggle and Zack is still delayed, but at this point, if you met him on the street, there'd be nothing to differentiate him from any other normal, rambunctious five year old boy. The picture above would've been impossible three years ago. He never would've posed, let alone smiled.

But we're one of the blessed ones.  So many others have it much worse than us.  And early intervention is so important.  I can't stress enough how vitally important it is to eschew fears about diagnosis, forget about fears of labeling, to get tested early.  The people at the Children's Institute were delighted and eager to work with Zack, because as they stated it, they were getting him at the best possible time - that the ages between 1 and 3 were the "golden years", the best time possible to start intervention. 

And they were right.  Zack has grown in leaps and bounds, and his chances of living a life unimpeded by autism (notice I didn't say "normal", because our definition of that word has been radically altered around here) have grown exponentially.

But as I said, others aren't so lucky.  So this is one cause I happily promote every year.  That's one of my hopes and dreams for my writing career, is that someday I'll be in a position to do more to promote Autism Awareness, that my career will someday grow in a way that'll give me a greater voice with which to share Autism Awareness.  

For now, though, all I have is this little ole' blog, so that'll have to do. Please share this blog, visit Light It Up Blue today, on Autism Awareness Day.  Also, here are some past posts I've made on the topic, so you can see how far we've come:

http://www.kevinlucia.com/2011/08/keeping-up-with-lucias-autism-grants.html

http://www.kevinlucia.com/2011/04/national-autism-awareness-month-long.html

http://www.kevinlucia.com/2011/01/living-inside-bubble-named-autism.html

http://www.kevinlucia.com/2010/08/blog-ninth-what-is-autism.html

Doing the Right Thing For Our Boy

Haven't blogged about Zack lately, mostly because things have run on a really even keel.  Not a lot of upheavals to speak of.  He has good days - really good days - and days that are rougher than others.  Intellectually, there are no issues at all. Zack is developing into a very bright (maybe too bright) little boy.  

He's active, very happy and physically strong and healthy (of particular concerns, as severely autistic children often aren't), he's interactive, getting better at socializing all the time, and expresses his needs and desires and wants pretty clearly.  His range of expression and vocabulary has grown dramatically, and if it wasn't for his delayed emotional range, on passing interaction, he doesn't seem autistic at all.

But he's still not there, yet.  And Abby and I've seen that these past few months, more and more.  As I said, on the outside, he looks and appears and acts - on very good days - as if there's nothing seriously wrong with him, maybe just a little immaturity and that's all.  And he's so-so-so smart.  You just have no idea.

But...something is still missing.  He's four.  And VERY much a boy (which sometimes makes it a tough call.  Is it his autism we're dealing with, or him being a BOY?).  But there are still gaps, for lack of a better word.  Academically, he thrives.   He literally memorizes just about ANYTHING he hears, sees, or has read to him  - in fact, it may not be long before he's reading himself.

But he still doesn't understand things. It's a lot like the really intelligent, brilliant student in school who could memorize every line of all 150 Shakespearean Sonnets, but doesn't understand what any of them mean. We still have to discipline Zack as a two year old, simply because he doesn't comprehend certain topics.  Like why it's wrong to hit his sister.  If he hits her and we discipline him, he understands - sorta - that if he does it again he'll be disciplined again.  But he doesn't "get" that it's wrong and it hurts her.

And other things, especially safety concerns.  Thank God we got that fence put in last fall, because even though he's good at staying away from the road because we yell at him about it, he doesn't GET that the road is something to be scared of.  In fact, he's not scared of ANYTHING - which, in a way, could be considered good.  Of course, it's also part of being a boy, as we've come to understand.

But he's still delayed.  By four he shouldn't be able to slide-rule the mysteries of the universe, but he should be approaching a level of self-sufficiency. And, in some ways, he HAS.  He's improved so dramatically, there's simply no comparison to how he used to be.  But he's still not there.  

So we scheduled a meeting with Zack's teachers at the Children's Institute at Binghamton University , because Abby and I have decided to leave him there for Kindergarten and perhaps beyond, instead of having him start public school in the Fall, like we'd originally intended.  This was a big thing for Abby and myself, but perhaps even bigger for Abby.  Because hey, let's be honest....

We want our kids to be happy.  Successful. Healthy.  But we also want them to be normal. Accepted. To fit in.  And I think that maybe - probably even myself - we had both rationalized it as okay for Zack to get early intervention before KE,  but that by then he should be phased out into a "normal" school.

But he's just not ready.  And also, we realized that BU's program has been so fantastic, Zack has gained so much ground there...why change what's OBVIOUSLY working?  Plus, I've worked as a para-professional in elementary special education.  No offense to those folks, but the quality of para-professionals is hit and miss.  

Maybe Zack would get a good aide interested in Special Education and autism in particular, but more than likely he'll get a well-meaning but essentially clueless college student hired by the school district, trying to make some extra cash.  And school districts send these aides to workshops - I've attended more than a few myself - but it wouldn't be the SAME level of intervention he's receiving at BU, where his aides are currently pursuing degrees and careers in special education at the professional level.

And BU's center has world-renown.  Children coming from as a far as SWITZERLAND to receive intervention.  And there's YEARS-long waiting lists for placement. It was literally a blessing that we got in.  If he had problems in his public school, he'd never be able to get back into BU's program.

Fortunately, BU agreed with us, and were delighted we'd decided to stay the course.  So instead of phasing out, we're going to see this through.  We'll transition Zack when he's READY, not when we want him to.

It  all came down to this: our "needs" as parents versus Zack's needs.  And it was really a pretty easy choice, when you get down to brass tacks.  Because as parent, that's what you do.  Not what you want to, but what the right thing is for your kids.  There's really nothing else that matters.

Where's our boy Zack?

Madi opened up my feelings about something I've struggled with recently with the perfect line last night at dinner.  She was joking, teasing Zack, saying, "Where's our boy Zack?" so he'd say cheerfully "I'm right here!"...but the phrasing struck me, for some reason.

Where's our boy Zack?

Well, to be honest....not always here.  

In fact, sometimes I don't know where he is, at all.

Again, to note:  Zack's autism is moderate to mild.  We're so lucky to have reaped the benefits of very early intervention, and many families have it much worse than us.  Zack's overall intellectual ability is growing by leaps and bounds, and though socially he's still delayed, his improving handle on complex language is improving his social abilities, too.  At times, he speaks so clearly, coherently, and intelligently, we almost forget about his autism entirely.

Other times, however...it's impossible to forget.  Because sometimes - too often, still - Zack goes away.

I don't know how else to describe it.  He doesn't lapse into a fugue state, doesn't stare off into nothing, but rather descends into this seemingly random jumble of shrieks, mumbling, jabbering, twittering, twitching...spasms?  I don't want to call it that, because he's not seizing or anything like that.  But it's like a part of him goes away, or gets stuck, somewhere, and everything he's trying to say or express or do gets short circuited and comes out all jumbled.

It's scary, and it's damn depressing. Because I don't know what's going through his head.  Is he even thinking coherent thoughts?  Or does his brain literally scramble into nonsense during those....fits? (again, I hesitate to use that word, because that's not what it is, really).  I'm not sure what's worse...the idea that for a moment - sometimes as long as five, ten, fifteen or even twenty minutes - Zack blanks out and his mind scrambles....

....or, that on the inside, his thoughts are coherent and understandable to himself, but something has scrambled the connections, so he can't communicate with us, and is literally trapped inside himself.

Now, we've gotten very aware of the triggers.  If he's had a long day, with no nap, and he's very tired, he's susceptible to these behaviors.  That, in a way, makes sense, and doesn't bother me so much.  We're all a little scrambled in our own ways at the end of a long day.

But what frightens me is how small, little things set him off.  Like certain television shows, and not even crazy ones with the flashy-lights and loud music - there's one or two shows I'd even call good, educational shows that for some reason flip a switch inside him, set him off.  One day, he was so wired and babbling from one show, I couldn't even get him to nap, or stopping leaping and jumping around in aimless circles.

Angry Birds sends him sky-high.  We can't play it around him, or he'll demand we play it, over and over.  Tom and Jerry is a no go, also.  Leaves him screeching for hours.  Abby bought him an Angry Bird stuffed animal, and even THAT hypes him up - because he uses it to imitate the game - so much that Abby won't let him take it to bed, for fear he'll never sleep, will just play with it all night.

The sounds.  The screeches, the chirps, babbling gibberish and screams.  Very depressing.   Haunting.  Because when that happens, I literally wonder to myself: "Zack.  Where the hell are you, right now?"

And it's a sober reminder that as well as Zack has done, he still has such a long road ahead.  Right now, he's in a special intervention program specifically designed for autism, with a one on one aide.  He's mainstreamed on a limited basis with a mainstream daycare next door to his school for several hours a day, but under very controlled circumstances.  With a one on one aide.

Next year, he'll be mainstreamed into public school kindergarten.  An environment geared toward middle level, average kids.   He'll still have a one on one aide....but when he goes away...when he gets all jumbled...like he so often does...

He'll stand out.

Horribly.  Like the proverbial sore thumb.  Like a weirdo.

And how will the teacher - a public school teacher - react?  Will he have a good aide who will know what to do?

Things have gotten so much better, don't get me wrong.

But we've got a ways to go.  And sometimes, I'm afraid that Zack'll always have these moments, when he goes away somewhere, deep inside himself.  Leaving me to wonder.

Where's our boy Zack?

Keeping Up With The Lucias: Autism Grants, Summer School, 4-H & Horses, Etc...

So, for those of you who don't follow this blog for my random rants about writing, publishing, books and the horror genre and my little attempts to get you to read my fiction, it's high time for a Lucia family update.   Here goes...

The summer, for the most part, has passed by quiet and fun, though way too fast, as always.  One awesome development the last three years of the "Daddy stays home while Mommy picks up more hours at work" plan is hanging out with Madi.  We tend to ramble all over and do what we please, whether it be hanging for several consecutive days at the beach, hitting the fair multiple times in one week, wading in the creek catching crawfish, hitting the zoo, picking blueberries and visiting the animals at Grandma and Grandpa Lucias...whatever.  It's always great hanging out with Madi, and I feel like it's good to establish this foundation with her.  

I'm sure when the dreaded "no fly zone" of teendom hits, we'll butt heads.  Some days, she may not like me very much at all (which will pretty much just mean I'll be doing my job well).  But from what I've seen - as both a teacher and a parent - I think that because I've taken the time to hang out with Madi and get to know her, try to figure out what makes her tick, just spending TIME with her, I've hope that we'll make it through those teenage years to the other side together.

One thing that's really cropped up this summer: horses.  It's the one abiding interest that Madi has stuck with since two years old, be it toy horses, stuffed horses, books about horses, movies about horses, seeing horses, touching and petting horses, watching horses, shirts with horses on them: horses.  Two things birthed this interest, I believe. One: three years ago, the fair offered pony rides.  Only one or two rides, and our girl was smitten.  

Two:  While Madi still had a diagnosis of sensory integration disorder, she qualified for some PT (physical therapy) to treat her low muscle tone.  We stumbled upon hippotherapy, which is essentially therapeutic horse riding.  After several sessions, Madi was hooked.  She remembered every horse's name in the stable, had to say goodbye to them before she  left after every session.  

At the fair, she was enthralled by the local 4-H horse show, so today I'm calling 4-H to see about their free horse clubs.  She can train on a horse, rent a horse to perform on, all sorts of things.  Now, she's only 6.  She may get tired of horses after awhile.  She'll be playing kiddie soccer in the fall, and this winter we'll try her out at basketball.  But horses seems to trump everything right now. As a parent I hope she settles down into something she really loves and pursues it with a passion, and this seems to be something she really loves, so we'll get behind it, versus trying to steer her in an interest we WANT her to have.

Regarding Zack, we'll also be pursuing hippotherapy with him.  It's completely covered under his Medicaid, and Madi responded so positively to it, that we thought it'd be a great idea to give it a shot with him, also.  There's tons of research and articles about therapeutic horseback riding as treatment for autism, so we figure - why not give it a shot?  Maybe this could open a door for him, give him a greater sense of peace and rhythm.

Because this summer has been tough on Zack at school.  Always is.  With his autism he has a hard time adjusting, and during the school year he's in rhythm and follows a routine, then BAM.  School's over for two weeks.  He spends all of that two weeks playing outside, doing what he wants. Then BAM, it's back to school until the middle of August.  It takes forever to get him into rhythm and half as long to break him out of it.

Sending Zack to school over the summer is hard.  Think of it: our 4 year old boy has spent the last three years of his life in a 8-3, Monday - Friday school program offering no naps, nearly year round.  And it's done wonders for him, leading to breakthrough after breakthrough, offering us real, solid hope that he'll be able to function in society someday and lead his own life.  But it's so hard sending him off to school over the summer.  He should be running around and playing, like other normal kids.

Except...and this hurts doubly to say...it's still so hard to manage he and Madi together by myself, and Abby has the same trouble.  On one hand, they're just busy little kids, brother and sister, and they feed off each other like normal brothers and sisters do.   BUT, Zack just requires SO much more structure and restrictions - structure and restrictions Madi not only doesn't need, but would be unfair to impose on her - that a whole summer off would throw him entirely out of wack, and would restrict Madi's summer, too.  

Even after two weeks off, we see the re-emergence of all those  troubling autistic ticks that interfere with his normal behavior: light gazing, hand flapping, running aimlessly, humming and screeching meaninglessly, getting locked into self-repeating loops he can't break out of....

God help me when I say this...I don't think Zack would actually ENJOY the summer off, yet.  He'd just descend back into his  old behaviors - though they're not as all consuming as before - and wouldn't have a productive summer.   Anyway, he had a horrible time adjusting the first two weeks of school this summer, but as of last week finally settled down and was doing well at school...although, of course, he's had to miss the last two days for being sick, which will probably throw him off again, but what are you gonna do?

Intellectually, he's doing just fine - fabulous, actually, which I think will always be the case.  He learns straight-forward, tangible facts, learns words and phrases and speech like nobody's business. His biggest issues are the classic autistic hurdles: social behavior, appropriate responses, adapting to routine changes, and communicating EMOTIONAL desires.  He's also struggling with explaining his desires.  

He can tell us he wants something or wants to do something, but really struggles explaining his motivations, which is frustrating - because he ALWAYS has a reason, but often cannot articulate it (not the words themselves, mind you - kid is a word/phrase memorizing savant, almost), cannot articulate the thoughts and emotions behind his desires, though he's improved a lot in this area.

Along those lines, we've applied for an Ipad grant from Itaalk, an organization that provides learning technology for autistic children, teens and adults.  Between now and December, Itaalk is giving away a free Ipad a day to autistic and teens that qualify.  One thing Zack seems to understand intuitively: computers and related devices, such as - believe it or not - blackberries and stuff like that.  He just KNOWS how to use them.  So we've developed a joint plan with his Speech Therapist at school for using an Ipad in his daily schedule, and submitted an application.  We'll see.  Would love to see how that could change things for him.

This post is verging on overlong, so I'll save part of it for next time, later this week or beginning of next week, maybe.  I'll drop some teasers, though: it involves Zack's love of trains and train layouts, my decision to get behind that just like we're getting behind Madi's love for horses, grant possibilities, maybe a Kick-Starter project, building a train room for Zack, and this article that totally flipped the initial switches in my head, and this snippet from it:  

"Trains are a very common special interest among people with autism. If it's seen and treated as a "perseveration" (as an inhibiting obsession, not as an interest), it's easy to be worried about it.

But what if your son were an athlete, spending every extra moment building football skills? How much would you worry? What if he spent hours playing video-games with friends? Most parents are less concerned about these types of "perseverations" among typically developing kids - in part because these particular interests are considered normal...."

Hmm....

Sending Zack to Summer School, Adjustments

So Zack's back in school this week, and of course, we're going through a little readjustment period.  He's been out of school for about two weeks, napping every day, staying up later at night, sleeping in (as much as he sleeps in), and not having to race around in the morning, getting ready for his summer bus.

He started back up school this Monday.  No more nap, he falls asleep in the middle of his bedtime story every night because he's so worn out, and not only do we have to get him up and ready and fed for the school bus by 7:30 AM, he's now - because of his earlier bedtime - getting up at 5:30.   At this rate, I'll be getting up at 2 AM just to get any decent writing done.

That's not the toughest part, though.  The two toughest adjustments:  

1. his acting out at home, because he's being told what to do all day and by the time he gets home, he's tired of it, which means LOTS of battles and head-butting at home

2. Abby and I convincing ourselves that he still needs summer school

The previous two summers, it wasn't so hard to see the need.  So early in his progress, he clearly needed the intervention.  That first summer, we were at our wits end dealing with him and were desperate.  Last summer, he'd improved greatly, but very early into his summer break he regressed, so we knew he needed summer school.

This summer, it's been harder.  He's come such a long way.  Most of the time, he's fully interactive with others, very sunny and cheery, and he knows better how to actually play and occupy himself.  His diction and language have improved immeasurably, and, unlike the previous two summers when I watched both of them at once, this year I don't feel trapped in the house.  I'm able to work outside, even mow, without worrying that Zack will run mindlessly into the road or into the neighbor's yard.

But we still decided to send him to summer school.

Which is so hard.  Because when we stop and think about it - if we let ourselves - our four year old boy hasn't had a summer off since before his second birthday.  For a little over two years, he's attended school nearly year-round.

That's tough to take.  He's energetic, loves to play, loves to be outside.  Part of me - and Abby, I know - hurts to think that until the end of August, he'll spend the bulk of his time Monday through Friday sitting at a desk, being put through fairly rigorous learning tasks.

But, as much as this hurts to admit, he still needs it.  His intellectual development is astounding.  Though his speech is still very childlike, he's synthesizing words and phrases at an astonishing rate, using them very appropriately in context. He plays well with Madi most of the time.  We can take him places publicly, even took him on an overnight trip to Niagara Falls this past weekend, and he was GOOD.  Several months ago, we took him on a 12 hour road trip for a week to Michigan to visit family.  We NEVER could've done that two years ago.

BUT.  

He still acts out terriblly - completely out of proportion to the situation - when he doesn't get his way.  He has NO CONCEPT of waiting, which seems like a normal four year old thing - but again, completely out of proportion to normal four year old behavior.   He doesn't come and ask to do something, he just runs off and does it, again, not because he's rebelling - he doesn't understand the concept of "asking".  

Though he's better at understanding some things hurt and are "dangerous" and staying away from those things...he still has some gaps.  And, the worse, he still - especially when out of school - slips into that mindless, repetitive behavior - "stimming" - that is the hallmark of autistic children, and the more he does that, the worse his behavior is, and you can see him sliding into it, detaching from the rest of the world, which makes dinner times and other structured, "sit down" activities very burdensome.

We have great the perhaps soon in the future, Zack can spend the summer home, like a normal little boy.  My greatest fear is that he'll suffer a kind of institutionalization, and only be happy and peaceful with high structure.   But in the end, it's not about what I would like for him, but what's best for him, which is a tough call.  Zack will always need more structure, more directives, more guidance than other kids, simply because of his behavior, for a long time.  

And as everyone knows, doing the right thing is rarely the easy thing.  

But we're committed.   As a teacher, I've seen too many parents over the years chose easier paths, and I often wonder - were those paths easier for their kids?  Or easier for them?

Because like anything else, parenting is NOT easy.  Was never supposed to be.  Because things worth doing never are.

Zack Tyler Lucia: Two Years Later

Two years ago, my son Zack was diagnosed as severely autistic.  He couldn't talk.  He screeched, screamed, and howled.  He didn't know how to play independently or with his sister or us.  He'd pick up a toy, throw it over his shoulder, grab something else, and throw that by the wayside also.  Most the family gatherings we attended we didn't enjoy, because we spent the entire time managing his behavior.  I couldn't read to him, because he wouldn't sit still.

He was unhappy, most of the time.  We were exhausted.

All of the time.

Before his diagnosis, he was evaluated as needing speech therapy.  He also qualified for OT (Occupational Therapy) and Special Instruction.  His OT and SI teacher were sorta lovey dovey, nice, soft-spoken, laid-back "We let the child choose what he or she likes to do, in order to affirm a safe environment for them" or some-such thing.

His speech therapist, however, told us right up front: "I just want you to know, he's not going to like a lot I'm going to make him do.  He'll cry and complain, maybe even pitch a fit, and I'm going to make him sit at a table and complete all his tasks, no matter what.  I'm not hurting him.  I promise.  Just making him work."

Abby and I are old school, for sure.  That, and at that time I'd spent over 15 years in child services/special education/junior high/high school education.  I'd seen, first hand, what results from the "let's be pals" approach.  I basically told his Speech Therapist: "Have at it."

All due respect, he ran over his SI and OT teacher like they were rugs.  Could care a less if they came or not.  His Speech Therapist?

He did, in fact, whine a lot.  Cry.  Complain.  

At first.

And then, wonders never cease....

He learned.

And changed.  Got better.

Now, it should be noted he still had his whiny days.  And, as I've also noted before,  after nearly three years of intervention, his actual autism has proven to  be mild (downgraded now to moderate) compared to other cases I've seen.  But still.  His Speech Therapist made him sit down, work, and stay on task.  Not "choose his own thing".  And he got better.

Also?  He absolutely ADORED his Speech Therapist.  Would run to the window when she pulled into the driveway, and would wave goodbye.  If she was supposed to show and didn't, he'd ask after her.  She used discipline, kept him on task, made him work in spite of his whining and complaining....

And he loved her for it.

That realization, two years ago, taught me so much as a parent, and more than any Education class or seminar or workshop I've ever taken as a teacher.

And here he is today, sitting in one spot and playing independently, all by himself.   At the same table our Speech  Therapist loaned us, and eventually left with us for good.

Thank you.  You started us along the path that gave us our son back.

National Autism Awareness Month - Long Post

*Note: I'm tired and have to jet to work, so this hasn't been proofread as closely as I'd like.  I humbly apologize!

So, talking about this is a little hard.  Not only because of the impact it's had on us as a family, but as someone trying - in my own small way - to contribute my pittance of talent to the horror genre, I'm leery of using it as a banner to attract attention to myself.  God forbid I ever use such a thing to draw attention to me as a writer.

There's a fine line, of course.  If I can use my writing to draw attention to the matter, and share our experiences through writing...well, maybe that's part of the reason God decided to make me a writer in the first place.  I have written about our experiences, seen a story about it published, and hope to do more, both through fiction and non-fiction, in the future.

My four year old son  Zack is autistic.

Two years ago this month, we received his official diagnosis in writing: severely autistic with significant developmental delays.

At the time, life had come very close to being hell.  Zack had just turned two and couldn't talk, or communicate at all.  Because of this, he couldn't express emotions: anger, frustration, sadness; couldn't express his needs: hunger, hurt, a certain toy he wanted, etc.  AND, Zack was all boy.  Bullheaded, determined, strong, and aggressive.   

He whined.  Cried.  SCREECHED.  Clung to Abby.  He didn't know how to play, could take no satisfaction in anything he did.  Would pick up a toy, fool with it, toss it over his shoulder (destroying our house in the process, by the way), and move on mindlessly to the next thing. This seems trivial: but I couldn't even read to him, because he didn't understand and couldn't sit still long enough.

Let me say this, however: thank GOD he slept normally.  We have been inordinately blessed with that.  Most autistic children do not sleep well at ALL.  Abby and I have always said - as long we get sleep, we can deal with almost anything.

Obviously, the diagnosis was a blow.  With him not talking, we'd gotten him approved for Speech Therapy and other interventions,  but we'd hoped that would be it.  However.  Before teaching, I worked extensively with autistic children.  I knew their habits.  Recognized behavioral traits.  And, I had to admit to myself, much as I didn't want to...

I saw them in Zack.

So we asked our then Speech Therapist if we should have him tested.  She said yes, emphatically, (thank God for her, too), and we did.  For parents with young toddlers possibly experiencing delays - please.  Get them tested, now.  Swallow your fears and insecurities.  It doesn't mean you're bad parents.  It doesn't mean your genes are "faulty", somehow.  Disregard what other people say and "stigmas".  Early intervention is the only way.

Anyway.   Zack's diagnosis could've very easily been the proverbial straw on the camel's back, because at the time we were still trying to cope with Madison (his older sister) and her diagnosis with Sensory Integration Disorder.   

It's not Aspberger's or Autism or Attention Deficit Hyperactivity Disorder.  But it's on what's called the Autism Spectrum.  So close to Aspberger's.  In fact, before Madi's intervention (which she's phased out of),  she very easily could've been classified with Aspberger's.  Even now, she exhibits a lot of the traits:  sensitivity to light (especially flashing) and sound (especially loud) and sensations, high verbal acuity, very intellectual but socially awkward.  

Madison has come very far.  But back then, at Zack's diagnosis, she was incredibly hypersensitive to ANY stimuli, almost uncontrollable in public or family settings (though by herself a complete angel, completely obedient and quiet), and scared of things like slides.  Couldn't stand the touch of shaving cream or anything "icky".  So Zack's diagnosis on top of that.....

Whew.

I could chronicle all our experiences.  Would take another hour, probably.  Suffice to say this: if you aren't raising a child suffering from Autism or a condition on the Autism Spectrum....

You have no clue.  At all.  People still look my wife straight in the eye and say, "Oh, autism.  Bah.  A made up disease.  I don't believe that exists..."  or, "Are you sure, Abby?  How can you tell he has autism?  Maybe he's just a boy." 

It exists.

In many cases, if caught early enough, it CAN be treated.

We've been through a lot in the past two years.  We live a very regimented schedule, just to enjoy something resembling peace.  We have to turn down invitations from family and friends.  Can't go on many trips.  Have to schedule almost everything we do around our children's schedule, because any time we alter that schedule - even when Abby and I go out on date, even only once a month - we PAY for it, dearly.

Zack and I have skipped countless of birthday parties and family trips while Abby and Madi go ahead, simply because - not to be cruel - managing Zack's behavior would consume us, ruin the trip, and he'd get no pleasure out of the experience, anyway.  Even next week,  Abby and Madi will head out to visit family in Michigan, while Zack and I stay home, because even as far as he's come, he'd be too much to handle, and he wouldn't get much out of the trip.

This past September, Zack decided to stop sleeping.  For almost a month and a half, Abby and I ran on 2-3 hours of sleep, and would be getting up maybe every five minutes to put Zack back to sleep.  In desperation, we finally took him to a chiropractor, he prescribed melatonin - and sleep finally came.  Even better, melatonin is a non-narcotic, natural solution.

However.  Since his admission into the Children's Institute at Binghamton University, Zack has:

- expanded his vocabulary from one word t0 well over three hundred, and can now phrases them in articulate sentences, questions, expressions of emotion, enjoyment, frustration and need.  He can ask for things, can express himself, calls people out by name, and is even starting to offer appropriate, contextual commentary on just about whatever he wants.

- he sits at the table and eats breakfast, lunch, and dinner.  We sometimes struggle with that still, but more because he's operating at a three year old level, than purely because of his autism.

- not only do we read to him almost twice a day, he now picks up books and ASKS us to read to him.

- he plays marvelously with his sister, and can be very independent when he wants to be.

- he's almost fully potty trained.  (I suppose you don't need more details...).

- he's a mechanical and number whiz (Grandpa Lucia contributes to that).

- he's integrated on a regular basis with the mainstream pre-school at BU, and not only loves it but thrives there.

We still face lots of challenges.  Adolescence looms, because the hormonal changes hit those suffering from Autism so much harder.  And even closer is his eventual integration with mainstream education in KE.  Also, it's been very hard to put our son on a bus the last two years, pack him off to a five day week, seven hour day (no nap) school that runs almost year round.  Kid is only four, and he's spent the last two years of his life in school with only a week or so of summer break.  AND, we may have to suck it up and keep doing it for a few more years, to make sure he's progressed far enough to enter mainstream school.

And not to mention all the meetings, CSE (Committee on Special Education) Meetings, therapy sessions, trips to hospitals in Elmira, other things we've had to attend for both Madi and Zack. 

It's been hard.  Many parents might have balked at all this.   But as a teacher, I've seen that too often.  Seen parents afraid of stigmas and labels, and they don't seek the help their children need.  From the very beginning, I was determined that wouldn't happen with us. 

It's Autism Awareness month.  Read up.  Donate.  Find a local organization servicing this population and donate.   Those local to the Binghamton area, consider donating time and resources to The Magic Paintbrush, (located in the Oakdale Mall in Johnson City).  They service the special needs population in general, and are a true "non-profit".  They operate ENTIRELY on donations.

Really want to challenge yourself?  Young people - single folks, childless couples - volunteer your services.  You never know.  Just like I didn't, working for BOCES and the Handicapped Children's Association so many years ago.  Someday, YOU may be blessed with a special needs child.

Living Inside A Bubble Named Autism

This morning I almost missed one of my midterms.  Part of it was an honest mistake.  About half the students (my small Creative Writing class) had conflicts and were making the test up this afternoon, so somewhere along the way my brain flipped the actual time to then. Add to that my usual three AM fatigue, exacerbated by our kids' sickness-wacked sleeping schedules...

You get the idea.  Luckily for me I'd planned on getting in early.  I was dressed, heading out the door when our secretary called and asked, "Where are you? Your midterm starts in ten minutes!"

Anyway.  This seems to be a running theme in our lives, one that's grown more and more prevalent over the past few years.  Some of it - like this morning's SNAFU - is just part of having little kids, I think (though none of my fellow teachers has kids the same age as mine, so I've nothing to compare). 

A large part of it, however, has to do with Zack's autism and Madi's sensory issues (though that has decreased radically in influence over the past year).  Essentially: Abby and I live inside a little bubble called "Autism".  Even as high functioning as Zack is, even with the great strides he's made: his autism dictates our life.

Period.

We run a very regimented, scheduled ship around our house.  Those of you who grew up with me must find that strange.  How unusual, even unnatural that is for me, of all people (though in many ways it's been good for me, too).  However, it hasn't been by choice.  It's been to survive.   Our daily and weekend schedule is dictated by wake up times, breakfast, lunches, naps, dinners, bath times, and bedtimes.  

Zack and Madi are up at 6 AM.  Without fail.  Sometimes they'll go through streaks where they wake as early as 5:30. This results in me literally picking them up (not Madi anymore), screaming and crying, and making them lay in bed until 6 AM, for fear they'll start getting up earlier and earlier and earlier.

We have to decline family events simply because they've been scheduled during Zack's nap, because without one...he's still virtually uncontrollable.  When he wasn't sleeping at the beginning of the year, Abby and I couldn't go out at all, because it was hell for whichever poor babysitter we left in charge.

He won't sleep in a strange environment without Abby.  So that eliminates or complicates any possibilities of traveling overnight as a family.  Even going up to the Adirondacks, it takes Zack several days to adjust.  Our first several trips there with him were NIGHTMARES. 

Zack is also rapidly developing an increased awareness of his surroundings - which is a good thing -  but is also a troublesome thing.  

We must do things in a very precise order, now.  He must do things in a precise order.  One little hitch, anything different or out of place, a door open when he wants it closed, if he doesn't get to engage in an activity for a preferenced length of time, and he rockets from cute to screeching in zero to ten seconds.

Certain videos he can't watch.  Most kids this age lock into books or movies they want to read or watch over and over.  Madi - in a very normal way - loves The Lorax (Dr. Suess) and Free Willy.  Zack, however, is obsessive.  We have a complex book-rotating system for nap and bedtime that involves literally hiding books from his sight because if not, he WILL throw a fit if not allowed to read the same book over and over.  Certain videos take over his life, his expression....almost his very being, until he's nothing but a walking voicebox for said movie: its lines, theme song, everything.

And not in a cute, "Oh look how smart he is!" sort of way.  More like he's an empty, robotic vessel that will take on the attributes of whatever fills him up.  Tom & Jerry is catastrophic.  Thirty minutes of that movie and he's literally uncontrollable for the rest of the day.

In many ways, this has shaped the bulk of my attitudes regarding politics and the Church and religion and just about everything else.   Now, honestly - politics annoys me on an average day.  Most of the posturing (by everyone) and rhetoric makes me sick and depressed and sometimes sad to be a human.  

Same thing with all the splinter attitudes within and without the church regarding faith, the Holy Mother Mary, and whether or not rock music is evil. There's a reason why folks have always warned: "Never talk politics or religion in a bar."

But Zack's condition and the bubble it's encased Abby and I in has crystallized my feelings regarding these issues.  Far as I'm concerned, almost NO politician has anything to say I'm interested in hearing.  They're all self-involved puppets or figureheads or talking heads or demagogues that have very little in common with me or my family.

"But wait!" you say. "Sarah Palin's son Trig has Downs! And she's a regular mom, a regular person just like you and me!!"

Really?  

You think she has a hard time getting services for her son?  Finding a caregiver?  Advocating five or six times a year at CSE meetings?  Affording special equipment to meet her son's needs?

I highly doubt it.

I have just as little patience for the Church.  I've made no secret of my faith and my beliefs, and what we've endured the last few years and how God has provided for us has only strengthened my faith, in many ways.  It's also solidified my bond with Abby - because to survive this, to prosper, we need to be on the same page, working together, side-by-side.

But I have little patience for the Church or the religious leaders of the day or this new guy or that new theologian or this new firebrand to tell me how to live my life. To tell me how I'm supposed to treat others or what I'm supposed to believe.   I just have no patience for it.

Or the energy.

Because we live inside this bubble called Autism. And we've been very blessed to enjoy the kind of life we have.  Many folks have it much worse.  I'm lucky - blessed - to write as much as I do.  And things are getting better.

But, a secret?

I kinda....like it, almost.  Why?

Because I have a very short list of things that matter to me.  They are:

1. My family: Abby, Madison, Zack
2. Providing for them
3. How God has supported and provided for us when we've had nothing
4. My writing life  
5. And the few friends I have at work and through writing

And that's all.  So you see, I don't dismiss politics and religious matters and things like that because I'm apathetic. 

I dismiss them because I have more important things to tend to.

Like my life.