Tuesday, August 9, 2011

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...."