Saturday, December 31, 2011

New new new

I'm a fool for New Year's resolutions. I used to make long elaborate lists that I would pour over, edit and revise until they were just so in time for the last day of the old year. Beginning on the first day of the New Year, I would roll up my sleeves and go to work.

Even if that seems foolish, I actually have a pretty good track record with resolutions. I became fit because of one. I got out of a bad relationship because of one. I learned to live alone and live fully because of one. And during those not-so-momentous year changes, I would resolve to remain the better me, the improved me and that always helped me maintain discipline and keep goals and aspirations in mind.

Now that I"m running a household and a family my list is not elaborate and polished anymore. I may not even have time to write it down in my journal - which I barely write in too these days, but I edited it down to make it simple and true.

I vow to be more accepting this New Year.

Accepting of my sadness, my jealousy, my need to belong. Accepting of all the precocious 3, 4 and 5 year olds out there, who either push Gus out of the way as if he didn't exist, or with youthful exasperation make sure they show off their own accomplishments to highlight his short-comings. Accepting of school officials and therapists, who seems to know little, talk too much and basically keep their eyes on the bottom-line, like a Hedge-Fund manager. Accepting of Gus, even when he drives me to the brink with repetitiveness, idiosyncrasies and otherwise socially-unacceptable behavior. Accepting of well-meaning strangers, who question us with glances, or comment on Gus' height and looks, because those are safe things to comment on. Accepting of all the unwell meaning people out there, who let us know every step of the way, that they don't approve of otherness.

I want to be more accepting of myself, too.

I hope, sincerely hope, 2012 will be a better year for me.

Friday, December 30, 2011

Poopie Day

No worries, the title isn't supposed to make you feel pity for me - not today at least. Those who know me and Gus, know that we dealt with potty training in a protracted painful way from spring all through summer of this year (2011, the year of excrement, at least in my family). Gus is now sort-of-potty-trained. I wouldn't leave him in charge of a bunch of little boys without diapers, far from it. While he knows what's expected of him and while he mostly voluntarily goes to the potty for No. 1, he still has to be reminded and then marched to the potty to do his No. 2 business. This is working most days, as long as we stay vigilant and in our minds add up what he eats and what he poops.

At four and with a diagnosis of autism, that's not a bad place to be. Many children on the spectrum, struggle with personal hygiene in general and potty training in specific - it's simply hard to put the physical sensation of needing to go with the socially accepted motions of asking for assistance and going to the potty - especially when there are many other more "pressing" matters on the autism mind - like the hum of the fridge or the colors the sun makes on a puddle.

Today, we missed all the cues - twice. Meaning I'll be running a small but rank load of laundry tonight and propping up my bruised ego with a glass of wine. It's easy to have a special needs child as long as he behaves along the socially accepted norms - quirky is cute, needing a diaper at 4 isn't. That's where I still am. I get sad and tormented when I see Gus' abilities and achievements be outdone by everyone of his age and - worse - those years younger. It's hard to not be within the "norms" even when everyone around us assures me that those are highly suspect. After all, we all want to fit in and belong. When your child is of special needs, you find yourself feeling alone, more often than not and most often in the middle of a crowd - of neuronormal kids, who are dying to show off how eager they are to please and hit all those milestones - even if they are suspect.

Going back to today, II had the option of loosing it, yelling, guilting him, blaming myself or simply chalking it up to a bad day, but in the end all I was left with was soiled laundry and the sad thought that this is not the last time, I trust my 4-year-old son to connect the dots and head to the bathroom when the urge hits him.
In his defense, he is always very sorry and quick to help with the cleanup.
And today, he even - however reluctantly - sat on the potty after the second accident and squeezed out what I consider a consolation poop.
He wanted to make it right and make me happy - and he did.

He is not like others, but he tries really hard to be good.

Thursday, December 29, 2011

When New is Scary

Tonight just a brief little ditty on one of Gus' specific peculiarities (as any child with autism, he has a few more pronounced ones than the average Joe, and his may be his and his alone).

Gus is torn to pieces by conflicting emotions whenever he is faced with a new book or movie.
Mind you, my child is a brave soul, considering that much of our world and what we do in it, makes little sense to him, he courageously charges ahead most days and gamely adjusts his coping mechanisms, depending on how things go.
He is not a scaredy cat on his worst day, but bring a new book into the house or load up a new DVD into his player, and he goes and hides in the nearest closet, or - as he did tonight - decides to go keep the washer company out in the cold dark laundry room, rather than sit down to watch CARS 2 (our Christmas present to him).

As much as he loves all his books that he is familiar with and adores all the movies that he has memorized every line of, Gus is deeply troubled by new material.
As his mother and chief book/movie introducer, I find this his most entertaining idiosyncracy. It almost always unfailingly follows the same formula with such transparency that it allows much room for private amusement.

You can almost see the dark clouds move aside to let the sunshine into his eyes and watch his furrowed brow ever so subtly smooth out when you've made it through the first two read-throughs of an unfamiliar book. After that it is love-at-third-sight and until you introduce another book (and even after you do) this once-fearsome thome, will become one of his most cherished friends. He will request to read it until he has it memorized it and he will quote it whenever the context (however thinly stretched) allows it. He will study it on his own and recite it to himself in times of distress. He will absorb it and make it his - every last letter of it.

Movies are a bit more of a time investment. Ideally you sit down with him and talk him through it - all the way through. If you let him stop, he will want to go back to the beginning the next time around and watch it to that exact spot again, before turning it off - again. That's why neither Jacob nor I have ever seen Ratatouille all the way through (we may never see the end EVER) Sometimes you can inch further and further into a movie until you got him on board with the entire feature length, at which point he will sit and absorb and absorb and absorb. Until he has all the lines memorized, all the movements catalogued for reenactment and has completely fallen in love with all the supporting characters (Gus rarely seems to be very interested in the movie's star...a very fetching trait if you ask me).

In either medium he will protest tooth and nail for a new one to disturb his world. He looks (and is) visibly distraught. He slaps books shut, refuses to sit, marches in cagey circles nearby. Pretends to do something else, but ultimately he can't stay away and so submits himself to the torture of getting to know something new - a new story, a new character, new pictures, new songs...all things he will love in a very short time, but for now abhors with every fiber of his little body and brain.

So far, I haven't been successful in reminding him that he has not loved all his favorite books or movies when they first came into his life. I can see his incomprehension at the very suggestion that "Little Engine That Could" or "Cars" were once not liked by him. He simply does not remember a time without them.

So Christmas leaves us with five new books and one movie. We will have our share of arms flailing, hands wringing and tempers flaring, before we settle in to get to know something new.

It is fascinating to me to see a small person struggle so mightily with what most of us seem to enjoy - new stuff, new faces, new stories. I think this aversion will color all of Gus' life. He will likely struggle to make friends, but if he ever makes one - or two, or three - he will be the most loyal friend they ever make. Likewise, I sense that he will struggle with interests, hobbies, passions, but once acquired he will stop at little to pursue them to every tiniest facet possible.

I have no doubt about that. If nothing else that's what books and Pixar have taught us so far.

Wednesday, December 28, 2011

When weak, go back to strength

Not too long ago I endured a ghastly IEP meeting (individual education plans...something all special-needs kids have to have to conquer school) the goal of which was to determine whether Gus needed Occupational Therapy at preschool. While all six people at the table where in agreement that the more in-school therapy the better, the great and wise (really?) powers that be see it necessary to march parents through long drawn out assessments (I alone filled out 6 pages of fill-in-the-bubble questions) then hit the attending parent over the head with it.

Good and hard hit after hit and for good measure enhance the torture with confusing language. it's a death march, I tell you.

The only thing I understood, as I was expected to ingest and understand two pages of tightly typed verbiage as five very busy people looked on, was that Gus scored in the less than one percentile overall...

...less than one percentile?
At first I thought it was a typo, then I thought it was my math-challenged brain misreading it, but there it was black font on white: >1 percentile.
I swallowed back the big ball of tears and rage and calmly asked for this to be explained...and explained it was... more than 99 out of 100 children, if pressed into this assessment, would score higher than Gus.
I'll save what happened next for some other post...I have plenty to say about IEP meetings and the wide swath of despair they almost always cut in a loving parent's already fragile hopes and dreams, but I don't want to rant tonight.

Tonight I want to talk about my > 1 percentile child. A four year old with many weaknesses - apparently - who shows me every day that we neuronormals (the 106 out of 107 who are not considered on the autism spectrum) forget that weakness should never be talked about without strengths being taken into consideration.

After six days around an extended family for the Holidays, including two adorable, neuronormal cousins, Gus and his differently wired brain rule supremely in my mind.
Here is why my child is NEVER < 1 percentile in my mind, no matter what assessment is waved in my face:
- Gus travels like a champ. He sits calmly. He knows the route. He asks for snacks and water at reasonable intervals. He watches one in-flight (-drive) movie, then takes a nap. He doesn't whine. He never ask "are we there yet?" (because he knows, where he is). Overall he travels better for 6 hours in the car than his 41-year-old mother, who has nothing to do and all the time in the world to read newspapers front to back.
- Gus NEVER whines or manipulates. It's not in his inventory nor in his vocabulary. He is either happy or he is not - and he lets you know when he is not. He always knows what he wants to do next and is usually game to other options without ANY back talk. He is a cool customer that way.
- He never gets flustered by too much or too little attention. He never asks for more than what he has. He is simply very happy when someone pays attention to him for whatever reason for however long is possible.
- He is rarely bored and if he is, he is easily entertained.
- Gus never hugs or kisses for something other than to delight in hugging or kissing someone. His very charm lies in the fact that he has none. He is what he feels and it is 100 percent sincere and selfless.
- Gus has few fears and the ones he has he bravely tries to find a way to deal with. Hiding behind Momma's legs or crying is simply not an option for him. Boxing his ears at the loud fast-food restaurant bathroom flush is, and so is whispering quietly that something "is not so bad." He is a brave little man for having only four years of experience to fall back on.
- Gus is generous and good about sharing. At the same time, he has the innate sense - and few of us neuronormals ever do - to remove himself from social situations when it gets to be too much.
- He NEVER wants something, because someone else has it.
- He loves to be all by himself and play just for his own enjoyment. He NEVER panders to a crowd.

There. Now that's a > 100 percentile kind of kid in my opinion. Lots of strengths. Take your assessment and consider yourself a < 1 percentile therapist/educator if that's all you got.

Monday, December 26, 2011

Anew with Acceptance

After hitting the pause button for six months and taking a step back - as well as several stumbles sideways - I'm back and resolved to step lively and smartly and once again chronicle our lives with Autism, partly for others, such as family, friends and fans, but mostly for myself. If you know me, you probably know that I like things neat and linear, black and white, not so much gray and definitely not served up in chaos. Writing things down and revisiting them, helps me sort the bla bla bla from facts, the superficial from the essential and most importantly learn from my mistakes - hopefully somewhere along the way, I help one or two others, by hitting on something that hits a nerve and sparks an idea.

That's what sharing one's thoughts and experiences are all about - at least in my mind.

I am promising myself to take a moment each day and write something true to me. Something that touches on Autism, which like all mosaic and /or spectrum diseases is resplendent with mystery and throws me for a loop about a million times a day. There is little that is hard and fast, that can be explained in a nice and neat package, checked off on a to-do list, or solved in a 12-step process, there is, however, an endless supply of perplexing problems and issues that arise at a breath-taking pace each day and threaten to deflate me and many other parents, who try to explain our neuro-normal world to our autistic children.

I hope I hit a nerve now and then.