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.

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.

At Wit's End

On Saturday, Jacob and I spent almost 6 hours tag-teaming and sitting on the potty with Gus. The result: He didn't poop at all that day. Instead he pooped in the yard the next morning during the 5 minutes Jacob was doing something other than watching him.

Today I picked him up from school, fed him, sat with him on the potty for 2 hours, let him nap, fed him, sat him on the potty again, and we are still sitting and will be sitting until he goes to bed. The result: He managed to sneak out of his room and pee on our bed...I'm washing the bedding now, while he sits on the potty.

So far all we got to show for potty training is this: An overwhelming aversion to the potty, lots of laundry, a complete regression in his bladder control and a new tolerance for pooping anywhere as well as in his undies.

Some will tell me he is not ready and to wait, which is all great, except my gut instinct tells me that we have already created a routine (where he poops in his once a day diaper) that he is comfortable with and will not want to deviate from. I'm running the clock, as all Autism specialists tell me that after 4 potty training will only get harder (haha)

I'm so angry it hurts my head. I know yelling at him won't make a difference, but what? what can I do to not feel so angry.

Why is this so hard and why is it so hard for me?

Daydreamin' in the sun

 

 

 

It's one of those beautiful early summer days, when the breeze still qualifies as a breeze (not the low-setting on a blow dryer) and the heat seems cozy. My beloved roses are threatening to burst open their buds any moment now and that makes me so happy, the air is thick with nature's anticipation for a season of heavy growth and under the weight of it all we feel momentarily slow and lazy.

My to-do list has a brief interlude and Gus is lazying on the Subaru's windshield, while I drink an iced coffee on the front porch steps. I'm thinking it's naptime, but then again he is so happy just day dreaming there, watching the clouds and telling me about Thomas-the-Train's latest exploits...

We are working on "look at Momma and say hi" when I point the camera at him, so I wanted to share the results. Gus' smile is worth millions in cold hard cash but really it's priceless to me. Even if eye contact remains a hurdle, his smile and friendly manners make up for it any day.

Short One

Just a brief note to tell everyone who has called, texted or commented, how much I appreciate all the thoughtful support and assurances....yes, the world must be populated with diaper-wearing 4 and 5-year-old boys and maybe mine will join their ranks (he'll be general if it's an army-sort-of-effort) and they'll march against potty-obsessed Mommas like me.

I really appreciate it - very much. I'm facing every day with a little more resolve and a little less inurity (not sure if that is a word...too lazy to look it up, too, shoot me you little diaper-guerrilla soldiers) there are faint signs of hope. The fact that he hates having it in his undies, the fact that he is genuinly sorry to make it in his undies, the fact that he can reliably tell you every step to get a toy reward...

It might be a long haul, but knowing myself, I will learn something from it, gain a bit of humility (which I need lots of) and make lots of funny stories out of it later...maybe to prop up another mom devastated by a son who won't do what she wants him to do....

Give it forward and make life more meaningful together.

Worse Before It Gets Better?

I feel inured these days.
Very inured.
Before you run to grab your dictionary, allow me to show off a bit (after all, my GRE studies seem to be the only effort of mine paying off with tangible results these days)

Inured means "to readily accept the undesirable"

Funny how cloes it seems to the word "injured", which would describe my pride, after a solid week of being met by long faces when I pick Gus up from preschool and leaving with a knotted plastic grocery bag full of smelly, sodden underwear and pants).

Some tell me they feel sorry for me, others venture out on a dangerously thin limb to tell me that it "gets worse before it gets better," still others tell me of the many, many boys they know first, second, third or some-suspicious-number -hand, who were well into their fourth year of life before they would poop on the potty.

I'm not buying it. My friends are all secretive about their boys' toilet exploits and I appreciate how nice they are trying to be, however, I'm simply close to despair over this whole thing. If there are so many boys not going to the potty at four, where are they? Not at Gus' preschool, I can assure you of that.

I feel inured. Though I still question plenty. Like why does this have to be so hard, and will everything be so hard?...and if so, how is that fair?

I've tried it all, I'm tired of it all. I can't think of anything else to do. Did I mention I'm tired?
All my puissance of conviction that with hard work I will see results has left me.
Now go look that up.

Day 7 - Poopie Training

No photo...sorry...can't think of what to take a picture of, since I'm not photographing poop anymore...I was toying with putting my tomato starts here, but that wouldn't really fit with the theme of this post...unless you consider how fickle they are...

No poopie in the potty today. Sorry. I so wish I could end this week on a high note and pump my fist in victory, but no siree, Gus is not playing along. He decided to go in his undies this morning and we plain let him and then let him squirm a bit, enjoying his ginger gait and repeated pleas to be cleaned up. If nothing else a bump in your undies is funny to look at when you are not quite 4 yet.

After a whole week, I can safely say Gus is not completely on my page yet and God has a slighly different plan for me too, so I'm going to work on my patience and humility without giving in.

I believe my plan is a good plan and eventually it will work with some preserverance. There is a bit of fine-tuning I have to do and my professional team will help me with that this coming week. Jacob and I both believe that it is important that we continue, so the diapers stay bye-bye and the added load of laundry is here to stay for a bit longer.

For now I will suspend the daily updates, unless I think I have something interesting to say or some exciting news to report. Talking that much poop without some development just plain isn't good for me or you.

Thanks for hanging in there with me. I hope you were entertained or even learned something.