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Archive for the ‘language’ Category

The shoes should have been our first clue.

After a perfectly delightful morning —one which began after more than twelve hours’ sleep for Nik and a leisurely breakfast for myself and Niksdad— we began our preparations for a jaunt to the local peach festival, followed by a visit to the park.  The pre-departure routine is always the same: “Okay, buddy, time for some clean pants.  Bring your toy and let’s get clean pants.”  “Clean pants first, then socks, MAFO’s and shoes.”

Nik is always eager to perform this routine; he loves to go out with us.  Lately, he’s begun to put his orthotics on by himself —even getting them on the correct feet.  He was just beginning to clamber onto the sofa, where I sat waiting with wipes and pull-up in hand, when Niksdad brought over his socks, MAFO’s and shoes.  The scream which issued forth from my heretofor sunny child was unlike anything I’ve heard except when he is in extreme and urgent pain.  It was the kind of sound which makes my heart race and causes me to drop everything and come running in an instant, certain I will find my child covered in blood.

There was much wailing and gnashing of teeth (to put it quite mildly) until we figured out the problem: the shoes.  Perfectly good, serviceable Nike’s which Nik has worn on many occasions though not for sometime.  (His other Nike’s were so filthy from repeated outings to the park— the laces were nearly black— that I insistedwe wash them last night; they were still in the laundry closet, slightly damp.)  I put the offending shoes on the floor at my feet while Niksdad went to get the still-damp shoes.  Apparently, even that was too close for those awful shoes; Nik screamed and jumped off the sofa, grabbed the shoes and ran to the entertainment center to put them on top.  That’s were they’ve been sitting for weeks now; it made perfect sense to Nik’s sense of order.

Once Nik realized the “correct” shoes were going on his feet he calmed down.  In fact, he seemed quite eager for our outing.  Off we went on our merry way.  “We’re going to get ice cream first, then go to the park. Ok buddy?  Ice cream first, then park.”  I repeated that phrase, like a mantra, as we drove.  Nik is usually pretty good about changed routines or routes as long as I tell him the sequence several times over.

I should have known that the shoe incident had my precious boy already wound too tightly.  As soon as I turned right at a traffic light where we normally turn left, Nik’s tenuous balance shifted and the tempest began.  I talked to him in soothing tones as I drove.  “It’s ok, sweetie, we’re going to get ice cream first then go to the park, remember?  It’s ok.  You’re ok.”  All the while, Niksdad held on to Nik’s feet so he couldn’t injur himself (or us) with his kicking.  I drove with one hand on the steering wheel and one hand holding Nik’s sweaty fingers, gently squeezing to give him some proprioceptive input which I hoped would calm him.

We parked right next to the entrance (God bless our disabled parking placard!) and waited for the storm to abate.  When Nik didn’t seem to show signs of calming, Niksdad said tersely, “This isn’t going to work, let’s just skip it.”  His frustration level was, understandably, rising with each howl and each kick which landed on the back of his seat.  Not realizing that Nik was already overwrought and wound too tightly, I insisted we at least get out of the car and try

There have been times when simply getting out of the car has shifted Nik’s attention enough that he is able to calm down and we end up having a decent outing.  I also felt very strongly that we neededI needed— to not be held hostage to the autism.  We spent the first two years of Nik’s life sequestered away from everyone and everything because we had to protect Nik’s fragile immune system.  We’ve spent much of the last couple years isolated from nearly everyone and everything except the occasional family outing.  At some point, I felt, we just have to say “Damn the consequences!” and try —just try— to be a part of the very society in which we want our boy to thrive.

Today was not the day for that.

We never made it to the ice cream or the petting zoo.  We pulled into the parking lot at the park and Nik fell apart again.  By this time, he was so overwrought he couldn’t tell us anything.  “Are you hungry?” Nik signed please so we offered him a bite of his sandwich; he thrust it at me and screamed.  “Do you want to go play in the park, sweetie?”  He simultaneously signed please and shook his head no.  I started to hum Mary Poppins songs to calm him.  It seemed to work until I stopped.  The wailing began again.

We drove home to nurse our wounded hearts and try to figure out what our boy was telling us, what he needed.  As we pulled into the driveway —like magic— the tears and tantrums abated and the happy singing began.

**********

Nik has now had lunch and is a very happy camper —singing Mary Poppins and Signing Time songs to his toys, playing with his alphabet puzzles.  We may attempt the outing again in a while —or not.

It’s so hard, trying to find the right balance between stretching Nik’s boundaries and honoring his needs.  Between giving my child what he needs and giving myself what I need.  Trusting my instincts and listening to the voice in my heart that says “We have to try…”  The lines are hazy and constantly shifting —like walking on a sand dune in a headwind. 

I believe we are at a crucial point in Nik’s communication development:  the more he knows he can make himself understood —and the fewer tantrums as a result of that success, the more intensely frustrated he becomes in those instances where he cannot make himself understood.  The extremes seem to be farther apart and I feel stretched to my limits straddling the chasm.  But I’ll write more about that another time —after I mull it over some more.

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Lately, I’ve noticed that Nik has some difficulty with specific control over individual fingers; he still does not point and has some difficulty isolating his index finger to poke things with any consistency. Not surprising is that he also has trouble turning his wrists outward. He can roll them in toward each other just fine. I don’t know if this is a permanent feature due to his cerebral palsy or if it’s something that can be helped with OT. Only time and effort will tell for sure.

Meanwhile, it does make for some interesting sign language. As with most kids who are learning signs for the first time, Nik tends to modify many of the signs to suit his physical ability. Children tend to learn the signs which come in toward their bodies sooner or easier than those which reach away from them. For example, more— which is signed by tapping your thumb and fingertips of both hands together —is easier for a child to sign than play which is signed by folding the middle three fingers down so the thumb and little finger make a “Y” then gently rocking them back and forth.

But I digress with my rudimentary sign instruction!

Nik’s picked up lots of signs since we began using the Signing Time videos several months ago; rather, I should say he’s picked up lots of words. The signs, well, many of them look kind of similar. I like to think of them as multipurpose signs. I don’t know if Nik signs this way because it’s physically easier or if it’s mentally easier —he already knows the one sign and “the other is sorta kinda similar…” but not really. Here are Nik’s equivalents:

Please = Yes
More = Shoes
Book = Open
Share = Show Me
Bye-Bye = Play

He also knows how to sign eat, apple, cat, and cheese (gotta love that Silly Pizza Song!). He understands many more signs such as sit, stop, no, drink, wait, ready, up, down, outside, want, diaper, toy, car, and others.

I’ve been working with him to learn some signs for other toys he has so he can be more specific in his requests; it’s challenging when he stands at the armoire and looks up at that basket and simply signs please. So it was with great delight that I watched him express a desire for a different toy this weekend —a ball —one he doesn’t yet have a sign for.

This request was unusual because he doesn’t’ generally care to play with balls, though this particular ball holds him in thrall. I started to try to teach him the sign for ball; basically you cup your hands loosely and touch the fingertips together suggesting the shape of a ball.

Again, Nik had difficulty manipulating his fingers so he improvised. Here’s his newest equivalent:

Ball is now the same as…

Cheese!

That’s a mighty big cheese ball! (Cheese is signed by mashing your palms together and slightly twisting them.)

Not to be confused with a big cheese of another sort…

(Taken 10/03/08 at this event.)

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Well, in a continuation of Kristen’s reference to a perfect storm, I must say that today’s evaluation was absolutely incredible. I am practically bursting with hope and joy and good feelings. And you know what? It feels good! It must be contagious! I know, I know, it’s the whole karmic cycle, the you-get-back-what-you-put-out-to-the-universe kind of stuff but…REALLY! I am not sure if the car was actually running as we drove home; for all I know we could have been flying I felt that good!

The evaluators really got Nik —and he was gracious enough to let them. In an hour and a half, this team of two people was able to discern more about my child’s personality, his intellect, and his communication abilities than an entire school full of therapists, educators, and psychologists was able to over the course of fifteen months! That said, I must also acknowledge that both Nik’s OT (Miss D) and SLP (Miss M) contributed greatly to the process; Miss M accompanied us this morning and Miss D talked to the staff OT yesterday to provide her input. I also have to take a great deal of credit because I made damned sure that this was not going to be another “wasted opportunity.” I provided tons of information, insights, and feedback. I set up our morning so that Nik had opportunities to settle in a bit. I went in with no specific expectations —willing for once to let the process take us where it would.

And, oh, what a wonderful ride!

In the end, we came away with some concrete recommendations for a couple of basic devices and —even better —how to actually use them. Not just “Push this button to record …” but how to actually implement them as a fundamental part of Nik’s daily routines; we are just beginning the administrative process to actually get them. Perhaps most importantly, I came away with the absolute knowledge —firmly rooted in my gut now, instead of just in my conscious, rational mind —that the decisions Niksdad and I agonized over all those months have paid off. Richly.

What the team saw in Nik this morning would not have been possible even three or four months ago. I cannot fault the school for not wanting to see these things in my son, but I do blame them for their unwillingness to provide the environment he needed to make the gains I always knew were possible; I think they simply didn’t know how and would not admit it.

DL, the assistive technology guru was all that I had heard he was —and more. Or is it less? This very physically imposing man was the gentlest of giants with Nik; after a very momentary meltdown (on Nik’s part, not DL’s) there was an instant connection. DL engaged Nik in a way that simply captivated all of us. Nik gave his attention in brief intervals with an intensity I am seeing more and more lately. It is an awesome thing to witness in my child. I wonder if this is sort of like what Drama Mama was describing in this post today. In any event, DL was masterful in the most understated and reassuring way. Watching him in action with Nik was a gift.

During the course of the evaluation we watched Nik do things he’s never done before. I don’t know if he felt the good vibes and knew it was safe to fully reveal himself but it was remarkable. Sure, he sorted some cups by size and then by color (yay! those sorting and classifying skills are finally kicking in!), but Nik came to me seeking comfort and reassurance —not something he really does even in the throes of his worst episodes —and he accepted it. He complied when the OT asked him to come back to sit down with her. He initiated play with DL and then responded with appropriate frustration when DL wouldn’t let him do something he wanted to do.

DL commented to me, “it’s very obvious Nik fully understands physical cause and effect but he also clearly understands social cause and effect.” I was floored. How could this man be so incredibly insightful about my “challenging child” (what he used to be called by some of the staff at his school)?

And when did my son suddenly catch on to this whole social cause and effect thing? Clearly I wasn’t looking when it happened!

I imagine that — much like life in general —everything is a matter of perspective. DL is trained to see all actions and reactions as communication; in his eyes, Nik was communicating loud and clear. The objective, he says, is to help Nik find ways to organize those communications and to learn that there is a dance of give and take.

This morning’s experience left me with the very good feeling that Nik will not only learn to do this dance but that he will, in time, become the master.

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I really can’t say
How I feel right now
I would if I could
But I don’t know how
Just give me some time
And I’ll come around
I’ll pick myself up
I’ll dust myself down

~ I Really Can’t Say (UB40)

? ? ? ? ? ? ? ?

If you need words for this entry go here.

(For more Wordless Wednesday posts go here.)

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