You can’t always get what you want

When I first met Jackson, he was non verbal.
Completely.

If he wanted a drink, he would make a noise mimicking sucking a straw.
He and Clay would communicate with clicks.

There was laughter.  Smiles.  Noises,  But no real verbal communication

One day at a picnic, he busted out a “Hi, Jelena” to his respite worker.

We celebrated.
It was awesome.
And with prompts he would repeat that greeting with someone else’s name.

It was a breakthrough.  And I would be lying if I said that it was a piece of cake from then on.
There was echolalia that we have been able to direct to real life situations and use.
There has been nonsensical babble that we have been able to suss out a few words and BAM another breakthrough.
There has been times when Jackson repeats a word over and over  that we cannot make out….and then when we DO figure it out- he grins and laughs and VOILA!! another addition to the vocabulary.
And when he makes that connection? Boy do we honor it!
Chips please?!
We respond with “Yes chips! I get chips.”
Or “I want some water” (to play with , not drink!) “Yes Jackson, I get you some water.”

Jackson spoke and we honored it.  Jackson requested and we JUMPED!
Jackson made his desires known, we leapt at the chance to let him know:
COMMUNICATION WAS WORKING!

One beautiful night, Jackson grabbed Clay by the shirt sleeve and brought him to the window.
He said, “Daddy, I see the moon.”

Moments like that you don’t soon forget and are incredibly awesome.
It’s all wonderful, isn’t it?

Heres where I become Debbie Downer.
Nope.  It’s NOT all good.

Because at some point you have to introduce the word
NO.

And when you do…….it’s heartbreaking.

Suddenly the world becomes a much sadder place.

You cannot ONLY eat chips all day.
You cannot always play with water cups on the counter.
You cannot always get what you want.

With some of these requests, we have instructed Jack to be more pro-active
J: “I getta fan on!”
Us: “Jackson turns the fan on”

J:”ELMO BALLOON!”
Us: “Jackson get the Elmo Balloon”

J:”Spinning, please!”
Us:”Jackson gets a spinning”

And so on and so forth.
Sometimes Jackson gets that ok…..I’ll get my stuff.  Although, he would much rather sit in his chair (throne) and be waited on.
And then other times we have to work hard to get him involved– A prime example being his love of chips.  He will want chips and so we draw it out so that he does not just become a chip eating machine.
It goes like this:
Jackson : “Chips please!”
Us: “Yes, Jackson, I get you chips!  Where’s your bowl?”
Jackson: “Yes, chips!”
Us:” Let’s finder the bowl”
Jackson: “take it to the counter!!”
Us: “Finder the bowl, take it to the counter!”
Jackson: “whine whine whine”
Us: “Good job, Jackson!! Take your bowl to the counter!”
Jackson: “Yes chips!”

and so it goes…..on and on and on.

Communication is hard work.

And while you can’t always get what you want,
Jackson finds that you also get what you need:
Boundaries with love.

 

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2 thoughts on “You can’t always get what you want

  1. Sounds VERY familiar…
    We followed, and still do, the same path with our son. He had become very aggressive, however, Ethan he can’t write communicate correctly what he wants our when we say no…..:-(

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