Just my two cents

Different not less.
Puzzle pieces
Autism Speaks
Are you a person with AUTISM or are you autistic?
Do you seek a cure?
Or do you want better understanding?

These are the things that threaten to divide the autistic community.  Where do you stand on the side of these slogans and/or organizations?

For me, the answer is simple.
I stand on the side of Jackson.

He is autistic.  He has autism.  He IS Different, not less.
Would I like for him to be “cured” of autism:
You bet your sweet ass I do.

Listen.
Jack and his network of support- we are waaaaaaaaaaaaay over here on the spectrum.  We are rather isolated.
Putting an iPad in front of Jack is not going to give us instant Carly results.  Schedules, icons, first/then charts, etc etc ad nauseum are part of our routine,YES, but we are not kidding ourselves here.
Jack is SEVERE autism.

SEVERE.
Add to that brain damage from infantile febrile seizures, a seizure disorder, and  Tuberous Scelrosis Complex and yes, we would very much like to take autism out of the equation.

Does that mean that I think ALL children/people with autism (or are autistic) should be “cured”?
Nope.
It means that I pass judgement only on what would be best for MY Jack.
I have worked with children on the spectrum.
I come in contact with special needs children and adults EVERY SINGLE DAY.
I speak for no one but Jack.

I am also not kidding myself.  I know there is not a magic wand out there on the horizon that will change Jack and his behaviors.  Only intense work by us (his family) , his teachers, and therapists.
It is a process.
It is one of extreme hard work and dedication.
It is not for the faint of heart or the lazy.

That being said:
Jack’s autism has shown him to have some endearing traits: his obsession with fuzzballs, his love of shadows and lights, his fascination with all things spinning, and his delight with the moon.

He is an open book with no hidden agenda

But, if I could, would I trade these endearments for Jack to be able to speak clearly, give direct eye contact and learn like a neuro typical?

Yes.
Yes, I would give all that I have and more.
I would love to see WHO Jack is without the obsessions, with complete language, and a mind of his own.

So Autism community:
Please don’t judge me when I say
I want a cure.

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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.

 

Baby Love

One of the coolest things about Jack is watching him around other kids.
He doesn’t always want to play. In true autism fashion, he likes to WATCH the kids play.
He will delight in them running AROUND him.
He will laugh hysterically when they play tag or jump on his bounce-poline.
He will even make sure WE see– “I see those kids, daddy.  I see those kids.”

But even knowing he felt this way about KIDS– we got a beautiful and tremendous surprise the other day when a friend brought over her newborn.

Baby Lavelle is about two weeks old and just under 10 pounds.
From the moment his mama brought him into our home, Jackson was entranced.
EN-TRANCED.
He was beside himself with Joy and Delight at this small creature.
He kept pulling on his mama to sit down with the baby “Sit with you? sit with you?”
He sat next to me while I held the baby.  He wanted a blanket and a pillow.  He graciously tried to put his own blanket on the baby.  He beamed.
He would look at us and say “baby.  baby.”
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He loved the nearness of the baby.
He tried to smell the baby.
He was not distraught when the baby fussed and cried.
He was gentle.  He was loving.
He full of joy and wonder at this tiny creature.

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Ah, Jackson.  Seeing once again the joy in small things– literally and figuratively.
Busting the myth that autistic children are devoid of emotions.

Jack babbled to the baby. ALOT.
I’d give all that I have and more to know WHAT he was saying or thinking.
Was he giving advice?
Was he welcoming a fellow being to the planet?
Was he telling the baby of all the joys this world has to offer?

The cynics would say that he was just mimicking adults talking to the baby.

Thankfully, I am NOT a cynic.