RETARD

Yes.  I am titling this blog entry with “THAT” word, because I need your attention please.

First, bear in  mind that I use that word to make you sit up and take notice about what I want to talk about.
I am not using that word to insult, degrade, belittle, compare, or humiliate.  You may read about that distinction of language usage HERE.

Second, I will give you one chance when you use that word to insult, degrade, belittle, compare, or humiliate.  Then I will politely, calmly, and privately pull you aside and explain to you why it is not a good word choice.

I give you that chance because I realize that we have  become numb to the words we use and we don’t always think of the further implications or origins. I get that language is living and evolves and grows and changes.

On Facebook yesterday I privately messaged one of my FB “friends” that his caption under his sisters picture was inappropriate and incredibly offensive as he stated she “Wasn’t as retarded as she looked”.   I gently explained as the mother of a severe special needs child, it was wrong.

His response was two fold:
1.  He was not insulting my child but poking fun at his sister.
2. The word has been in the OED since 1910.

oh.  I see.  So her making a funny face and being called retarded is ok.  Because yeah– my child never makes that face (uncontrollably, by the way) and you didn’t mean ANY offense to special needs kids ANYWhere……
except that you obviously used it to poke fun, insult, degrade, compare, and/or humiliate your sister (even in “good fun”)

Second, there are loooooooooooots of words in the OED.
171,476  words in current use, and 47,156 obsolete words. To this may be added around 9,500 derivative words included as subentries. So just because it’s IN THE DICTIONARY, doesn’t mean that is a “good word” to use.
Hey!!
I tell you what– THIS WORD is in the dictionary too.
Wanna use THAT?

Of course you don’t.  Because it’s wrong and unacceptable.

That is the way we have to start thinking about the word I used in the title of this blog.

AND, if we are going by the standard of “oh hey, it’s in the dictionary….”
CHECK THIS OUT:
The Almighty Oxford English Dictionary FIRST defines it as a modifier:
Delay or hold back in terms of progress, development, or accomplishment:  his progress was retarded by his limp

Second?
as a noun:

INFORMAL OFFENSIVE

A mentally handicapped person (often used as a general term of abuse).
Oh hey.  CHECK THAT OUT!!
OED specifically stated that it is OFFENSIVE and a TERM OF ABUSE.
As this FB “friend” puffed himself up and tried to show me how “smart” he was I just said:
Barney? Goodbye
And blocked is ignorant ass.
So, lets save the word “retard” for its use solely as a transitive verb.
Oh, and if you are looking for words for describe my son– or other “special needs” persons?
Here are a few:
adaptable
adventurous
affable
affectionate
agreeable
ambitious
amiable
amicable
amusing
brave
bright
broad-minded
calm
careful
charming
communicative
compassionate
conscientious
considerate
convivial
courageous
courteous
creative
decisive
determined
diligent
diplomatic
discreet
dynamic
easygoing
emotional
energetic
enthusiastic
exuberant
fair-minded
faithful
fearless
forceful
frank
friendly
funny
generous
gentle
good
gregarious
hard-working
helpful
honest
humorous
imaginative
impartial
independent
intellectual
intelligent
intuitive
inventive
kind
loving
loyal
modest
neat
nice
optimistic
passionate
patient
persistent
pioneering
philosophical
placid
plucky
polite
powerful
practical
pro-active
quick-witted
quiet
rational
reliable
reserved
resourceful
romantic
self-confident
self-disciplined
sensible
sensitive
shy
sincere
sociable
straightforward
sympathetic
thoughtful
tidy
tough
unassuming
understanding
versatile
warmhearted
willing
witty
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Do YOU see the fan?

I took Jack to the grocery store the other day.
We were out of chips.

This was not Jack’s first foray out of the house that day , so he was a wee bit cranky.
And, this was not one of his usual grocery stops– this was a different store.
But what I could I do?
We needed a specific brand of chips.   Autism parents, YOU know what I am talking about.

So we get into the store and start shopping — IMMEDIATELY Jack is enthralled by the huge row of ceiling fans in the store.
He is mesmerized and I am hard pressed to navigate the store with Jack because wherever we go he HAS to see the fan.

We finally make our way to the check out and Jack is beside himself with happiness as he has a perfect view of THE FAN!
And so he starts laughing and shouting
“I see the Faaaaaaaaaaaaaaaaaan!”
He stims a little.
Laughs.
Rocks a little.
Shouts once again: “Faaaaaaaan! I see the Fan!”

I am smiling.  Laughing.  And going about my business of putting the chips on the conveyor belt.
That is when I notice her.

Her.  The woman behind us in line.
She is doing every thing she can NOT to acknowledge us.  She is painstakingly looking away. Down.  Up.  Everywhere except in our vicinity– which is hard , because we are RIGHT NEXT TO HER. It is apparent that this is not what she bargained for when she came in to get her bread and milk.

Now I get that not everyone is comfortable being around special needs children OR adults.
I was not expecting her to become my BFF while we bonded over Jackson shouting FAN in the grocery store.

I realize that Jack and I threw a monkey wrench into her grocery shopping experience.

Which is too bad.
Because she was missing out on a little bit of happiness .

Had she actually peeked over at us she would have saw paroxysms of pure delight.
She could have shared some of that delight if only for a few seconds

Instead she did everything in her power to NOT see it.
Sheer delight and pure happiness was right there next to her and she turned away.

I invite you all to cast off expectations in the moment, to open your eyes to the world outside your comfort zone.
You may just find a bit happiness of your own.

Also?
We WILL smile back you.  I promise.

 

Falling for the boy

Well crap.

Jackson took a fall and broke a toe.

We thought he was running for a split second.  Until we realized that he was falling.  And then neither of us could get to him in time.  It was that super slow motion thing that makes you realize how quickly things can change.

Pavement 1, Jackson 0.

He’s got some lovely road rash to show for it too.

But I have to say:
Our little man is a trooper to be sure.  He doesn’t let much get him down.
My husband tells me that right after his brain surgery at 5 years of age, he tried to get up and indicated he wanted home.

Even as we assisted Jack in walking right after the fall he would look at us plaintively and say: Fix it? Tina! Fix it.

*heart broken*
Sorry, buddy, Tina can’t fix it.

But here we are five days past.  We’ve been to a doctor, we’ve been xrayed, and we are on our way to recovery.

Jack is once again, teaching me a good lesson.
He is same as he ever was.
And while I have had to give up a some (ok- ALOT) of sewing time to help him.
And I am not getting as much housework done as I could be on this break……

I am spending more time just hanging with the boy.
Talking.
Communicating.
Learning new things. (not to mention, fetching and waiting on Jack ‘s every whim and will.  🙂   )

And who cares if my sewing room remains in disarray?
Who cares if my floor is a little “crunchy”?
Who cares if that stack of sewing projects sits for a bit?
This is the here.
This is the now.
And sometimes you need a reminder that you need to put your feet up
(especially the one with the broken toe)
and be at one with the world around you.

Thank you Zen Master Jackson.

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Destination: Hope

Today I turn my blog over to an extraordinary woman name Fatima.
She lives here in Eureka, with her husband, two boys, and two dogs she rarely has time to pet.She is extraordinary because she holds down a very grown up job (honestly…..she wears nice clothes and sits behind a desk in a fancy office……), she runs an amazing organization called FAANFamilies Advocating Autism Now that has sensory friendly movie events, gifts iPads to classrooms, and so much more.Oh yeah.  And she’s a special needs mom.
Heck.  I’m tired just reading her credentials.

I’ve been bugging her for a year or so to guest write for me.
The other day she posted about her son’s IEP and I thought: THIS is the one.  THIS is the story that needs to be told.
Why?
Because in all the autism / TSC groups I belong to– there are three letters that strike fear, terror, anger, and frustration into the hearts of special needs parents: IEP. Individual Education Plan.

THIS IEP had a happy ending.
THIS is a story of hope.
THIS is a story keeping you eye on the prize
AND?
It’s got pictures of her son, who I fell in love with when I work in the PALs program.
A little cutie patatootie sitting on the rug, flipping through pages of a book with his effervescent smile and indomitable spirit.

Readers?
May I introduce to you,
the lovely Fatima…..
**********************************************************
To do a guest blog or not to do a guest blog?
My goal in the beginning  of writing this was to be witty and sound semi-  intelligent, now I just want to get through it without losing my dinner. 🙂

My amazing son, Caden was diagnosed with Fragile X Syndrome at the age of one and Autism at the age of two.  He has a wonderful little brother, Tate that was diagnosed with Fragile X at the super young age of 3 months.  The road has been windy, long, scary and has had so many twists and  turns that I have wanted to get off it many times.

 The light at the end of the tunnel must not have been in service during the first 2 years ofCaden’s diagnosis. (or so we thought)

Now fast forward at least 5 years…. Caden is 8 and I can see all that he has to offer to his family, his friends, and…..
THE WORLD.
This kids is destined for greatness…..
Today was a big day for our family.
We had an IEP (individualized education plan)  meeting for Caden to be fully mainstreamed in the Fall at Washington Elementary. For those of you that don’t know what that means– Caden will be in the regular ed classroom for the day, with necessary breaks, etc., as needed.   Currently, he is in special day and is mainstreamed.You couldn’t have told me a year ago that this day would come. Not because I didn’t believe in Caden, but because I didn’t know how many roadblocks we would be up against.
 His very first IEP was with 22 people in a large conference room with the air conditioner on in January of 2009.  Who the heck needs an air conditioner in Humboldt County?  We were nervous, uncomfortable and freezing our asses off.  All we wanted to do was to make sure our son received the best possible education.
Easy? Not so much!
Three hours later, my husband and I walked out of there dumbfounded.  What the heck had just happened?  Yes, Caden had received the services that we requested, but there was so much red tape, so many unsmiling faces, just so much.. SHIT.    It was a sad day, and I remember crying for a long time that night dreaming of what our future was going to look like.
Fight after fight.   Could we handle this? Were we equipped to handle it?  Did I really even want to handle this?My, how things have changed…..In this IEP meeting we discussed Caden’s growth and also the challenges that he will face. But, as a TEAM (yes, a real team) we decided that mainstreaming him is in his very best interest. By the end of the meeting, most of us all were in tears.

Happy tears.
Caden’s aide (not a worthy name for her at all) is truly amazing and she knows when he needs her support and when he can “fly” on his own. Caden’s 2nd grade teacher has truly shown our family what I can expect for him. She has paved the way for Caden to excel in anything he chooses to do. His classmates are amazing and I will thank his teacher for the rest of her life for showing them how to accept/love/share/cherish  Caden as their friend. The sky is the limit for him and we are so blessed that we have a school that will support Caden in being the best student he can be.
“Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope.” Maya Angelou
 cadenCadenhappy

A little Slice of Heaven……

Routine.
It’s what keeps our sanity.  Our family functions like a well oiled machine.
We each have our “assigned” tasks and chores and we rarely deviate from the path.

Except today.
Today, I decided to cook dinner and to do that, I would need to go to the grocery store.
With Jack.

While this may seem pretty routine for the average person.  It’s not really for ME.
I am beyond lucky that not only does Clay do all the grocery shopping, he also does all the cooking.
He can successfully navigate three stores every Saturday with both Jackson and Darrah and lay a bounty of well purchased goods on the counter upon his return home.  He can tell you what sales will hit when and where to get the best deals.  He has Darrah to help with Jack.  And it’s a perfect arrangement.
Especially for me!
But, hey!  It’s spring break.  And I am feeling quite domestic.  So what could POSSIBLY go wrong with me breaking Jack’s routine and bundling him into the car right after breakfast for a trip to Winco!?

Turns out– absolutely NOTHING.

I will grant you that it certainly helped that it was early morning and there was not a lot of shoppers.
I will also grant you that was in a good mood given that THIS was the only task I assigned myself with nowhere to go but home when I was done.

Jackson leads the way

Jackson leads the way

We walked the aisles.  We chatted away.  We sang Jackson’s “Annu Annu” song.
Occasionally something would catch his attention and he would stop to ponder it.
Some people stared. Alot of people smiled.

 

Jackson ponders the wide variety of canned beans offered at Winco.

Jackson ponders the wide variety of canned beans offered at Winco.

 

Jackson places the Tuna Helper box he had previously thrown on the floor.  I feel ya', buddy.  That stuff is nasty.

Jackson places the Tuna Helper box he had previously thrown on the floor. I feel ya’, buddy. That stuff is nasty.

We took our time.  We had fun.  I let go of any expectations of what could possibly happen and I just let myself be there with Jack.
And so I got to thinking…..ALL the stress we put on ROUTINE in the autism community? Maybe we need to shake that up a little now and then.  Maybe we need to trust our kids that yeah– they can handle it-if we let OURSELVES handle it, too.
I can tell you that todays break from routine was a little slice of heaven.  And I can’t wait to do it again.

Our checker?  But of course!!  Jackson spelled out the letters for him: J A C K S O N!

Our checker? But of course!! Jackson spelled out the letters for him:
J A C K S O N!

We had to stop and check out the lights on the way out.

We had to stop and check out the lights on the way out.

Dancing in the Moonlight

Hang on….
We are gonna need a soundtrack for this installment.
Please, go HERE and listen.

So yesterday, Jackson’s daddy put up a Wind Catcher that he had purchased at Costco.
Call it a Wind Catcher.   Call it a Garden Spinner. Call it whatever you want…….. JACK will call it a “Spinning” And from the time Clay took it out of the box and began assembly Jackson was engaged and interested.

photoblog2photoblog1

HOLY CATS!
This thing spins in TWO different directions.
It catches the LIGHT!!
It casts the most amazing shadows!!!
And……..
IT’S RIGHT THERE IN JACKS BACK YARD!!
photoblog4

Oh how delighted he was……
He stood there and played for hours….
Threw rocks at it. Threw pieces of fuzzball at it.
He spun it with his hands when the wind died down and was beside himself with Joy watching the shadows it cast.

But, there is always a down side to obsession with autistic kids.
You can’t reason.  You can’t explain temperance.  You can’t advise on moderation.

So Jack was none too happy to step away from the spinning.
I fed him outside.
He got on an extra sweatshirt.
And he stayed till dusk turned to dark– still laughing.  Still happy……

And when it became too late to stay outside, I braced myself for the struggle to get him back in.

I needn’t have.
I went outside and stood next to Jack in the moonlight.
He smiled.
He said “I see the spinning, Tina.  I see the spinning.”
I told him that I saw it too.
He must have know it was time to go in, because he turned and started walking back to the house with me.
He stopped mid way.
I turned to face him and he put his arms out.
I leaned down and he put his arms around me.
Then he began his happy dance, his happy song.
It basically consists of Jack rocking back and forth with a little bounce and chanting : “anu, anu, anu , anu, anu anu”

Time stood still at that moment.
I gave myself up to his song and his dance.

 

And like the lyrics go….
you cant dance and stay uptight 
its a supernatural delight 
everybody was dancing in the moonlight

And Jack dances divinely.

 

 

Out of the closet…….

It has been over a year and a half since I have begun blogging about my adventures with Jackson.
Through it all I have received nothing but positive feedback and praise for this little boy whose life touches many.
My readers here and over at Jack’s Facebook page have come to love this little boy.
Jackson’s smile gives joy to people.  His love of fuzzballs, slinkys, and all things spinning is endearing.
His struggles with seizures and TSC is inspiring.
Jackson is, as always, living in the moment.

So now it is time to come out of the closet.
Jackson is part of a movement that many support, some fear, and others are on the fence about.

Jackson is a medical marijuana patient in the state of California.
He is so with the blessings/knowledge of his local pediatrician and his TSC clinic.
While some may have images of a an 11 year old “sparking up” , let me assure it is nothing like that.
Jackson takes a dropperfull  of a non alcohol based tincture in the morning and a product called Rick Simpson oil (also known as “Phoenix tears”) in the evening.
Neither of these products have a psychotropic effect.
Let me repeat that:
They do NOT have a psychotropic effect.  That is to say: Jackson is NOT getting “stoned”.
There is no “head change”.

These are carefully crafted MEDICINES that have proved radical in Jackson’s treatment for his seizures, his TSC, and his joint pain.

The process is above board and on the up and up.
The dispensary where we choose to purchase Jack’s medicine is safe, friendly and……INCREDIBLY KNOWLEDGABLE about their products.

We live in Humboldt County which is widely regarded as the stoner capital/pot growing mecca of the United States.   However, we are not alone in the medical marijuana movement.

Check out what is happening in Colorado- with the Realm of Caring – and their specially crafted strain known as “Charlotte’s Web” that is showing amazing progress in the treatment of seizures.

Georgia is next.
Fingers crossed.
Check out what is happening there through Connor and his mommy

It’s happening, people.
It’s slowly happening, but it IS happening, and lives are being saved and being made BETTER with the use of medical marijuana.
I’ve seen it.
I’ve felt it.
And I stand solidly behind those that are fighting for the legalization of medical use of the cannabis plant.

Still with me?
Does it change the way you see Captain Jacktastic?
Are you appalled?  Surprised?

We are still who we are.
And we continue to fight the good fight.

Poetry readings

Poetry has always had a high priority in my reading life. In my teens I discovered major poets and also some that were rather obscure. I read with a thirst.  Words came alive to me.  Some poems,  like Burroughs’ Waiting have stayed with me since my first discovery in my teens.  I often reread it and find more to it.  More depth. And an even stronger connection to it.
I have passed this poem on to my daughter too– hoping that it will resonate with her.

Ah.  My 13-year-old daughter.  An exquisite creature who is off beat, and takes life on her own terms.
If poetry was humanized, SHE would be free verse, spoken word.  Vital.  Vibrant.  Off in all kinds of directions.

But THIS is a blog about Jack, isn’t it?

Jack who I lay next to each night as he falls asleep …….
Once Jack falls asleep, I text my husband to let him know all is well in the back bedroom and I will be out shortly.
About a week ago, in a playful mood, I decided to write a haiku rather than texting:
“Boy asleep, out in a mo”
A haiku.
5-7-5 syllable structure
It went

Softly sounds of sleep
Permeate the dark room
Jack at peace for now

I was quite pleased with my cleverness.
And so the next night I repeated the idea:

The boy snores soundly
Exhausted from being Jack
The good kind of tired

And so, being a dork, I decided to finish out the week the same way
(I am NOTHING if not a creature of habit!)

The boy sound asleep
Dreams of things that we cannot
Sleep sweet dreams, Jackson

He speaks of his day
The trees,the spinnings,  daddy
His mind is a book.

The boy falls asleep
Without a sound or a fuss
Dreams of Darrah’s room.

Daddy’s arms are strong
The best place to fall asleep
Jackson loves Daddy

Then last night, it hit me…….
Jackson IS haiku.

Jackson is haiku
He is a steady rhythm
Compactness of words

Jackson IS haiku
he’s juxtaposed elements
spare and raw beauty

Jackson IS haiku
he’s deceptively simple
yet years to master

Ask any parent of a special needs child:
There is poetry in their very existence.
Sometimes it’s Ginsberg’s HOWL.
Sometimes it’s the very structured iambic pentameter of Shakespeare.
Sometimes it’s the be-bop cool of Langston Hughes.
And sometimes it’s all their own- defying any box or parameters.

I invite you to keep your eyes, ears and heart open for the random poetry readings that may occur in your life.

photoJack3

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.

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.