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
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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.

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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!!
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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.

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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.

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.

 

Ya’ gotta’ BELIEVE!!

Ever wonder where the name ” Captain Jacktastic” came from?
It was from a friend of mine that I went to school with lo these 30 years back.
FB reconnected us, and he would delight in the posts on my page regarding Jack.
It was HE who encouraged me to start the blog, and to share Jack with the rest of the world.
His name is Bart.
Bart hasn’t always had the easiest path, as this blog will illustrate, but he has ALWAYS had a sharp wit, a kind heart, and a passion for truth and justice.  He does a bit of writing of his own over on Facebook and I suggest you check out his Brain Damaged Perspective.
I am honored to call him friend.Ladies and gentlemen, and readers of all ages, I give you—
Mr. P.T. Bartman……..

I’m a Tinkerbell.
It’s not what you think, not that there’s anything wrong with that.
I view Tinkerbell from a different perspective. I view most things from a different perspective.
 I was this brain damaged kid, see.
 1973 was a pivotal year for me, third and fourth grades. I was starting to realize I wasn’t like the other kids. I didn’t think like them. I didn’t act like them. Things that came easy to them, I really had to work my butt at. Things that came easy to me, they didn’t get. Although I didn’t have the words to express it yet, I was Ginger Rogers to their collective Fred Astaire. I had to do everything they had to do, but in high heels and backwards. I didn’t have faulty programing. I had a whole different operating system. I could live with that.
Unfortunately there were those who couldn’t, or more accurately wouldn’t. My father being Dean of that particular school of thought.
My father only had two problems with me. Everything I did and everything I said. Other than that we got along fine, Mrs Lincoln.
It was around then that I came to the understanding that I wasn’t going to learn any of the things I needed to know in life, sitting in his classroom. At the high school where he taught American History, he was everybody’s favorite teacher and coach; but in this instance, his syllabus was severely limited and mainly consisted of examples of how I fu…messed up, and why everybody else on the planet was better than me. I decided it was time for independent study.
 It began one Sunday in Sunday School. It dawned on me, Jesus told parables. Parables were stories that taught lessons. In school I learned Aesop told fables. Fables were stories that taught lessons. But it all came together one night while lying in my bed with the dial tuned to 710 AM.
 Jean Shepherd (A Christmas Story) was telling a story about an Ovaltine lid and a Little Orphan Annie Decoder Ring when the pattern hit me. Jesus told stories. Aesop told stories. Jean Shepherd told stories. Stories teach lessons…stand back I’m on a roll here…books have stories, movies have stories, TV, plays, songs, poems, they all have stories. Everybody has a story and they all have lessons. And the lesson of the decoder ring was…don’t trust Corporate America (which has served me well these 40 years). Stories are made of words, I GET words, I could do this.
Game on.
What does that have to do with me being a Tinkerbell?
That story begins with the 1973 New York Mets.
I don’t claim to have Aspergers because I’ve never received that diagnosis but I have symptoms consistent with Aspergers or something else on the Autism Spectrum.
One of them is the depth that I’ll dive into subjects that trigger my interest. It becomes an obsession. I want to know everything about it. Not only do I want the information but I have a compulsion to share that interest with everybody. And then I’m flabbergasted when everybody else doesn’t fi it as fascinating as I do..
My father’s tack was to try to destroy any pleasure I found in these subjects and prove that everything I thought was wrong.
One of these earliest obsessions was Baseball. I had been to my first MLB game the year before and I was hooked. My favorite team was the Mets. Not surprisingly, My father’s favorite team was whoever was playing the Mets. And in Spring and early Summer he was having a hell of a time as the Mets collapsed.
They had started out strong, winning 6 in a row, but after that, to say the wheels came off the bus would be an understatement as they parked in the cellar for what seemed like it would be the rest of the season. And my father made sure I knew about every stinking loss. It got so bad that they were 14 games out of first place on July Fourth.
What made it even worse, was that my favorite player Tug Mcgraw was mired in one of the slumpiest slumps in the history of recorded slumpdom. He just plain sucked that year, and nobody had a clue why. Another fact that my father made absolutely sure I was aware of. He did everything he could think of to rock my faith.
I never figured out if my obstinance angered him or gave him some kind of perverse joy in upping the stakes. Probably both. The eruptions were coming quicker and quicker and becoming more intense as the season wore on. My father knew exactly what buttons to push to get me to melt down. It became almost like a family game between him and my sisters. I’d swear money changed hands on the action.
He used an hour plus car ride to my aunt’s house in North Jersey to prime the explosion at her 4th of July party.
Independence Day in an Immigrant’s family is The Holiday, a combination of Christmas and Thanksgiving and Summer and everything that is great about their story. And Papa Falcone’s family was no different. The annual party was not really optional. Everybody would be there. Family, family friends, friends of family. Food, both Italian and American Picnic, enough to feed the proverbial army. Lot’s of people to tell stories to. Aunt Marie’s Pool. And the whole damn sundae gets topped off with exploding cherries. I was so looking forward to this.
My father and sisters spent the whole ride tormenting me. For over an hour I was trapped listening to reports of the game every 20 minutes on the radio, interspersed with their witty banter and opinions of how bad the Mets were and how anybody who rooted for them was a moron. They had invented Sports Talk radio. They did 2 and a half segments on the fact that Tug had blown a five run lead in the 9th in Montreal.
I was not a happy camper when the car stopped across the street from my Aunt’s. I tried to escape into the party. But he followed me. Any discussion I was having got diverted into a discussion of the Met’s shortcomings.
The fourth time it happened. I blew. He wanted me to blow, and Oh Baby I Blew. That night’s firework’s had nothing on me. I had just acquired a new word in my vocabulary and I chose that moment to debut it. I dropped an F-Bomb in front of Grandma. Fortunately Mama Falcone’s grasp of her adopted language wasn’t great and she missed it. Unfortunately everybody else there spoke better English.
I spent the rest of the party on a time out in my cousin Anthony’s room.
I watched the fireworks from the backseat of the car.
After that we moved into a shaky detente. I spent as little time in the house as I could, and when I had to be there I stayed in my room. We both knew it was only the calm before the storm. I was besieged and I was afraid I couldn’t hold out much longer.
Then one day I woke up and my whole perspective altered, I read a story in the newspaper and the game changed.
My hero, Tug, had been having lunch with his friend Joe the Insurance Guy. Now besides selling insurance Joe was a spiritual guru to some of the Mets, having been introduced to them by their late manager, Gil Hodges. Joe’s message to Tug that day was on positive thinking and the power of belief. You have to believe Joe kept telling him.
On the ride to the stadium Tugger kept mulling it over and over in his mind.
When he got to the stadium he was mobbed by the fans asking for autographs and demanding to know what was wrong with the team. He signed every autograph and answered every question, “Ya Gotta Believe.”
He went into the locker room and M Donald Grant, Chairman of the Board of The New York Mets called a team meeting to reinforce the front office’s faith in the team, to tell them “We still believe in you.” It was all Tug had to hear. He started running around the room pumping his arm’s and yelling “YA GOTTA BELIEVE! YA GOTTA BELIEVE!”
It became the teams catch phrase.
It became my mantra.
But I knew that belief was not just in word but also in deed. Faith without works is dead.
So I told every body the Mets were going to win the division. I told my father. My father laughed and called me a moron. I told my sisters. My sisters laughed and called me a moron. I told my friends. My friends laughed and called me a moron. I told Pastor Opsahl. Pastor Opsahl patted me on the head, kindly. And then he laughed. At least he didn’t call me a moron.
But I just kept believing.
Then as July turned into August The Mets started winning.
And I kept believing and noticed there were less and less people laughing and calling me a moron.
And they kept winning, putting together one of the best September Stretch runs in history with Tugger on fire, unhittable, and screaming “YA GOTTA BELIEVE”.
And nobody was laughing when they won the division.
The lesson was there all along, all I had to do was believe.
Something else happened in 1973 to help shape my understanding of “belief”
NBC rebroadcast their production of Peter Pan with Mary Martin for the last time. I had grown up with Peter and the lost boy. I had read the books by James Barrie. I had seen Disney cartoons featuring Peter, but this would be the first time I saw the story brought to life (Disney wouldn’t re-release their movie to theaters for another year).
What got me the most was Tinkerbell’s near death experience, having been through one of my own. Her light fading as Peter begged us to save her. To believe. Not just to say we believe but to prove it by clapping. Faith without works is deaad. Not only was I on my feet clapping for Tink, but I made damn sure everybody in the room watching was clapping. Tinkerbell was not going to die. Not on my watch.
The joy I felt when her light started to brighten could have flown me to NeverLand.
It eventually dawned on me that I was a Tinkerbell. As long as I feel people’s belief in me, in both word and deed, I thrive.
But when I feel that belief waver, I die.
What does this have to do with Captain Jackastic?
Jack is growing up surrounded by that type of belief.
And I’m envious.

Fuck you, Autism.

This blog post comes with a strong language advisory.
I’ve been mulling over a few blog posts lately.  What to write, oh what to write…..?
I would start things….but not finish.  I would have great ideas, but no way to wrap it up neatly.
This was bugging me.

Then the other day, Serafina, (Jack’s biological sister- same mom, different dad, and the daughter of my heart) was showing me her photo keepsake album.  There were pictures of her as a small child, of her family in the south, and of her as a gangly teenager.  It was delightful.

Then she showed me a picture of Jack as a baby.
Now, I have seen pictures of Jack as a baby before, so it wasn’t a complete shock.
As a matter of fact, there is a picture of him on our fridge sitting in a high chair with a huge grin on his face.

But this picture was different.  It showed a very composed, calm child with a look of peace in his face.  I was moved by the colors, the composition, and the expression on his face.

It was THIS picture:
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Just look at him.
LOOK.
What do YOU see?

I see a blank canvas upon which a masterpiece could be painted.  A masterpiece painted with brushstrokes of love, devotion, and courage.
This little guy looks like he could write the next great American novel, pitch a perfect baseball game, find the cure to cancer, forge new paths, be the guy everyone calls to help them move cause he’s just nice like that, and so much more.

Instead: Autism came along and graffitied the hell outta this piece of art.
It wasn’t gentle– like say you get your painting and you are thinking: “wait.  is that ECRU?  I thought it would be more beige.”
No.
This was vandalism at its worse.
It completely and forever changed this work of art into something unrecognizable.

And for that I say:
FUCK YOU AUTISM.  Fuck you and the horse you rode in on.

Damn you to hell for stealing the future and possibilities from this child.
And that goes double to YOU, too Tuberous Sclerosis.
Where the hell do you get off sticking tumors into this kids brain or causing seizures and brain damage?!

Fuck you and all that you stand for.

So what are we left with?
A child –someday a man– whose future is uncertain.
Who will never live on his own.

Who will always be childlike.
Who will always need care.
Who will ALWAYS have tumors in his brain and always have to contend with seizures.

Make no doubt about it. Jackson is no Thomas Kincaid painting. Perfect and safe.  Mainstream.
Jackson is not  paint by numbers .  He defies realism and a conventional palette.

He is cubism.  He is a Dali. He is a Pollock.   He is a changed canvas that challenges YOU to come to terms with what you see and what you perceive as beautiful.  He is art as a verb.

He is the Venus de Milo– still beautiful if not what the artist originally intended.

And listen, I may not know much about art.
But I know what I like.

And Jack is– and will always be — a thing of beauty to me.

 

So here’s to us– the  curators of outsider art– or autism parents.
We see the world differently.
We have to.

Ours is a world of obsessions, aggressions, headbanging, stimming, and sensory overload.
We have found beauty in the unique, in the small victories, and in a moment of true eye contact.
We would give the world for our children, and still we say:
Fuck you, Autism.

 

 

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Self Care: A Public Service Announcement

In the autism/special needs community there has been alot of discussion recently over two events.
One is the “the pink letter”  from a “pissed off mom” proposing her neighbor euthanize her grandson since he is “such a nuisance” and will “never hold a job”.  The other is the sad story of a fellow blogger and tireless advocate, Kelli Stapleton who found herself in such a dark place she saw no other option than to try to take her life and the life of her daughter.

I resisted any public comments of these on Jack’s page  for several reasons.  In the case of the pink letter, it was because it was EVERYWHERE.  It didn’t need to be addressed by me and the person that wrote it was getting enough attention.  There didn’t need to be anymore.  It was wrong and heartless.  We all knew that.  Nothing I had to say would have  added anything to the mix.  In the case of Kelli Stapleton, what COULD I say?  None of us will EVER know what happened in that moment.  Perhaps she is bipolar and trying out new meds and snapped.  There are elements at play that NONE OF US will ever know.    She was stressed.  She was tired.  She was in a dark place.  She snapped.

But these two seemingly disparate stories serve to illustrate something so very crucial to us who are caretakers of those with special needs (and I use that term in an extremely broad manner) – SELF CARE.
It doesn’t matter if you are the parent of a child on the spectrum, or with a rare genetic disease,  or a severe disability, or the caretaker of an aging parent…….  The most important thing you can do for those in your care is:
TAKE CARE OF YOURSELF.

I have strived to make this blog and Jack’s page as positive as possible and still be realistic.

Is living with Jack a joy and a blessing?  You bet it is.
Still– there are there days that I am bleary eyed from lack of sleep.  There are days that I am beyond tears with frustration.  There are days that it takes all I have to get up and do it all over again.

But I have learned to take care of myself in even the smallest ways to keep going and keep my sanity.

My husband and I communicate.  We provide each other with time away from the house.  We get away as a couple (THREE hours once a week!).  But most importantly…….we do little things to keep our sanity and our health.
For me, its small things like the occasional hot bath, Word with Friends, and sewing/crafting.
For Clay, its sitting in the backyard admiring the view, Fantasy Sport Leagues, and reading.

What these small things provide for us is a little food for our soul.  Small breaks in the routine that allow us to function properly.

What would I have done if I received that letter?
I would have been pissed.
I would have been distraught.
I would have wanted to seek out the person who wrote it.
But once the initial shock wore off, I would have dismissed it.  Shredded it and burned it– gotten the nasty energy out of my home and moved on.  I don’t  have time to focus on that type of negativity.  And it can only serve to be cancerous in my caring for Jack.

What about reaching that dark place?
I would like to think that I am strong enough with enough support to not go there–
Which is the purpose of this blog post.
I urge everyone of you who reads this– special needs parent or not.  If you are in the position of caring for someone– ANYONE– remember that you need to take care of YOU, too.

It needn’t be big and complicated.  It just needs to BE.  My sewing room is set up so that I can get in and get a small amount of wok done at any time.  Find those things that feed your soul and do them:
Five minutes of stretching.  A few minutes of crossword puzzles.   A hot bath.  Let go of high expectations for the state of your home.   Keep a list of people you know you can trust to call.   And if you start feeling like everything is too much?
STEP AWAY
CALL SOMEONE
BREATHE DEEP

Let that moment of despair pass.

I also suggest sharing and bookmarking this site  courtesy of the Post Secret community.

I thank you for reading this.  I thank you for taking the time to consider the ideas I have put forth.
I thank YOU for whatever work you are doing for someone you love.