Tuberous Sclerosis Awareness Day

oh crap.
May 15th has been deemed Tuberous Sclerosis Awareness Day.
May 15th came and went.
And it was only because I saw other people’s memes that I was able to throw a couple of reminders up on Jack’s FaceBook page.

But the actual factual truth is:
I don’t really care about it.

There I said it and I would say it again if I had to.
Sure, I totally care if you or your kid has it.  I can give you all sorts of info and advise you on what has and hasn’t worked for us.
But for reals?
I AM ALL TOO AWARE.

What I would like is a day of UNawareness.
I would love a day that I could sleep in and awake to find my twelve-year-old boy sitting on the couch , slurping down cereal and milk , and playing video games.
I would love a day that did not include incredible amounts of medicine and diaper changes.
I would love a day that did not require awareness of possible seizures.
I would love a day that did require me to be hyper vigilant.

I would love a day that I was NOT aware of the existence of Tuberous Sclerosis Complex and all that goes with it.

But there is no day for that.
And the thought of the day when I no longer have to think about it is too sad to imagine, because that means that Jack is  no longer in my life.

Now….. for all you people out there, raising awareness and fighting the fight:
I applaud you.
I commend you.
I THANK YOU
for doing what I cannot.
for doing what I am too tired and frazzled to do.

Please forgive me if I fall short on raising awareness and focus instead on raising Jack.

Jackson.  I a aware that he has Tuberous Sclerosis Complex

Jackson. I a aware that he has Tuberous Sclerosis Complex

 

 

 

 

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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.

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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.

 

 

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.

 

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.

Every little thing is gonna’ be allright

I am not a complainer.
Seriously.
I am an eternal optimistic PollyAnna that can find the silver lining in any cloud.
Looking back over my life, I realize that it is/was a pretty hardcore coping mechanism.
“Everything will be ok.  It HAS to be.  Otherwise, I’m screwed.”
I can endure anything, if I know it is finite.

Now, while the majority of you reading this may think it’s an admirable trait, I assure you that it is not always a good one to be around.   It can smack of denial, sugar-coating, and dismissal.  I can attest that it drives my husband bonkers.

As a mom of a special needs child, I read a lot of Mommy/Daddy blogs.  I love connecting with other parents who truly GET what I deal with on a daily basis.  Many of these blogs are laundry lists of good-natured complaints about their kids’ behavior, frustrations of dealing with bureaucracy and red tape, and the agony of sleep deprivation.  There are detailed accounts of their days of stepping on Leggos, living with extreme OCD and other substantial letters, and cleaning up messes.  Some are angry.  Some are frustrated.  Some are at their wits end.  Most all are honest.  Many of them are funny.

MY blog? I cannot do it.
I just cannot bring myself to write that way.
And believe me when I say:
It’s not YOU, it’s ME

Unlike other parents, I SIGNED on for this.
I knew the job was dangerous when I took it.

I didn’t get “the diagnosis”.

I didn’t have to deal with the unknowing.

There was no initial heartache followed by resolve.

So, TO ME, to complain and/or vent about my lot would be unfair.

It’s been MY lot in life to make lemonade outta lemons, quilts outta scraps, and the BEST outta every situation.
I came to this table, sleeves rolled up and ready for whatever was going to come my way.
And to be fair? It’s how I deal with most everything.

I am not better than anyone.  I am just different.
As I stated before:  It’s a coping mechanism left over from my childhood.

And Jack.
In the time since I have come into Jack’s life, I have seen his behavior improve, his vocabulary explode, and his joy blossom.  How can I gripe about anything when there is so much growth?
Not just Jack…..But ME!

Jack has given me a new outlook on life.  He has me focused.  Dialed in. He has taught me to let go of what is not truly important in life and to live in the moment.

As I approach the first year of blog writing, I realize that I have found MY niche in blog writing
(ya’ gotta have a gimmick, right?)
And that is to pass onto people a little bit of my PollyAnna attitude.
To shine a light on the good in the “bad”
To remind others that THIS TOO SHALL PASS

and everything WILL be ok.
It just all depends on how YOU look at it

And from where I am sitting?
The view is pretty beautiful.

An open letter……..

As alot of you know…..we have just returned from a two week vacation where we traveled to Idaho and Utah to visit family.  It was lovely.   Jackson traveled very well. (with ALOT of pre-planning on our part!)

One of the highlights was visiting the Hill Aerospace MuseumImage

THIS, is an open letter to the woman that openly stopped and stared at Jackson at one point in our visit there.

Hello.
I understand that you might have been a little put off or uncomfortable with what you witnessed   at the Hill Air Force Air Museum.
Let me break it down for you so that you can put it in perspective.
My son , Jack, is autistic.
Jack loves, and I mean LOVES, helicopters and airplanes.  They are endlessly fascinating to him on many levels.  So that day he had reached Nirvana, Vallhalla, and Heaven all rolled into one.  It was bonus points that the hangar was cool and not brightly lit.  That echo?  A big draw, too!

And that cool ( to the touch) concrete floor was the coup de gras on that hot summer day.
He laid down on the floor so that he could see the propellers from his favorite angle:
LOOKING UP.

And that is why he yelled (at the top of his lungs) the word FAN.
What he did next was a sensory thing.  The floor was cool and slick and perfect to push oneself across on one’s back.  If YOU were a severely autistic child, YOU probably would have done the same thing.
Really.
You would have.
And it would have felt AWESOME!
Jackson, at that moment, was deliriously happy.

Now, my 13 year old self really wanted to say to you in a snippy voice:
“take a picture, it’ll last longer”

The grown woman/mother in me really would have liked you to have at least try to catch my eye.  Perhaps smile.  Maybe raise an eyebrow.  Even ask, “Is he ok?”

But no.
You openly stared.
You stood there.  You frowned.
You stared.

I thought about offering up the phrase “He’s autistic” as a way of explanation.
But decided against it.

You were closed.
You were not open to any information as far as I could tell.
You turned smartly on your heel and walked away.
My guess is that when you went home Jack and I became a dinner table story.  A cautionary tale- perhaps a narration of bad parenting.

And you know what?  It’s OK.  It really is.
Because Jack and I know the truth– and we had a really great time.

Through Jack’s eyes……

I recently posted a picture of me on FaceBook.
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That’s me.
49 years old.
No make-up.  Waist length hair in braids.  A hat.
Relaxed.

In all my Facebook picture posting history, I don’t think I ever received as many likes and compliments as I did for that picture.

It’s funny to me how life’s experiences can brainwash you.
My entire life– through my family’s eyes– my pale skin has always been a detriment.
My childhood nickname was Caspar. THEY tan just by walking by a window on a sunny day.
Make-up was always pushed upon me.  As a matter of fact, my mother suggested I start wearing lipstick in FIFTH GRADE.  She lectured me that if I had color on my lips, then I wouldn’t look so sickly.  And so the school nurse would finally stop asking if I felt well.

But as years have gone by I have lessened the amount of make-up I wore–slowly but surely.
Today I can get my whole face on in less than two minutes:
Cover up under my eyes and a few spots on my cheeks.
Translucent powder to set.
AND- of course-
lipstick

(mac Verve
I have been wearing that shade for almost a decade.  No deviation.  It works.
Should mac ever decide to discontinue that shade, I’m gonna buy out all I can find!)

But looooooong gone are the days of monochromatic eye shadow schemes to match every outfit.
Of owning a make-up bag the size of a duffel bag.
Of changing my  make up look from day to night.

And I think about WHY.
What happened to me that all of THAT went by the wayside?

Well.  Time for one.
Who has time for getting THAT kind of face on before heading out the door?
And money.  My tastes run towards mac, Christian Dior, and Bobby Brown.  That stuff ain’t cheap by ANY stretch of the imagination .

And lastly…… I started being OK with who I was.  Little by little as each procedure of make-up fell away, I began looking at myself and thinking:
“Yeah.  I look all right”
What I have held onto– my pale skin and dark lips– has become what I define as “my style”.
And I embrace what was once undesirable.

BUT– this blog is- as always– about Jack.

If you will pardon my language, Jackson could give a rats behind whether or not my skin tone is even.
I don’t think he has ever judged me on whether or not my cheeks are perfectly sculpted.
And I am pretty sure he does not have an opinion whether or not my eyes are smokey or defined.

Jack cares that I am consistent.
Jack cares that I am kind.
Jack cares that I smile at him.
Jack cares that he can count on me.

My look, my perfume, my wardrobe are all inconsequential.
My actions, my intent, my love is all that matters.

And THAT my friends, is a pretty good way to look at others.