The unspeakable

Like many, I have been trying to find balance in my life since the Sandy Hook shooting.
It’s Christmas and suddenly the blatant consumerism and garish decorations seem grotesque and absurd.

I want to write, but feel my words can do no justice to how I feel – or to the lives that were taken in such a horrific way.

I will , however provide you THIS  link to a blog I follow.
It is written by another parent of an autistic child.

And I cannot say it better than he did.  Please read.

Oh…..and by the way?
His son’s name is Jack.

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What’s in a Name?

Let me  just put this out there:
I have always hated my name.

My given name is Tina.
It is NOT Christina, Albertina, Bettina or anything else other than TINA.
And to add insult to cliche injury, my middle name is Marie.

Find a woman with the name Tina and dollars to doughnuts sez her middle name is Marie.

So………….. WHY do I hate my name?
When I was little I always thought it was a “fancy” “girlie” name.  I don’t know why. Unlike other little girls, I was not into things fancy and girlie.  I have always been quite pragmatic.  I thought, when I was little , that the name “Dorothy” would be a good name for me.  It sounded sturdy.

Now here is the part of the story where I let you in on a little secret:
Mine was not an idyllic upbringing:
There was neglect.  There was abuse.  There were secrets and things NOT talked about by the light of day.

It was no secret, however,  that I had a very low birth weight.  It’s right there on my birth certificate that I weighed just under 4 pounds.  No, I was not a preemie.  Yes, I was jaundiced.  It was a story told over and over about how it looked like I could fit in the palm of one’s hand at birth.  And THIS is how I got my name.   Had I been a normal birth weight, the story went, then I would have been named Kathy. But I was TINY.  Hence the name, “Tina”.  Teeny Tiny Tina.  Get it?

yeah.  its a hoot, isn’t it ? (this last should be written in the sarcasm font, but my computer doesn’t have that.)

Flash forward a few years to a particularly nasty fight between my mother and I.

Well.  To be fair, I think SHE was doing most of the fighting, I was dodging verbal slashes and nasty remarks.
During this argument it came out that the reason for my low birth weight was that she tried to miscarry me by throwing herself down the cellar stairs. I was not wanted.
She only succeeded in damaging the placenta, hence the low birth weight.

Now, my oldest brother, whom I love dearly and would have been 7 or 8 at the time, says this is not true.
That he would have remembered it.  That it is only a story my mother made up to hurt me.
I say: either way, the effect is the same.

And so I hated my name.  I thought for a while that I would change it– but what a mess that would be!  Not just the legalities, but the pretension behind it and explaining why and blah blah blah.
When I did theater, I smooshed my names together so I became TinaMarie.
Still…….meh.
Thankfully, a slew of nieces and nephews came along.  It was found that saying “Aunt Tina” can be a little troublesome for young mouths, and so I became “Aunt T”.
T?!
Ooooooooooooooooooooooh yes please!! I LIKE IT!!!
T.
yep.  I go by T quite alot.  and I like it.

But this is a blog about Jack, isn’t it?
Ah, yes, Jack.
Jack  loves to say certain words. He plays with the sounds and the shapes of the letters.
When Jack says my name he says : “Teeeeeeeeeeeeeeeeeeeeeeeeeena” or “TEE-nuh!” .
Sometimes, if he is urgently wanting chips it’s “TinaTinaTinaTina Teeeeeeeeeeeeena”
But  it is ALWAYS said in a sweet tone.  Never a reprimand.  Never anger.

And so, Jack has given back my name.
Jack has made it so I can hear it, accept it, and answer to it without anger or hurt in my heart.

After all…………..What is in a name?
Listen to THIS and you’ll know it’s love.

Post Thanksgiving

You would have thought that I would have done a big old “blah-blah-blah-Blog” about how thankful I am this holiday season….etc etc etc ad nauseum.

I just couldn’t bring myself to do it.

You know why?  Because each and every day I have something to be thankful for.
And I remember to be thankful EACH day for those small (and not so small things)-

I am thankful for a day/week/month with no seizures.
I am thankful when there is no traffic leaving school so Jack doesn’t get upset.
I am thankful for non rainy days so Jack can be outside.I am thankful for DVD’s that don’t have 10 minutes of previews before the expected show.
I am thankful for the co-op putting those gluten free high end chips on sale.
I am thankful for those small moments of awareness when Jack makes a connection.
I am thankful for laminate floors that make cleaning up fuzzball mess much easier than carpet.
I am thankful each day for continued health and learning.

I am grateful and thankful for a daughter who rises to the challenge each day– who can spot a seizure, stem a temper tantrum,  doesn’t mind being a slinky holder or a partner on the bounce-poline, and loves unconditionally.

I am thankful and grateful for a husband who seems to have super-powers– who works, loves, balances, teaches, shops, cooks, and MORE with his eye on the big picture of FAMILY.

And I am thankful for my family.

Last Thursday was about ALL of that and a truly bitchin’ turkey dinner.

Full Disclosure

A good friend of mine advised me when I started this blog that it was not only about JACK, but about myself as well.
So….
I guess it’s time to come clean.

I am NOT Jack’s mother.
That is to say:
I did not give birth to Jack.
Someone else did.  And she is no longer in Jack’s life save for a few emails every couple of weeks to ask after him.

When I first met my husband, there was a lightening bolt/ground shaking awareness that THIS was going to be THE ONE.
We had a recognition.

It never occurred to me during the courting process or the future planning stages to NOT let myself fall deeper in love based on the fact Clay had a special needs child.  I’ve been oohed and ahhed over for “taking so much on”  and for “stepping in” .
Pffffffffffffft
I fell in love with a man.  He had this child.  You don’t step away because it looks too hard.

And so I threw myself into it. I read up on autism.  I learned about TS.  I saw seizures and nursed Jack afterwards.
I administered meds.
I proceeded with love, caution, and compassion.
I gained Jack’s trust first, then love.

Jack doesn’t call me “mama” or “mother”.  He calls me  “Teeeeeeeeeeeeeeeena”.
His sisters he calls “Darrrruh” and “Seruhfeena”.
Clay he calls “daddy”.
There is no familial emotion behind the “daddy” for Jack.
That is to say for Jack, Clay is “daddy”- it is his name– it doesn’t have the same meaning behind it as it does to you or I- he could as just as easily call Clay: “spinning”
That is NOT to say, however, that our names do not get said with love and joy.
Because they DO.

Oh hey….
and I just went to Dictionary.com and surprise…
Looks like you don’t need to birth a child to be a mother.

But then again, I am very happy to be “Teeeeeeeena” in Jack’s life.

 

 

THAT word

Today, in internet land I posted a comment on a FB page stating that I would NOT join the “let’s all get behind Papa John’s pizza” deal and “boost the economy” by buying said pizza
My reason, I stated, was:
I refuse to support a company that claims Obama is making it hard for them to make any money at all therefore cannot give their employees proper benefits, BUT they can afford to give away two million pizzas.

I thought it was pretty sound reasoning.
And it is documented all over the interwebs.
AND…well, I stated it nicely with no name calling.

THIS was posted after it:
Give away pizza? Are u a retard? Another liberal who doesn’t understand.

yeah.
THAT word.

I asked the person, very nicely to consider the use of this pejorative, as name calling is not productive.

His response?

Tina I don’t care what you want and you can take that to the bank. Retard is a word in a dictionary and was the acceptable term until libs decided it wasn’t.

Oh so compassionate and clever, don’t you think?

While I DO understand that this word is INDEED in the dictionary, it should be used in a way so that it is a VERB

Take note that is is NOT used as a noun until #4

4.Slang: Disparaging .

a.a mentally retarded  person.
b.a person who is stupid, obtuse, or ineffective in some way: a hopeless social retard.
I do not identify myself as a liberal or “lib” as this internet troll claims.
I do not usually identify myself as any one thing-
except, perhaps ,compassionate.
I do not think “libs” ruined the use of this word.
I think this word is used as a last bastion of those without an argument.
And……while Jackson may not care about the use of this word, I do.
He may be developmentally delayed
He may be brained damaged.
He may even BE “retarded”But I can guarantee you that he has a kinder heart than the person who insulted me today using that word.

And to paraphrase the troll….
I’ll take THAT to the bank.

Resistance is Futile

The all knowing omnipotent “they” say there are two certain in life:
death and taxes.

I would humbly add to that :
My inability to not be  a clutterbug
andThe constant presence of Lego’s and gears on our floor.

I went to a new friends house the other day.  It was amazing.  Well decorated.  Clean.
And no piles of “things” anywhere to be found.
And no indiscriminate small part toys on the floor or lurking in corners. (I checked!)
There were also no random cheerios or chips pieces anywhere to be found.
No errant threads or fabric scraps lurking about!

You know, what with him being brain damaged and developmentally delayed-I’m gonna’ go ahead and give Jack a pass this go around.  He throws thing for the sheer joy of watching their arc and seeing them spin.

Me?  There is no excuse.  I have an “I’ll just stack it here until I can get to it” mentality.
I am loathe to throw out any piece of fabric, ribbon, or doo-dad that I perceive can be useful in some unforeseen time.

Maybe I should just take a tip from the boy and throw it all away…..

joyfully, with glee, for the sheer joy of letting it go……

hmmmmmmmmm

I’ll get back to you on this.  🙂

What does it mean?

Every night, as I walk into the bedroom with Jack he does something that annoys the heck out of me and I can’t seem to make him stop.
He knocks over the plastic laundry hamper that sits next to the bed.
It is not a violent motion.  It is not a malicious moment.
It is just a “hey, there’s that thing…..I need to tip it over” matter of fact motion.
Sure.  I could move it.
But there is really no other place to put it.
As he climbed into bed last night, after tipping over the basket, I got to thinking about his routines.
And somehow it occurred to me that this has a purpose for him.
Whatever it is…..I am not sure WHAT it is….
but it is part of his going to bed…..
He sees me close the door.  Turn on the sleep machine.
Pull back the covers.
Perhaps this is HIS contribution.

I am going to focus on being less annoyed.
And see this through Jacks eyes.

Wish me luck.  ❤

Understanding

Before we go any further, I want to tell you what I DON’T want this blog to be about:

Pity.
Sympathy.

I am not rolling my life out with Jack to elicit comments about how strong I am or what a great job I am doing etc etc. I appreciate those comments….but that’s not what I am after.

What I AM after– for ME, for Jack, and for all those other warrior parents and children out there is

UNDERSTANDING.

The average person walking by us in the grocery store, the Costco, or on the street may see just one minute of our life and make a snap judgement about what it is.
Please: Don’t.

You may see a child drooling, staring, stimming, or any other number of what you perceive to be “odd” behaviors.
You may hear noises and sounds that don’t sound too happy or melodic–to YOUR ears.
When you see us and you stare…..
Please have the courtesy to smile.
That downcast look doesn’t help.
We don’t pity ourselves or our children.
The downcast look with a quick turn away because you were embarrassed to be “caught looking” doesn’t help.
We are not embarrassed to be with our child.

If you have questions about their condition or behavior–ask.
But, please — ask nicely, and have respect for the answer.
Ask after our children just as you would ask after any other child you see out in public.
We have trials and tribulations,  joy and milestones to celebrate like everyone else.

That’s  just MY two cents on  this stormy Friday afternoon.

It’s the Great Pumpkin, Jack!

It’s fall.
The air is crisp and clear, there is a smell of burning leaves in the air and Halloween is on most everyone’s mind.
Recently the first grade class I work in — along with all the other first grade classes took the exciting trip to —
TA DA!
THE PUMPKIN PATCH!
Getting 80 first graders onto a bus and out into a field is a bit like herding kittens.
The trip there was noisy, hot, and not without reprimands to stay “bottom to bottom, back to back and hands in your lap”.
The kids were hopped up on excitement and getting out of the regular routine.

I- along with the teachers on this trip- was ever alert for the kids safety on the bus.
Once we got to the pumpkin patch it was controlled chaos- this class goes here, that class goes there….
Here’s the rules for picking your pumpkin…..
MY student that I work with had a little challenge.  he was told we were going to the pumpkin patch and getting a pumpkin.
He did not care about the presentation in the field about the types of pumpkins
Or the history of the farm
Or the history of the area.
he cared about:
LETS GO GET A PUMPKIN.
once we were let loose– he found a pumpkin and then was eager to go.
Why wait? We got our pumpkin– lets go!

Now, on another day-Jack’s class went to the Pumpkin Patch too.

Let me tell you about Jack and Halloween.
In a nutshell? He doesn’t care.
Dressing up means nothing to him.  Candy means nothing to him.
The idea of a PUMPKIN being associated with it means nothing to him.

This is what that trip meant to Jack:
He got a bonus ride in car– during school hours!
he was pointed to a field with heavy orange balls he was not able/allowed to throw.
And another bonus car ride  back to class.

His teacher, his aide AND the bus driver all sought me out after that trip to tell me that Jack had such a good time on the bus–He was so happy to be riding in the van.  So happy to be out.

And I thought about that.
Jack had no care about where he was going

or what he was going to do once he got there.
He was just enjoying the ride.

I think I need to remember to do that, too.

 

Mrs. Carver, what’s wrong with your boy?

Last year I began working in a kindergarten class as a one-on- one aid for an autistic student making the leap to the “typical” classroom.  It was a great learning experience for all involved: ME, my student, the other kindergartners, and the teacher.

It was also a blessing to have this job since my son attends school at the same facility in a special day class.

Now, as I was leaving one day– Jack in hand, navigating amidst the throngs of parents, students, teachers, and ankle biters galore, one of the children in my kindergarten class asked:

“Mrs. Carver? What’s wrong with your boy?”

I stopped dead in my tracks for a moment.
THIS could be a great time to educate a young curious mind
THIS could be a great introduction of special needs to this student
THIS could be an “Aha!,” teachable moment for a child to come to a better understanding of the world around them.

nope.

Let’s face it.
Jack and I were having none of it.
Like salmon swimming upstream, once he is on a mission to go someplace, we must GO.
We were in a mass of humanity all hell bent on getting outta school.

So I looked at this adorable little cherub and said, quite sweetly,  “Nothing”.

And before you pull me up short for telling a little white lie– DON’T.  I told the absolute truth….. as I saw it.

You see, despite his lopsided gait, his waving his fingers to see shadows, and his chanting of a little song that goes ” a nu anu a nu anu a nu anu” — there was NOTHING  “wrong” with him at that moment.
He was just like any other kid wanting to go home and watch cartoons.  Or play in the yard.

And I went home and I stewed.  And I thought.  And I pondered.
How does one really answer that question and make it fair to ALL involved?
When a five year old asks……When a coworker asks…..when a random person in the check out line asks…
The answer is both simple AND complex.

Is it enough to say “He’s autistic”?
I mean, the range of autism out there is mind boggling.
Should I add: “oh, he has about 30 tumor like growths on is brain”?-
THEN I have to explain that no….they are not cancerous, blah blah blah.
Do I bring up the brain damage from febrile seizures as an infant?!?!

WHERE does it end? Where does it begin?
How do you DEFINE a child like Jack?
He is NOT his medical charts.
He is NOT his diagnosis.
He is NOT the tubers that grow in his body.

He is Jack: A boy that loves to be outside on the “bounce-po-line”, who loves to watch bubbles and spinnings in the wind.  Who likes to play with slinkys and thinks its the best fun to throw every single Lego in the house from one room to another.
He is a boy that delights in Elmo, Little Bill, Miss Spider and Maisy.
He is a prankster.  He is a lover of shadows and light.
He is the benevolent tyrant that rules our home.

He is Jack.
And even though some things aren’t right with his health……
there is nothing wrong with him.