A Holiday Message

I have been meaning to write a new entry– really I have.
And then for some odd reason THIS ENTRY of my blog has been getting renewed attention.

It started as a FaceBook note on my private page…..then morphed into a blog entry.
It speaks of routine.  It speaks of family.  It speaks of consistency and sacrifice.
More importantly, it speaks of uncompromising love.

And so, it led me to reflect on the past  two and a half years of writing about my life with Jack.

Through Jack’s page on FaceBook I have met many a righteous parent, child, grandparent, activist and TSC warrior.
We have shared love, support, empathy, understanding, and anecdotes.
We have rejoiced together over our children’s triumphs, and commiserated over the setbacks.

And so to all of you parents out there this Christmas…..
be you the parent of a special needs child , or not
be you the birth parent, or the step parent, or the parent of the heart
I say to you:

Thank you.
Happy Holidays
Take a deep breath
Let it out slow
Smile.

You’re doing great and we’ll get through this together.

The Holidays are rife with warmth and love, the New Year brings the promise of renewed energy.

I thank you all for your love and support.

with love,
T and Captain Jackstastic

Advertisements

Dream a little dream

As far back as I can remember I have been a very vivid dreamer.  I can still remember dreams that I had as a child in exquisite detail and feeling.
Some dreams leave me exhausted; others, exhilarated.
In my dream state problems get worked through, stress gets relieved, events get relived, and sometimes desires get fulfilled.

I recently had a dream about I child I had worked with and whose mother founded a local autism support group.

Caden is a ridiculously beautiful boy whose dx includes Fragile X Syndrome and autism.  (You can read more about him HERE as his mom has also guest blogged for me!)

In my dream a handsome young bespectacled man in a pinstripe Oxford clothe shirt approached me and asked me if I had ever worked in the PALS program.  ( an early intervention program here in Humboldt County.)  I replied that I did and he informed me that he was Caden, the little boy who used to sit and endlessly flip through pages of books.

At once the knowledge of how far this child had come and who he was now was like a huge weight lifted off my shoulders and the world in general.  In my dream I began to weep.  Tears flooded my face and my body was wracked with sobbing as I became overwhelmed with emotion.

From behind me I heard Clay and Jackson (also grown) laughing at me in a good-natured manner because I always get “so emotional”

I awoke from this dream with a renewed sense of passion and hope.  These children– ANY special needs child– need the constant hope of potential– the solid foundation of belief.  Our children need to be seen as unearthed treasures.  We need to forage and mine, dig and discover the beauty of who they are in this moment, as well as who they can grow to become.

It sounds so simple and chock full of common sense, doesn’t it?
But it’s not.
Routine can wear us down.
Setbacks can wear us down.
The sheer weight of what is needed to be there 100% day after day can wear us down.

So I invite you all to take a break.  Take a nap.
Regroup, recharge and rediscover that hope.
Focus on the beauty of the moment– the unique gifts and talents YOUR child possesses.

Dream of little Dream of beautiful future.

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

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.

photo 2 (2)

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

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

 

 

 

 

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.

Happy Every Day

So April 2 was not only Autism Awareness Day….
It was Jack’s birthday.

I have mixed feelings about BOTH of these events.

We pondered having a birthday celebration for Jack, but decided against it.
Why?
Because it would not be for Jack.
It would be for US.

Like most other celebrations, it has no relavance, no meaning to Jack.
To understand a birthday celebration, one must understand construct of time, the passage and the milestone aspect.
You may argue:
but he’s a child and ALL children love presents, cake, ice-cream, and celebrations.
And you would be incorrect.

Jackson is quite at peace with himself.  He finds joy in small things.
He does not like to be forced to DO anything.
And we save that for learning/teaching experiences.

And WORLD AUTISM AWARENESS DAY?
meh.
We are aware.
We’d like acceptance more than awareness…..

But still I am not here to force an agenda on anyone.

So lets get back to the celebrations.  I thought long and hard about Jack’s birthday and what we should do.  A traditional birthday party wouldn’t really work.  And who would we invite?  And forcing Jack to open gifts? Not his cup of tea.  No….it would definitely be for US, not Jack.

Let me try to get it across this way:

I am not a male.  Nor am I Jewish.  Nor am I 13.
But if someone came along and said:
“Hey! We are celebrating your Bar Mitzvah!”
And pushed me through all the steps.
And made me repeat words.
And  walked me through it….
I wouldn’t know what the heck was going on, it would bear no relevance in my life, and it would probably annoy the heck outta me.

This is how I see us forcing a celebration onto Jack’s day to day routine.

Instead……we celebrate Jack every day.
We celebrate the large and small.
We celebrate eye contact.
We celebrate communication.
We celebrate seizure free days.

And THAT, my friends, is more important than any artificial construct and sugary treats.

 

 

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.