Unwritten

It’s been a difficult couple of weeks around here.  Tony is officially done with high school and we are taking a couple of days to process that.  On Monday he starts his “college orientation” (that’s what we’re calling it — because, logically, that’s what his big brother did) for his transitional program which he will be in until he’s 21 yrs old.  We are excited, yet anticipating change always makes for a tense environment here.  Although he’s ready for a new routine, sadness overwhelms me at times that high school is over for him and it just wasn’t ‘normal’.  I realize these are my issues, not his, as we stretch into the new routine, paving our way into the unknown.  Who knows where this will take him.  And like most high school seniors, his life is still unwritten.

I’m sharing some lyrics to one of my favorite songs from a few years ago.  Just heard it on the radio this morning and was just so appropriate.  Just another sign that the good Lord is speaking to me, telling me that it’s all going to be ok.  The song could be interpreted in many different ways — if you really stop to think about it.   Maybe it’s talking about our kids with autism and how they can’t get the words from inside their heads to their lips.  They can’t explain what they’re thinking.  They can’t ‘put it into words’…  “drench yourself in words unspoken”… that’s just how my Tony lives.  There’s so many words up in his head and so many conversations going on sometimes… yet he can’t converse.  I can’t imagine how frustrating that is.  Is he waiting for this to go away and be fixed?  or has he already embraced it and is “living his life with arms wide open”?

Maybe it’s talking about us parents — who’s futures are so undefined, unwritten.  It’s like the artist is saying:  go live your life.  Embrace it with arms wide open.  It is what it is.  It’s just beginning.  Go create your story.  No one else can do it for you.  Release your inhibitions – stop letting other things hold you back.  Stop worrying about what everyone else is thinking — just lay it out there and embrace it.  This is YOUR gift.  Go make it worthy.

And that goes for anything –  your job, the business you just started, your kids, your spouse or even your ‘self’ — or your life with autism. 

Below are the lyrics written and sung by Natasha Bedingfield. 
 
You can also click this utube link to hear it played: http://youtu.be/TtGY4G7II6s
 
 
“I am unwritten
Can’t read my mind, I’m undefined
I’m just beginning
The pen’s in my hand, ending unplanned
 
Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words
That you could not find

Reaching for something in the distance
So close you can almost taste it
Release your inhibitions
Feel the rain on your skin

No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips

Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten

I break tradition
Sometimes my tries are outside the lines
We’ve been conditioned
To not make mistakes, but I can’t live that way, no

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words
That you could not find

Reaching for something in the distance
So close you can almost taste it
Release your inhibitions
Feel the rain on your skin

No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips

Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
Feel the rain on your skin

No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips

Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words
That you could not find

Reaching for something in the distance
So close you can almost taste it
Release your inhibitions
Feel the rain on your skin

No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips

Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
Feel the rain on your skin

No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips

Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten

The rest is still unwritten…”

(Copied from MetroLyrics.com)
 
Just some thoughts playing in MY head…
 
Becki
 
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World Autism Awareness Day

Be sure to go to this website:  http://www.lightitupblue.org  and watch the slide show for breathtaking pictures of landmarks all over the world that changed their colors to blue for autism awareness.   Incredible pictures!

Signs and symptoms of autism:

1.  Has difficulty mixing with other children

2.  Acts deaf

3.  Resists learning

4.  Has no fear of real dangers

5.  Giggles and laughs inappropriately

6.  Is markedly overactive

7.  Resists change in routine

8.  Indicates needs by gestures

9.  Is not cuddly

10. Avoids eye contact

11.  Manifests inappropriate attachment to objects

12.  Spins objects

13.  Plays intently for abnormally long periods

14.  Has standoffish manner

**children may have some or all of these symptoms**

Thank you for helping me spread awareness… one reader, one household at a time.

Becki

The top 10 things to do when everyone else is on spring break

Seriously.  My neighborhood is deserted.  This is just not right.

So here are my Top 10 Things to do When Everyone Else has Fled the Cold:

10.  Get a manicure and pedicure — ask for the tropical package. 

9.  Catch up on your Facebook creeping.  Wear your sunglasses as a disguise

8.  Pick up the dog poo in the yard that has now surfaced from melting snow.  Wear shorts and sandals.

7.  Deep clean the oven in your bathing suit.  Feel the heat.

6.  Go to happy hour and order a Sea Breeze or Bahama Mama.  Bring your beach hat

5.  Drive with your convertible top down sporting mittens and a parka.  Wear sunscreen strictly for the coconut smell.   

4.  Color your gray roots.  Put a little lemon juice on there too, in case a sunbeam comes through the window.  

3.  Sweep the sand in the garage into a pile, put up lawn chairs, and light your Tiki lights from last summer.  Play “Margaritaville” loudly.

2.  Take a mental vacation.  Watch “Couple’s Retreat”.  It takes place in Bora Bora.  Sip a fruity cocktail. 

AND, THE #1 THING TO DO WHILE EVERYONE ELSE IS ON SPRING BREAK:

1.  Research destinations for next year’s spring break trip.  Book the sitter. 

~  That’s all I’m sayin’.   There is simply nothing like beach therapy.  I need to go to my happy place. 

Becki

 

Shine a light on Autism

Sorry for the lapse in posts…   we have had a tough week here.   I truly appreciate the emails and support checking in with me.  I’ll update you shortly.  In the meantime, I received this email from Autism Speaks that I wanted to share with all my loyal readers:

“Hi Friend,

The community we’ve built together has a powerful voice, and Autism Speaks annual Light It Up Blue event is our chance to use it.

On the evenings of April 1 and 2, 2011, prominent buildings around the world — including the Empire State Building in New York City and the Sydney Opera House in Australia — will turn their lights blue to raise awareness for autism and to commemorate World Autism Awareness Day on Saturday, April 2.

You’ve helped us provide much needed support and advocacy for individuals with autism and their families. Will you now help us light up the world for them?

Sign the pledge to raise autism awareness:

http://action.autismspeaks.org/thepledge

Small actions we take, like wearing blue clothing, featuring the Light It Up Blue logo on our Facebook profiles, and writing blog posts about how we’re participating in Light It Up Blue, can add up to a united movement. And our movement can hit every town across America this year — will you help us make our mark?

Sign the pledge today to help Autism Speaks Light It Up Blue this year:

http://action.autismspeaks.org/thepledge

Thank you for everything you do to help us — and each other.

Sincerely,

Mark Roithmayr
President, Autism Speaks”

Let’s rally together and show our support. Click on the link and spread the word.  We need to raise awareness!   🙂

Lighting it up blue for autism,

Becki

More Tonyisms

A typical conversation at bedtime:

“I’m sick for the school tomorrow,”  Tony announces as I tuck his weighted blanket in on top of him. 

“What about Rachel? She will miss you”,  I say smiling.

“He’s sick.”   (pronouns are still hard for him)

“SHE’S not sick, silly.  What about Michelle?  She’ll miss you too”

“He’s sick.”

“SHE’S sick”, I say —- yet again —–  as I correct him.

“YES!  He’s sick! Are you nuts?”   (a lovely phrase he now uses at all times when he doesn’t like what I have to say.  And now he’s testing my patience…)

“Well, what about Rob and Nick?”,  I ask.

“Sick. And sick.”

“Hmmm… Well, then… we can’t go to see Marni tomorrow.  That’s a bummer.”   (Marni cuts his hair – she’s very pretty — and he loves her)

(Long pause)

“How ’bout school?”   (I smile and leave the room)

(10 minutes later…)

“Mommy!  Mommy!  Can you hear me?”  he yells as he knocks on the wall.  (he only calls me Mommy when he wants something)

“Yes, Tony.  What do you need?” I say loudly through the wall.

“Good night, Mommy.  (pause)  Mommy?  Mooommmmy?  Come in here now, PLEASE!”

I get out of bed and walk in his room….   “Yes?”, I sigh

“Go see Marni?”  he whispers.

“Yes, Tony… We’ll see Marni tomorrow.  Go to sleep now”  I say shutting the door.

(5 mins later)

“Mommy?   Moooommmy?”  He says loudly as he knocks on the wall… again.

“GOOD NIGHT, TONY!”  I say with my best patient hat on.

“Good night, Mommy!”

This continues for a bit and he finally falls asleep. 

(I’m seriously considering some sleep medication… for ME!)  🙂

Becki

Tonyisms

Our Tony is famous in our family for creating his own expressions.    Since his language literally disappeared between the ages of 1 and 2, he has never really caught up — despite the triumphant efforts of many speech therapists, teachers and family.  How he has coped is by creating his own one or two liners — what we lovingly call “Tonyisms”. 

I’ll share some of these along the way, but yesterday’s made me smile.  Just thought I’d share it with you.

Tony was getting ready for the day in our bathroom yesterday, as usual, and I heard some rattling.  He came down to the kitchen carrying 3 light bulbs from the vanity. 

He hands them to me and proudly says, “The battery’s out!”

Ya gotta love this guy.

Becki

Beauty of Mathematics

This is something that will totally intrigue my Tony.   Watch and see.  Pretty fascinating!

http://www.youtube.com/watch?v=h60r2HPsiuM

Becki

 

A 22-year work in progress

Today is a special day.  Today Dave and I celebrate 22 years of marriage.  I just wanted to take a minute to let you know about my husband, who is the silent partner of this blog.

Back in 1995 when Tony was first diagnosed, one of the professionals working on Tony’s program told us that most marriages with a special needs child, will end in divorce.  It’s usually too stressful, financially devastating, and most of the time the couple will disagree on discipline strategies or therapies. 

Geez… thanks for the head’s up.  Any other good news?

I remember having this conversation with Dave shortly after hearing that Tony was diagnosed with PDD-NOS:  Pervasive Developmental Delay-Not Otherwise Specified.  (which, by the way, I could not accept as “autism” — another story at another time) Dave was the one with the level head and the one to go to the library and research the subject.  I, however, cried for weeks.  In fact, if my memory serves me right, I even threw a book at him that he brought home for me to read called “PDD-NOS and the Autism Spectrum”, screaming “OUR SON IS NOT AUTISTIC!  HE IS NOT RAINMAN!”

Dave is the one who listens to me day in and day out with my ideas, plans, therapies, research, and frustrations.  Dave is the one who encourages me to write.  Dave is the one who sees me at my lowest points, yet still manages to get me to laugh. 

Although these years will go down silently in our own family’s history books, what I want the world to know is that I could not have gotten through it without Dave.  We make a fantastic team.  Maybe that’s why we were destined to meet all those years ago — at a bar named Champps.  It still amazes me how God could send me someone so perfect for this job.

Has it been easy?  Of course not.  No marriage is.  Do we agree on everything we do for Tony?  Not for a minute.  Do we try to hear each other’s opinions?  Most times.  Do we have a long road ahead of us?  Absolutely. 

I think what has gotten us through these 22 years is that we surround ourselves with loving family members and close friends.  We have THE best support system a couple could ever ask for.   For that, we are eternally thankful. 

We had no idea what was in store for us, no one ever does.  But nonetheless… I’m still praying for more of the same.    

                                                                                                                                

Happy Anniversary honey,

Becki

To the mom in the waiting room…

I want to apologize to the mom in the waiting room.  I took Tony to the doctor this morning to have his ears checked — yet again.  We just finished a round of antibiotics for a severe ear infection in his left ear (yes… he still is plagued with ear infections at age 17… not as often, but when they come, it’s always severe) only to find out it’s hit his right ear. 

A trip to the doctor is no picnic.  Not only does Tony sometimes forget his “inside voice”, but he has ZERO tolerance for crying babies or whining toddlers, or screaming 4 yr olds.  We love his pediatrician, and know that next month he turns 18 yrs old, but I just can’t make a change right now.  Not yet.  There’s just too many changes going on this year for him.  We’ll tackle that later this fall.

So we’re walking into the building — and mind you it’s incredibly cold outside — and Tony is dragging his feet, taking his time, moping.   Just like a typical teenager.  No time schedule.  No sense of urgency.  No enthusiasm.  He only keeps telling me that his right ear is “burning”  (which is a new word choice for him — I’m happy with that, but I’m running late).   Down the hall he goes and he decides to speak in an unrecognizable foreign language, and in a very loud animated fashion with hand gestures and songs, to everyone who passes by.  It just so happens to be a very busy day at the Dr.’s office.   Heads turn — some stare, some frown and some giggle. 

“Come on, Tone – let’s hurry!”, I say as I’m grinding my teeth with a smile.   I know he’s testing my patience — yet again.  Then I heard it.  I heard a toddler in the waiting area.   He’s screaming at the top of his lungs.  My Tony — all 6 foot, 190 lbs of him — runs down the hall to the toddler with his hands over his ears yelling “STOP SCREAMING!!!  KNOCK IT OFF, PLEASE!”  And then added some of that unrecognizable language. 

I thought the little boy was going to cry, but he looked WAY up at Tony and all he said was, “K”.  

I was devastated – but I’m used to it – and wanted to apologize to his Mom,  but by the time I redirected Tony and calmed him down, she was gone. 

What is it about that pitch that bothers him so much?  I’m sure it like any unexpected noise or anything that startles him, but he’s so darn sensitive to that.  And how is that avoidable?  It used to be an issue — then I thought he grew out of it — but now it’s back.

That’s another thing about autism.  You can teach him a skill like riding a bike or tying his shoes right on schedule, but down the road he may lose it.  Why is that when other things, like dates and historical facts, are permanently filed in his brain?

I guess that’s just another piece of the puzzle. 

As the nurse called our name, she smiled and said, “What language are we using today, Tony?”  

“Hebrew”, he said. 

Go figure.

Becki

Attitude

I am humbled by the response from my last blog post, and I have gained many new readers.  Welcome!  I’m so glad you’re here! 

We’ve had a few rough days here… no particular reason (except a full moon?).  I have this nagging headache that won’t go away, and I know what it is.  Worry.  Frustration.  Fear.  Sometimes this autism thing can really burn you out, but as I sit at my computer tonight, I couldn’t help thinking of my favorite quote:

The only disability in life is a bad attitude

I quote that to myself many times during the day.  It’s SO true.  Attitude can make or break your day, your life, your future.  One of the things posted in my office keeps me grounded.  I’d love to share it with all of you:

“The longer I live, the more I realize the impact of Attitude on life.  Attitude, to me, is more important than facts.  It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do.  It is more important than appearance, giftedness, or skill.  It will make or break a company… a church… a home.  The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day.  We cannot change our past… we cannot change the fact that people will act in a certain way.  We cannot change the inevitable.  The only thing we can do is play on the one string we have, and that is our Attitude.  I am convinced that life is 10% what happens to me and 90% how I react to it.  And so it is with you… we are in charge of our Attitudes.”   ~ Charles Swindoll

I hope this helps you as much as it has helped me today… and many days in the past. 

“Grant me patience for all my blessings…”

Becki