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
 

A Different Ability

I sit in my newly cleaned office, listening to Tony through the ceiling.  He’s reciting a movie, word-for-word, and having a ball upstairs.  The feelings I have are so extreme.  One minute I’m laughing with him, and the next my thoughts are wondering off on how others his age are getting ready for prom, and senior skip day, getting jobs and choosing colleges.  It’s bitter-sweet, as I sit here totally entertained by his Hollywood performance. 

I ran across something that has really helped me over the years and I thought I’d share it with you all.  It’s incredibly insightful and I hope it helps you all understand more about autism.

(Taken from “10 Things Every Child with Autism Wishes You Knew” by Ellen Notbohm)

I am a child with autism.  I am not ‘autistic’.  My autism is only one aspect of my total character.  It does not define me as a person.

My sensory perceptions are disordered.  This means the ordinary sights, sounds, smells, tastes and touches of everyday life that you may not even notice can be downright painful for me.

Please remember to distinguish between won’t (I choose not to) and can’t (I’m not able to).  Receptive and expressive languages are both difficult for me.  It isn’t that I don’t listen to instructions.  It’s that I can’t understand you.  When you call me from across the room, this is what I hear: #$%^&*.  Instead, come speak directly to me in plain words.  “Please put your book in your desk, Tony.  It’s time to go to lunch.”  This tells me what you want me to do and what is going to happen next.  Now it is much easier for me to comply.

I am a concrete thinker.  I interpret language literally.  Idioms, puns, nuances, double entendres and sarcasm are lost on me.

Be patient with my limited vocabulary.  It’s hard for me to tell you what I need when I don’t know the words to describe my feelings.  I may be hungry, frustrated, frightened or confused, but right now, those words are beyond my ability to express.  Be alert for body language, withdrawal, agitation, or other signs that something is wrong.

There is, however a flip side to this:  I may sound like a little professor or a movie star, rattling off words or whole scripts well beyond my developmental age.  These are messages I have memorized from the world around me to compensate for my language deficits.  I don’t necessarily understand the context or the terminology I’m using.  Because language is so difficult for me, I am very visually oriented.  Show me how to do something rather than just telling me.  And please be prepared to show me many times.  Lots of patient repetition helps me learn.  Visual schedules, day planners, and other visual supports are extremely helpful as I move through my day.

Focus and build on what I can do rather than what I can’t do.  Trying anything new when I am almost sure to be met with criticism, however constructive, becomes something to be avoided.  Look for my strengths and you’ll find them.  There’s more than one right way to do most things.

Help me with social interactions.  It may look like I don’t want to be social, but I may not know how to start a conversation or enter a situation.  If you can encourage other children to invite me to join them I may be delighted to be included.

Try to identify what triggers my meltdowns.  This is termed “the antecedent”.  Meltdowns, blowups, tantrums, or whatever you want to call them are even more horrid for me than they are for you.  They occur because one or more of my senses has gone into overload.  If you can figure out why my meltdowns occur, they can be prevented.

If you are a family member, please love me unconditionally.  Banish thoughts such as “if he would just…” and “why can’t he…?”  You didn’t fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it.

It all comes down to three words:  Patience.  Patience.  Patience.

Work to view my autism as a different ability, rather than a disability.  Look past what you may see as limitations and see the gifts autism has given me.    

Words to live by…

Becki

Just making some new friends

A “blog hop” is a way for other bloggers to meet up and follow each other.   Feel free to check out any of the blogs who comment below also ~

Published in: on March 31, 2011 at 10:52 am  Comments (1)  

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

 

Tony turns 18

It’s always hard for a parent to celebrate milestone birthdays with their kids — like turning 18 yrs old — because deep down, we still see them as our adorable little munchkins.   It would be so wonderful to be able to scoop him up in my arms, squeeze his cheek next to mine in front of the mirror and say “Who’s so handsome?”  —  “Me am!”  he say smiling proudly. 

Except there will be no scooping up a 190 pound- 6 foot- 18-year-old this year. 

Instead, I had asked Tony months ago to think about what his 18-year-birthday-wish would be.  And I would try hard to make that wish come true.

Tony turned 18 yrs old on St. Patrick’s day.  We’ve been talking about it for some time now, and his anxiety was climbing.  He was so excited to wake up that day.  He rushed into my bathroom and looked straight into the mirror saying “Bigger?”   He shower, shaved, and got all dressed up in green.  I love it when he understands milestones.

His wish this year was as simple as last year.  He only wanted one thing.  He wanted to go stay at a hotel.  AND he wanted to bring Beau.  

Simple, right?  Well… kind of.

It took a few phone calls to find a hotel that not only accepts pets — but one that would accept our 100 pound lab!   We found one not too far from our house.  I booked two adjoining rooms, so Tony feel grown up and independent.  I also wanted to make sure he had his own space to set up his DVD’s and books, and have his snacks,  yet not be disrupted by any outside noises.  It was just how he liked it.  A perfect night.

Beau settled in pretty quickly — he got a little TOO comfortable, as you can see.   But all in all, it was a great night.  Just Tony, his dog, his family (in the next room) and his new DVD collection.   And as requested, we picked up Don Pablos chips and salsa, a chicken fajita, popcorn and a gluten-free chocolate cake.

So while Tony and Beau settled into their own room to watch his new World War I, World War II, and Classic Hollywood DVDs, the rest of us were in the adjoining room watching a Harry Potter marathon.  What a great way to spend a Saturday night together… well, kind of together.  🙂

Becki

St. Patty’s Day just won’t be the same

We lost Tony’s Grandma Pat on Feb. 28th to what we believe was literally a broken heart.  As you recall, Grandpa Gene died last September and we were so proud of how Tony handled the funeral and his death.  Just five short months later, Grandpa Gene’s wife of 55 years joined him in heaven.  Grandma Pat had a heart attack while attending Mass that Sunday morning.   Looking back we can now see the signs that her heart was failing – in more ways than one. 

It’s a beautiful story, actually.  Grandma Pat had started to tell us that she was talking to Grandpa Gene.  That she would dream about him, talk to him, and then finally she was “seeing” him in the living room.  He had come for her.  And I truly think that her heart was so lonely for him and the life they had, that she was ready to go with him.

Patricia Catherine Hanna Becker was “100% Irish”  — and very proud of it!  I’ll never forget the day our Tony was born.  She couldn’t have been prouder.  Tony (Anthony Patrick Becker) was born on St. Patrick’s Day 1993, and I believe my mother-in-law was in our room about 2 minutes after he was born bearing all things Irish.  🙂   

Having just been through the funeral experience, Tony was once again a trooper.  We had a private viewing for him and he was so very sad.  You can see by the picture below that he had a very serious look on his face.  He understood he was saying goodbye forever.  We celebrated her life with a theme of green and even made sure she was wearing her shamrock socks. 

Later that week, I found Tony reading this in one of his Book of Saints:

“Why a shamrock?

St. Patrick used the shamrock to explain the Trinity, and has been associated with him and the Irish since that time.

St. Patrick was a humble, pious, gentle man, whose love and total devotion to and trust in God should be a shining example to each of us. He feared nothing, not even death, so complete was his trust in God, and of the importance of his mission.”
St. Patrick

We’ll miss you, Grandma Pat…  and we promise to carry on your wishes and to ALWAYS celebrate all things IRISH!

In loving memory:   Patricia Hanna Becker 

                    April 23, 1934 – February 28, 2011

Becki

The wonders of Para’s

As I was digging through a closet last weekend, I happened upon a large stack of notebooks that literally took my breath away.  They were all from Tony’s elementary school years.  One of the best communication tools we used back then was notebook that would travel with Tony to and from school.  His para-professionals (or paras, as we lovingly call them) would write me detailed notes of Tony’s school day, since Tony could not communicate that with us.  Back and forth it would go, filled with the good, the not-so-good and even the very bad things that happened each day. 

To say that this was important to us, is an understatement.  This was the only way we could have an insight as to what was happening at school and how Tony was progressing.  It took patience and dedication from these awesome paras to take the time, during what I’m sure was a very hectic day, to write a note to us.   I looked forward to it every day — and I always wrote back.   (Now, in 2011, it’s an email or a text to his paras and teachers)

The nice thing about the notebooks is that I have a slice in time that I can look back on and remember.  I always say that I have a “gift” of being able to forget the stressful times and move on.  I’m sure I haven’t forgotten them, but I’m just able to put them aside and move on to our next adventure.  It’s the only way I can do it.  Somethings I don’t want to recall — but others I do.  It’s nice to see all the progress we’ve made over the years, still knowing there’s so far yet to go. 

Here’s the very first page of his 2nd grade notebook.  (Keep in mind, back 10-11 years ago, autism was not in the spotlight or as common as it is now, sadly)

“Tips for Tony:

1.  If watching a video, Tony likes to watch and listen to the VERY end.  He will get very upset if the video is stopped — or done so without warning.

2.  Tony loves the computer.  It is a good calming tool. 

3.  A good technique for Tony is:  “First _________, then _________”  i.e. “First math time, then recess!”

4.  Tony may need a few verbal cues before cooperating.  He can not “read” social cues, but will mimic someone who is upset or happy.

5.  Tony needs and seeks out big, strong hugs for approval and acceptance.  Also good for calming.

6.  If overstimulated or overwhelmed, Tony may lose his cool.  Be firn and stay calm.  He is learning to calm himself.  He will feel bad about it after, and may need some physical time – i.e. swinging, jumping, running

7.  Last year, they used PECS (picture exchange communication system) to help him learn his schedule.  If something will be changing, just give him verbal warnings — “Today is going to be different, Tony”  🙂

Another entry — 9.22.00

“Dear Becki and David,

     I want to tell you how wonderful Tony is!  Every day, we are seeing progress.  He is adapting to schedule changes throughout the day, answering questions with yes or no, sitting quietly in a large group, making eye contact when Mrs. J is speaking… the list goes on and on…  He makes us smile all the time!

    I want to commend Mrs. E. for caring for Tony so much! She is dong a wonderful job mainstreaming Tony into the regular ed. classroom.  She works very hard to make each day go smoothly!  Gracias, Mrs. E.!!  (this is the year Tony learned to speak Spanish – Mrs. E. was  bilingual)  You are appreciated!!

Mrs. S.”

I believe I cried when I read that.  We were struggling so hard in those early years just to get Tony to cooperate and just “be” in our world. 

My wish is to find all of Tony’s paras from all his years in school (including early intervention at age 2) — 1995 – 2011 — and express my thanks to each and every one of them.  We could not have made this journey without them!  We know just what a little stinker our Toneman can be and we know that your job was not easy.   Rewarding?  yes.   Easy?  not for a minute. 

As we come to the last few months of Tony’s high school days, I can’t help but wonder how lucky we were through the years to have such great paras.  If you are reading this, and you’re one of them… God bless you.  We thank you for your dedication to our Toneman. 

Becki

You can see by this picture, just what a little stinker he was (and is)! Tony - 10 yrs old - 2003

 

A New Year

“It’s not how heavy the load, it’s how you carry it”     ~ John Maxwell

2011 marks the beginning of new adventures in our house.   This year will hold quite a few life changing events.   Tony’s high school graduation is one of them.  I can’t help but think about this late at night… are we READY for the next step?  What IS the next step? 

My business and my blog are also in line to take on new heights this year.  It’s a very exciting time!  My blog received the WOW FACTOR award from wordpress.com, which means that I had a very successful first year.   Thank you for that!  I guess when you write for therapy and release, you end up educating others along the way.  And that was exactly my goal with this blog.  I know a lot of people are curious about autism — especially about teenagers and young adults with autism, as there seems to be very little written about that subject. 

Well, stay tuned because it’s about to get better!  I’m upgrading my blog to another site soon where I’ll be able to post clearer and larger pictures.  I’ll even be able to post educational links and helpful hints for parents, educators, and even spectators. 

I appreciated you all and ask you to keep reading!  My goal is to post more frequently and to really let you into our world.  Sometimes it frightens me because it IS so personal… but I realize that the only way to raise awareness is to honestly open our hearts and let others know exactly what life with autism is like. 

So, yes, heavy is the load… but mighty are the supporters.   God bless you all!

Becki

Tony’s Christmas List

Not your typical Christmas wish list for your average 17-year-old.   But then again…  we aren’t looking for typical.  Just thrilled that he sat down on his own and made his ‘wish list’.   These are just things that will make him happy – things he can memorize, study, dissect, and explore. 

Just some simple DVD’s and books to add to his collection.  Then all will be good in his world.

   

 

Translation: 

DVD’s:  Beauty and the Beast, Toy Story 3, How to Train a Dragon, Shrek Forever After, Despicable Me, Planet 57, Batman Trilogy

Books:  Rock Stars Encyclopedia, The Times of the 20th Century

More DVD’s: Fantasia Double Feature

More Books:  The Second City SNL (Saturday Night Live), Guinness Book of World Records 2011

At least there’s plenty on the list for his birthday too!  🙂

Becki

Tony’s prayer

I found an old bookmark that my oldest son, Michael, made in grade school years ago for Grandparent’s Day.  It’s now next to Tony’s bed and he reads it nightly:

“There’s a Special Place In Heaven for Grandparents

Few can bring the warmth we can find in their embrace, And little more is needed to bring love then the smile on their face.

They’ve a supply of precious stories, yet they’ve time to wipe a tear, or give us reasons to make us laugh, they grow more precious through the years.

I believe that God sent us Grandparents as our legacy from above, to share the moments of our life, as extra measures of love.”

~author unknown

I can see that Tony is still processing his grandpa’s death.  It warms my heart to know that he is learning these coping skills and that he is thinking about his Grandpa Gene… 

You see, prayer is not tangible, you can not “see” it,  you have to “think” it.   And children with autism have a very hard time processing things that are not tangible.  This is a huge step!  Another life skill to add to the list… one that most of us simply take for granted. 

Becki