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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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

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

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