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My blog is moving ~  check out the new site and subscribe to get email updates at www.theothersideofnormal.com

Simply click the link above and re-subscribe at the new site!    If  I don’t hear from you, I’ll be sending you an email to confirm the new subscription.  Watch for it! 

Couldn’t do it without you guys… so come on over and let’s continue the journey.   I have so much to tell you.  🙂

Becki

Happy Mother’s Day

If your child could tell you this, he or she would. 

This is for all  the angels out there struggling every single day ~

Becki

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

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

Check your ego at the door

One of the things most parents raising kids with autism know well is the constant embarrassment or humiliation that goes with the territory. 

The calls from school, the looks, the stares, the general inappropriateness of everything they do.  Especially in public.  Yes we’ve tried teaching them everything you did as they were growing up.  The problem is that, with autism, they lose their skills.  They are socially inept.  And it doesn’t bother them.

But it’s hard for the parent or caregiver to take them public places and deal with the inappropriateness and the social disgrace.  In the beginning, I was devastated.  I’m a very social person – always have been.  I thrive on being the entertainer and being entertained.  I’m what they call a “High I”, for anyone who’s studied personality types.  From the DISC profile, a “High I” is defined as:

Influential(Inducement, Inspiring, Impressive, Interacting, Interesting) Social, persuasive, friendly.Energetic, busy, optimistic, distractible.

Imaginative, focus on the new and future.

Focused on people than tasks.

Tell rather than ask.

Ask ‘Who?’

What does this mean, to “check your ego at the door”?    It means to get out of your own stinkin’ way.  It’s not about you.

My husband and I went to a seminar back in 2003 that taught us both this concept.  The seminar had nothing to do with autism, yet everything to do with how to live through it.  We went to this seminar with friends thinking we were going for our business.  We ended up being there for our survival.  What we learned in that short weekend was nothing short of a miracle.   We  learned that the gifts we were given were for a larger purpose.  Our natural positive attitudes and zest for life were there for a reason — so we could endure when times were so tough that we didn’t want to face another day.  The ‘gift’ I think we have is that we can find humor in every situation, that we are strong in social situations, so therefore, we can overcome the awkwardness and get on to the business of teaching our son the very things he needs to survive in our socially driven world.   

Am I saying that only certain people can survive raising a child with autism?  No.  What I’m just saying is, this is how we ‘ve managed to survive. 

So last week, as I rushed to school to help in a crisis situation with Tony, I literally checked my ego at the door.  I steadied my emotions, thanked the Crisis Team on the way in —  who were also there to help — and proceeded to calm Tony enough so I could take him home.  

It’s so not about me.  Every parent will tell you that.  The difference here is that I’ve had to get over caring about what everyone else thought.  I’ve had to get over the humiliation and the frustration, because this is not the first time it’s happened. 

And it most likely won’t be the last.

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