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

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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
 

The Talk

Today on The Talk a fairly new CBS Talk Show, they continue to shine a light on Autism A­wareness Month. On the show they focused on some amazing teens who have autism and are role models in their community.­­

One such teen, Carly Fleischmann, literally took my breath away.  A hurried and very deep sob came from no where when I watched her “talk” via computer program about what life was like as a teenager with autism.  I read another autism blog recently that talked about  parents having PTSD (post traumatic stress disorder) and reliving the reality of this disease day in and day out.  I haven’t been able to get that post out of my mind and have shared it with a few friends.  I do believe that at moments like these, I relive — or recreate — the sadness and trauma that one faces when given a lifelong diagnosis of autism.  And the deep, deep desire to help him reach his potential… whatever that may be.

In her blog Mom-NOS states:

“…The physical reaction to loud noises.  The sleepless nights.  The ceaseless anxiety.  The sensory overload.  The fear.

Not their children:  Them. (the moms)

The diagnosis resonated – not for everyone, but for some.  I watched as faces changed, as moms considered – perhaps for the first time – that their feelings and their troubles were not the cause of some personal inadequacy or weakness or inability to cope, but were instead the reasonable response of a reasonable person who had been living with unreasonable demands without reasonable support for an unreasonable length of time.  I watched as they looked at each other – but YOU – so strong – so together – YOU feel this way, too?

It was a powerful moment.

I walked away thinking that it was a moment that should be shared – that there are probably many parents of autistic children who think that their pain, anxiety, and feelings of hopelessness are theirs alone, and, worse, are an indication that they are just not capable of parenting their children.  So, I went home and started Googling.  I landed on a page from the National Institutes of Health that lists the symptoms of Post-Traumatic Stress Disorder.  The description below belongs to the NIH, but the bolding is mine; it highlights the symptoms that I heard my friends identify in themselves:

Symptoms of PTSD fall into three main categories:

1. Repeated “reliving” of the event, which disturbs day-to-day activity

  • Flashback episodes, where the event seems to be happening again and again
  • Recurrent distressing memories of the event
  • Repeated dreams of the event
  • Physical reactions to situations that remind you of the traumatic event

2. Avoidance

  • Emotional “numbing,” or feeling as though you don’t care about anything
  • Feelings of detachment
  • Inability to remember important aspects of the trauma
  • Lack of interest in normal activities
  • Less expression of moods
  • Staying away from places, people, or objects that remind you of the event
  • Sense of having no future

3. Arousal

  • Difficulty concentrating
  • Exaggerated response to things that startle you
  • Excess awareness (hypervigilance)
  • Irritability or outbursts of anger
  • Sleeping difficulties

You also might feel a sense of guilt about the event (including “survivor guilt”), and the following symptoms, which are typical of anxiety, stress, and tension:

  • Agitation, or excitability
  • Dizziness
  • Fainting
  • Feeling your heart beat in your chest (palpitations)
  • Fever
  • Headache
  • Paleness

It’s important to note that PTSD is characterized by symptoms that persist for more than a month – and that the items I’ve highlighted here are those that have been persistent and unmitigated for my friends.  Symptoms resolved within a month – those I haven’t addressed here – are considered manifestations of Acute Stress Disorder (and, no, the irony that it shares its acronym with Autism Spectrum Disorder is not lost on me).”

———————————–

For you other autism moms reading this blog, I sometimes feel this way too.  I do. 

What brought me to such deep tears so quickly was the fact that Carly talked so eloquently through a computer.  Her thoughts and her comments were so ‘normal’.  And that was her point!  She said that because she may not look normal on the outside, people are quick to judge that she’s not smart.  And because she can’t articulate her thoughts through the spoken language, she is often misjudged.  

She is an amazing gal and I’m so intrigued with her story because she CAN communicate and tell the world just what it’s like to be in a body/mind with autism. 

What would my Tony be like if he could really communicate?  What would he say?  What would he tell me?  I would walk a thousand miles to be able to just have a conversation with him about what he’s feeling and why he gets so frustrated at times. 

Maybe he could answer the one question that’s been burning on my mind since his diagnosis 16 1/2 years ago…   why did this happen?  

Tony 19 mos

 

 

 

 

 

 

 

or maybe he’d tell me that the ‘why’  just doesn’t matter…

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

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

 

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

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