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

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

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

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

 

Love in Action

 

From the Autism Speaks Blog, Posted: 13 Jan 2011 11:20 AM PST

This Family Services blog was written by a woman inspired by her friend, the grandmother of a young boy with autism.

“I sit watching Jeremy always so busy with his repetitive activities while my mind races with thoughts.  Oh God, where is the place for an Autistic child in this world?  I am at the end of my rope, I don’t know what else to do.  I try to be positive and encouraging.   I am always helping and seeking ways to make him better.  I am so anxious I can’t sleep well at night for thinking about all our dreams for him that won’t come true, what he will not be able to do and ways to change these potential outcomes of his life. As I sadly ponder these thoughts, in my heart I hear these words:

The place for Jeremy is in your heart; it’s in mine.  Each of my creations has a unique place in my world, a purpose to be found.  Help him find his!  Trust me, I will guide you.  He was not sent to you to fulfill your worldly dreams.  He has come to be a special part of your life.

He has a sweet spirit that lives inside of him, one that can be overshadowed by fear but nurtured by love.  Learn to recognize it, see it, savor it and watch Jeremy become what I created him to be.  You are loving him the way he was created to be loved, continue.

How can I even use trust and Autism in the same sentence?  How can I acknowledge you, God, in Jeremy’s Autism for when I do I’m angry with you for letting it happen!  What do I need to know? What good can I do here?  If I am loving him they way he was created to be loved, then, Dear God, what can I do differently?

Then I remembered in my thoughts a Bible verse I heard a lot in church as I grew up.  “Love is patient, love is kind…love always hopes, always trusts, always protects and always perseveres.” I hear words again in my heart: 

To care for Jeremy, to make a safe place for him, and to provide what you can is one of the most life-giving, life-receiving things you can do.  For this is love in action.  Now, let my love nourish you as your love nourishes Jeremy.

After I hear these words I remember something else from the Bible…. “Be not anxious for anything but in prayer and thanksgiving make your requests known to God and the peace of God will guard your heart . . .”

While these thoughts are in my mind, I have been watching Jeremy line up his trucks.  As if on cue, he looks up at me and gives me one of those rare, beautiful smiles.  I think from my heart Thank You!”

What a beautiful explanation of thoughts that run through my mind, and thousands of others, as we try to make sense of this ‘world’ our children live in.  I had to share this as I thought it was very comforting.  To all my readers – and especially those raising children with autism — remember this:  the only disability in life is a bad attitude.  Keep the faith! 

Becki