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

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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

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

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