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