Monday, April 16, 2012

Step 16: A Different kind of Same...

A "new kind of normal" or "different kind of same" ---  I can't decide on which fits best, so I'll go with both.

When I first started this autism journey when my son was diagnosed at just about two years of age, I came across a quote by Sally Meyer, whose writings I have grown to love.  It was a simple quote that to this day still has a profound effect on me.  "Autism is not the end of the world, it's just the beginning of a new one, open your eyes and see."

At that time my eyes were squeezed as tightly shut as you could get them.  I didn't want autism.  Didn't want a new world.  Didn't want to see what would lie before me.  I didn't want to go to Holland no matter how pretty the blasted tulips there were.  Didn't want to go to Italy, Beiruit, or any other place someone compared "autism" to.  I wanted to simply be back in that dream where both my boys were perfect and my life would be lived happily ever after.  But even as defiant as I am, I eventually forced myself to pry my eyes open to face this new world head on.  I would not allow autism to be the end of that dream.  I would allow myself to forge ahead with a new dream.  I would define for our family, a new "normal".

Our first family vacation attempt with autism helped necessitate that new "normal" for our family.  We learned that as much as we tried to remain the same, some things would have to change.  Perhaps the "autism awareness" lesson in that for us, was that while we should always try to help Brandon fit in our world as best as we can, we must respect the parts of his world that we have no right making him leave, if just for our sake.

But, I’m Italian, and I’m stubborn, not to mention very sentimental.  I grew up on Long Island Sound in New Jersey,  and have many,  many wonderful memories of the beach, “Ole Barney” - the lighthouse, fishing, and being around a bunch of family loudness and laughter that I have so loved.  I wanted to bring Brandon with the hopes that maybe, just maybe, something from my childhood surroundings would touch him in the way that it touched me as a young girl.  Maybe something about the sea breeze would reach him in a way that we couldn’t.  I suppose some part of me was still picturing myself  as a typical mom taking her typical son on a typical family vacation, like other typical families do. But, --  I’m not a typical mom, and I didn’t have a typical son.  And so began our vacation….

We boarded a plane, nonstop to New Jersey.  We were very careful to book the “non-stop” since we knew our son only too well.  We wanted to get from point A to point B as quickly as possible.  We specifically requested the back of the plane –  where the engines are the loudest, in case of “shrieks and shouts and humming” from my son.    The stewardess announced we would be taking off – and my husband and I looked at each other in bewilderment as the plane was half empty.   “Could it be?”  we thought.  We have the whole back half of the plane!   There was no one in front of us for at least five rows.  Brandon was free to wiggle, stand up, move around, and have a grand ole time.  He was happy.   I looked over at my husband and started to relax thinking that this is too good to be true.

Indeed, it was.  The moment we arrived at our destination and walked in the tiny house full of smoke and loud boisterous Italians, Brandon changed.  We changed.  Anxiety and apprehension set in.   Within thirty  minutes, he fell off an unfamiliar porch trying to escape the mayhem, cut  his knee open during the escape, and was smacked in the face with the back of a porch swing;  because the relatives didn’t know, that he didn’t know, to not go behind a swinging porch swing.  Within one hour, it took me holding his top half, and my husband holding his bottom half,  – to calm him down from an over-stimulated sensory meltdown.   Within two hours  - I was begging my husband to send Brandon and me back home.  

I’ll never forget what happened next as long as I live.  It was a defining moment for "Team Guppy" in our journey with autism. After my poor child finally fell asleep from nothing more than sheer exhaustion, and we were both exhausted from the ordeal -  my husband looked at me and said, “We can do this.”   I have never had so much love for him as I did right then at that moment.  There was as much pain and heartache in his eyes, as I felt in my heart.  They say that having a child with a disability either makes or breaks a marriage.  For us, that moment was our test to determine how we would handle things for years to come.   I’ll never forget what my husband said next.   “I may not have been put on this earth to be a great athlete, or a Wall Street wizard, or to be famous, …..  but instead I think God put me on this earth to be a great daddy to Brandon, and a great husband to you….”

My husband's words consoled me and reassured me that no matter what our situation, we are together, and we will be ok.  I guess some part of me was still in denial about my son’s autism.  I really thought it would somehow “mean” something to my son for me to take him to the places where I grew up.  I had it all so perfectly pictured in my mind.  Me doing with my son, all the things my Mother, Grandfather, Uncles did with me.   Watching the “wonder and awe” in his eyes, as they had in mine. 

We took Brandon to the beach.  The sun was too bright for his eyes.  The sand was too squishy for him to tolerate walking on.  He wouldn’t sit still on the blanket, and the water was too cold.  The only “wonder and awe” about the whole thing for Brandon was finding a piece of seaweed to flap in the breeze!    And so the best part of the beach going experience for my son,  was when my husband finally gave up and took him to the car and drove him up and down the island so he could hum to the sound of the engine.

And so it was there that I learned acceptance.  Not defeat – but acceptance.  The acceptance that would allow me to open my eyes wide to see the beauty in accepting that it’s ok if he didn’t enjoy that “stuff.”  The acceptance that I didn’t always have to try so hard to bring him into “my world” – that perhaps “his world” is just as great a place to be, as long as we’re all together. 

I felt the anxiety of wanting to have a “typical” vacation leave….  What a relief!   In it’s place all I wanted what was best for him.  If that meant sitting in the house or driving in the car – then that’s what we did.  And that was ok.   I had to laugh that  we spent all that time and money to fly from Texas to New Jersey just so my son could do what he loved to do right at home!  

Finally, the week was over,  and it was time to get on the airplane to go home.    I must remind you that we planned carefully and paid extra money to book a non-stop flight there and back.   Obviously the uneventful flight there spoiled us because we weren’t prepared for our trip home.  Once again, Murphy’s Law,  – the one that most applies when you least need it to, happened.  What was to follow wouldn’t have been so bad if the week had been peaceful and relaxing.   Our flight home was cram packed, with delay after delay.   What we booked to be a 2.5 hour flight, turned into a 7 hour nightmare.  Needless to say, the flight home and the flight attendant’s remarks to us remains as one of those blurs in your memory bank that you try and blot out. Along with my remarks to her unfortunately….

When we finally arrived home – with no one in the house but us – my husband did a little “Yeah, we’re home” dance and clapped his hands.   Brandon, who had had a miserable week and flight home, looked straight at him, and smiled and laughed for the first time in a week.  He clapped his hands for the first time ever!

That week I learned that with my family, it is indeed,   “All for one, and one for all.” Our anxiety at not having the perfect vacation we planned, was replaced by the joy of just being together with our son.  On his terms, not ours. 

From then to now, there have been so many instances like that, where we've just had to say, "This doesn't work for us."   So very many others can do typical things together with their child, youth, or adult with autism.  We applaud them.  We are happy for them.  But for us, we've had to learn what works for us.  And most importantly, what doesn't.

My typical son Matt got married this past weekend.  After I had posted all the pictures from the wedding online, someone asked about Brandon.  Why there were no pictures of Brandon and his brother, the groom.

Why?  Because Brandon wasn't there.

Make no mistake, even though we have learned acceptance and how to thrive in our "new normal" - it doesn't mean that at times it doesn't cut like a knife.  That it doesn't pierce through our heart like a sword. Do you think the entire time I sat there watching my son say his vows that I didn't notice who was missing?  Do you think that the entire time I saw my son's best man standing beside him, I didn't have to endure the pain that it should have been his brother there beside him?  Brandon is the exact same age as Matt's cousin who was the best man. 

But Brandon doesn't understand about brothers. About weddings. About being a best man.  So instead my very best friend made sure Brandon had the best day of his life at a respite event during the wedding.  Where he could laugh, run, be chased and tickled the whole night.

That's what autism awareness is.  It is joys and it is sorrows and it is everything in between. With that very first vacation to our typical son's wedding, and all that has been in between, we have learned that Autism did not, has not, and will not ever, defeat us. It may redefine "normal" for us in how we live our life.  It gives us the highest highs in finding out what we are truly made of, and it gives us the lowest lows in wedding pictures with someone missing.  Autism at times slows us down, but never stops us.  Autism puts up a good fight against us, but it will never defeat us.  Never.

Autism Awareness for us is simply that we have a child who is a different kind of same as yours.

Autism Awareness for us is simply that it means we live our life a different kind of same as you.

Though in so very many ways that count --- perhaps even better.