Where were you when….?  Pick any significant date in history. Where were you when the home run record was broken, when the Beatles played the Ed Sullivan show, when President Kennedy was shot, when the space shuttle exploded, when Japan was hit with a devastating earthquake, followed immediately by a tsunami?  Where were you when countless other major events rocked our world?

These events affected millions of lives. They stand out as pivotal moments captured in time, touchstones of our culture that our entire country and sometimes the entire world share with one another. Yesterday, America marked the 10th anniversary of 9/11. It was honored in big public ways and in small private moments, and when people gathered, they were asked the question: Where were you on September 11?

Individuals have such moments as well.  Private earthquakes.  Silent tsunamis.  Moments that bring your world to a screeching halt as the rest of the Earth’s population goes on unaffected.  Anniversaries that exist only on YOUR calendar, reminders of your private “Where were you when…” moment.  There are no television specials or monuments to mark these occasions, just a dull ache of the heart once a year, every year.

For me, the biggest, most painful “where were you when…” sentence ends with “…..Jeff was diagnosed with autism.”

The obvious answer is “in the doctor’s office” but the real answer is “the land of the lost” exhausted from searching for answers as my son continued to regress.  In hindsight, the diagnosis was the easy part compared to living with and treating Jeff’s autism.  But HEARING the diagnosis, the dreaded “A” word for the first time, was clearly my silent tsunami. Our family history now has two classifications: Before autism and after autism.

Before autism, I used to be a great aunt.  I made a big deal of every birthday, Halloween and Christmas, spoiling my nieces and nephews with a bounty of gifts and attention.  After autism, store bought greeting cards and Target gift cards became the norm.  I just couldn’t muster the strength to do more.

Before autism, while I can’t profess to have been the perfect wife (looking at that sentence clearly means I wasn’t), I was a pretty good one. I treated our special days in the same manner I had showered gifts on the nieces and nephews.  After autism, there were days I forgot I even had a husband.

One day in particular two years into the autism diagnosis, my husband and I were stumbling in the kitchen, gearing up to get two kids and ourselves ready for the day.  I was laser focused on the coffee machine and mumbling curses while I waited for the nectar I so craved.  I felt my husband’s presence but no words were shared.  He looked at me and said “Well…… (long pause)……Don’t you have anything to say?” I didn’t.  I’m not a morning person and two years of sleepless nights with Jeff had done nothing to improve that.  My husband, seeing clearly by my face I had nothing to offer, says “It’s our anniversary. Happy anniversary.”

Oh.   Ummmmm…….yeah. Sorry dude.

I thrust my hand in the air and said “High five! We made it another year without a major accident or death!” This is now what passed for romance in the Ackerman household.  Before autism, we used to celebrate with romantic dinners and recalled memories of the best day of our lives.  After autism, a high five. Nice job Lisa.

Anniversaries are on my mind because this month marks our 12th autism anniversary. For many years I would cry.  Sometimes I would find a bottle of wine and then cry.  Other times I would call an autism mommy friend and cry.  Late at night on each anniversary, instead of asking the “where were you” question, I would play the “what if” game.  What if Jeff did not severely regress? What if Jeff did not have dozens of medical issues?  What if Jeff did not have six therapists on speed dial?  What if Jeff was just Jeff, and he didn’t have to have a label attached to his school file or his medical records. What if?

I have much to be thankful for because of Jeff’s progress.  He is a miracle with a beautiful smile and a great sense of humor.  He has made up a ton of ground academically and with his health issues.  But even with those milestones and progress to celebrate, there is still that dreaded anniversary looming – the day autism came into our lives and changed our world. After autism, every ounce of my energy has been focused on helping Jeff and every ounce of his energy has been spent trying to learn things other kids simply take for granted.

Anniversaries get you thinking.  This year I am making two promises.  Hold me to them:

1.  I will remember my anniversary with my husband and I will celebrate it with more than a high five. (how about a high ten?)

2.  I will make our autism anniversary different than years prior.  Maybe I will ignore it.  Maybe I will focus on the great kid Jeff is today.  Maybe I will break out another bottle of wine and use it to toast Jeff’s future rather that play the “what if” game.  But no matter what I do to mark the day, I know I will have at least one fleeting moment of “where were you when…”

6 thoughts on “Anniversaries…

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  1. There is so much that our families have in common with each other regarding this time in their life even though each story is so unique. I remember wanting to kill the messenger. Well, maybe not kill but harm or hurt or devastate for at least a moment like I felt she had done to me.

  2. Thank you Lisa for the courage to voice out what many of us parents think. You are the person that inspired me 6yrs ago to believe in our kids. So grateful to have met you. You are my rockstar! May God bless you and yours. Sincerely; Vince Baca

  3. we are only six years into autism. but coming up on our fifth anniversary, which is some time in October, i don’t actually know when. the first year of it with son #1 the doctor forgot to tell us he was thinking PDDNOS. we didn’t know until we read the paper work a few years later. but now, this year, with two out of three with autism, like you i resolve to view anniversaries, and life differently. i resolve to celebrate life because it is instead of grieving because of what isn’t. i love my kids. i like my kids. i enjoy my kids. and my husband and it’s time to get on with LIVING. so living is what we will do. going places (though they will have to be free) doing things (same criteria). pausing in the process to enjoy my family instead of just pushing and running blind sighted toward recovery. it’s time to live again. new anniversary – time to live again. a date i will celebrate with my family for a life time. happy (new) anniversary all.

  4. January 5th 2008 for us. I remember thinking the doctor must’ve thought we were unusual, because the diagnosis was a huge relief to me and my hubby. Dear doctor didn’t know, but he was a 2nd opinion (first dx was mild MR, which wouldn’t have been devastating, but it just didn’t fit our very bright child who just seemed to be disappearing before our eyes). At the time of that dx, it was PDD-NOS; but over the next few months, our son slipped into full-blown, no-doubt-about it autism. I’ve never been so desperate in my life to find answers. After several years of GFCF, ABA, VBA and many other things, I no longer grieve losing the child he was (he definitely REGRESSED – I remember on Thanksgiving 2009 locking myself in a bathroom to sob after my sweet FIL made a comment about how much he missed the child Nico had been); my son works so hard all the time and he is literally the happiest kid I’ve ever seen – I sincerely hope he never loses that quality.

    At least one of you remembered your anniversary – my hubby and I were reminded two years ago by an evening phone call from my parents; we literally LAUGHED OUT LOUD. Priorities are so relative. God bless you Lisa and TACA for all you do!

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