Monday, June 6, 2011

Three Years After Diagnosis: Does It Get Any Easier?

(I started to write this before we left on vacation, I just never got around to finish it.  So here it is - better late than never.)

May is a strange month for me.  The unofficial start of the summer season, sweet and bitter.

2006: Sweet: I found out I was pregnant with The Boy on Memorial Day.

2008: Bitter:  The Boy was diagnosed with Autism.

2010: Sweet: Last Memorial Day I was pregnant for the second time.
2010: Bitter:  By August, I wasn't.

2011: Sweet: Earlier this month The Boy was accepted into a new kindergarten program called ASD Horizon.  And if you're reading this on May 31st - we're on are way to Disney World, Florida.  Our first family vacation where we're taking a plane.  We are pulling The Boy out of school for week. We deserve this.    

I remember when The Boy was first diagnosed and services began.  Early Intervention is supposed to be a 24/7 - there are no holidays.  And even though the therapists urged us to go on vacation.  We didn't.  We were prisoners in our home - afraid to miss a single session.  And on the weekends, there was laundry and errands and sometimes more therapy.  And we were afraid to take The Boy to new places, never knowing how he would react.  And there was no way we could even think of taking a plane.

I think about that summer of 2008, when The Boy was first diagnosed.  The summer full of questions and fear.  And loss.  And disappointment.  And blame.  Blaming myself for all the things I did not see. For allowing myself to wait until The Boy turned two before I started the evaluation process.

But by September of 2008, The Boy started at the Harry H. Gordon school.   By September, The Boy had words and could sign "give me" and "more."    

We've lived with autism for the last three years.  And now he talks so much.  Yes, much of it is still scripted and rote, as therapists call it.  But he can get his needs met.  Sometimes he even answers our questions.  The Boy has come a long way. And the feelings of loss and disappointment and blame have subsided. 

The fear still lingers - but it's a different kind of fear.  I fear budget cuts and lack of appropriate services. But I no longer fear for The Boy.  I don't fear for his future.  Especially not now, after our trip to Florida.  He truly surprised me.  And I can't help but feel ashamed for underestimating him.  (But that's for another blog - later this week.)               

I think about how much I've learned in these last three years.  How much The Boy has taught me.  I know that he has a bright future.  There is a light in his eyes.  And he is happy.  He loves us.  And I know that we will not fail him.  

But...have our lives gotten any easier?  Has living with autism gotten any easier?  That's what every parent really wants to know.  That was what I wanted to know three years ago. 

The answer is - NO.  We struggle every day.  But for every struggle and challenge - there is  success.  Every. Single. Day.  And I savor the sweetness of our every day success - no matter how big or small.  They make the bitter easier to swallow. 
While our lives haven't gotten any easier, I will say that it has and will continue to get better.  That is the difference. We've gotten better at living with autism.  We've gotten better at meeting The Boy's needs.  And that's the sweetest and truest measure of success.   


  1. He's coming a long way and will continue to make progress enjoy your vacation in Florida it's a great place to visit.


AutismWonderland - written by Lisa Quinones-Fontanez - is a personal blog chronicling a NYC family's journey with autism, while also sharing local resources for children/families with special needs.