StimTalk

“A” Day Anniversary January 27, 2009

Five years ago today, Fabio was diagnosed with autism.

Can’t really say “Happy” before this anniversary, now can we?

I can’t believe it was five years ago that time stood still, that my ears actually stopped hearing momentarily, and that my whole world fell apart. And… whether right or wrong… my dreams died.

When I replay that home visit from the county’s experts in my mind, I am pretty unforgiving towards the naive mother that I was back then. I totally missed the knowing exchange of glances between the experts after they ran their tests. I felt confused by the slow delivery of the news from faces that looked like they were imposing a death sentence.

I don’t know if it was better or worse that they first called it PDD. What the hell was Pervasive Developmental Disorder? I’d never heard of it. But by the time they’d left the driveway, the internet had taken my breath away. How thankful I am now for those few extra moments of ignorance.  If they’d said “Autism” from the outset, my visions of Rainman would have induced an immediate breakdown. That came 4 months later with the MD diagnosis.

I was one of those moms who spotted something wrong relatively early. He was diagnosed at 22 months (and in therapy even before the second opinion arrived).  I acted on my suspicions quickly. But I was still not prepared for anything other than someone saying Fabio had a speech delay. And I was burying my beloved sister-in-law the next day. Surely, this was the lowest moment of a life filled with many awful, low moments.

I am amazed at how this epidemic has raged and that now….only five years later…everyone not only knows what autism is, but they probably know someone who has it.

He didn’t look when you called his name. He didn’t point. He didn’t even flinch when a loud bell was rung behind him. The handful of words he’d previously spoken disappeared in the night. After his MMR.

And so we began the longest journey ever undertaken. The one where there is no rest for any of us at any time. The days are full of therapy sessions and opportunities to teach which must not be squandered. The nights are merely a series of snippets of sleep, interrupted by our children’s night terrors or our own nightmares.

There is a sense of urgency everywhere…the idea that the window of opportunity for recovery or mainstreaming is closing with every chime of the clock.

There is the never-ending frustration of watching the passing of deadlines we never should have set for Fabio’s recovery. I remember thinking when he was still three and in intense therapy, that we had 2 more years…2 whole years…before kindergarten. Surely this whole “autism thing” will be behind us by then. But had we not set those deadlines, we would surely have gone insane. Our minds were just trying to protect us.  We were not ready to consider back then that this wasn’t going to go away. And we still aren’t.

Fabio has made the most incredible progress and I am so proud of how hard he has worked every moment of every day of the last five years. I am thankful for all the therapists and teachers and doctors who brought him back to us. And he is back. There is no sound sweeter than the little voice you’ve waited so long to hear and the infectious belly laugh of a happy boy.

When you look at it that way, maybe it is a happy anniversary after all.

Who is Your “Sue”? January 24, 2009

Today is the 5th anniversary of the untimely death of my beloved sister-in-law, Sue. On the one hand, I can’t believe it’s been 5 years already. On the other, it feels like 20.

Autism would not be that hard to handle if Sue was here. Maybe there’s a friend or family member in your life that is your “Sue”?

She was the glue that held my husband’s family together. She was married to the oldest of 3 brothers (I’m married to the baby). With nine years between Mike and my hubby, and Mike and Sue being high school sweethearts, my hubby can’t remember a time when Sue wasn’t around.

She was one of those fun-loving people, who simply loved children. Not just her own two, but anybody’s children. She had a magical way with kids. I’ve never met anyone like her. And she was like a big sister to me, which was especially important when I (an only child) lost my mom, then dad, before I had my children. Sadly, the middle sister-in-law has never been interested in or close to our side of the family.

When my daughter finally arrived, no one was more excited than Sue. No one did more for me than Sue. I had to pry my baby away from her half the time! I was so easy for me to eventually go back to work a few days/week, knowing my daughter was in the best hands.

Sue battled cancer for 4 years. She died on January 24, 2004…just missing both of her children’s weddings that March. Her first grandchild was born that June. Fabio was diagnosed with Autism the day before we buried her. She was only 49.

I am thankful that she lived long enough to know and love both of my children, though only my daughter will have memories of her. I cherish the memories I have of her holding Fabio when she was strong enough to do so. Actually, I cherish every single memory of Sue.

Our family is not the same without her. If she was alive, she would be here for my family and autism would not be so difficult. So I miss Sue every day…especially today.

If you have someone like Sue in your life…someone who you’d be absolutely lost without…I hope you’ll call them today and tell them how important they are to you and your child. And tell us your story so we can feel good about them.

People like Sue…the unsung heroes…are a priceless gift. Be sure to thank them.