Tuesday, March 3, 2009

Kay and Flo

I recently saw the Discover Health documentary on Kay and Flo. I know other bloggers have mentioned them on their blogs in the past, but after seeing the documentary for myself I was in tears.

In case you’re not familiar with these unique and incredible women, they are 50 years old identical twin autistic savants who grew up in NJ and have been passed around from family to family after their parents died. Their younger sister took them in and cared for them as if they were her own children, until she tragically died of a sudden heart attack. The women were forced to try and understand the tragedy of death in a world they didn’t completely understand. Their fragile world consisted mainly of their rigid daily schedule—as most autistic people tend to naturally gravitate to or require in order to feel comfortable and secure in an uncertain world. For these women it was the 100,000 Pyramid to feel secure—an obsession with this game show and with Dick Clark, who would later become their hero; their daily ritual; their lifeline and something and someone predictable to hold on to.

The amazing thing about these women was their unique savant ability or savantism, which was their uncanny ability to recall dates and times of events that happened in history, even events that happened before they were born. When asked about a certain moment in history, they could recall (within second) the day, date and time it occurred—like a human calendar. However, when asked about emotions and feelings based on a hypothetical situation, they were not correct in their assumptions.

What also struck me about these women was their innocence about the world around them. They were so dependent on family member for help and daily living assistance that it was sad and sometimes scary to watch. Throughout the hour program, I thought about my daughter and her life—as one might assume—and even though her life and circumstance is and will be different from these women, I learned more about what I don’t know about my daughter. As the world got to know more about these two articulate women, I learned that I don’t fully know my own daughter’s inner-thoughts, interests, feelings and what makes her scared, sad, or depressed. Today, I can only guess what she thinks or feels based on her reactions to things, places, sounds, smells—because she’s non verbal and still has not acquired the skills to write—as a conduit—to share or express her personal thoughts and fears …

As I was sitting there watching and feeling sad for these two vulnerable and unique women, I was feeling even sadder for my own daughter. I cried for her. I cried while watching my daughter’s world of autism through the life of these women, listening to their problems and their joys and trying to understand their thought process …

The program took an interesting turn as the world got to see how they reacted to their hero, Dick Clark, and the news of his stroke, and to the inevitable moment that the 100,000 Pyramid would no longer be broadcast on national television—an unexpected blow. They told the world how depressed and despondent they’d become—as if their world had dropped out from under them. So vulnerable and innocent that it struck me with immense fear—a fear for my daughter in a world that doesn’t understand her. Unlike these two women, she has no true partner in crime, confidant, or a sisterly-bond and a human connection like no other. She has no one person who completely understands her—who can relate and comfort her especially in a world that can be so cold and hostile—and when the definition of hostile seems to be one in which the world stops airing a favorite game show.

But these women have each other to walk through life with--a benevolent shadow in an uncertain darkness—two flowers that sprung from the same seed in its own unique garden. They are one in the same and different from the rest.

So I cried for my daughter who lives in a world all alone. With no one person to truly rely on, to relate to, to converse with and be understood—at least not in a way that speaks to her and that will keep her safe.

When the program ended it appeared that these two women would finally receive the help that they needed and would be welcomed to a group home that would encourage independent living—together, of course—and that they were going to be just fine. But I was far from fine. I wanted nothing more than to hug my daughter real tight and tell her that it was going to be okay and that I would never let her feel alone or insecure or vulnerable, and that I would always be there if and when she needed me—as her benevolent shadow in an uncertain darkness.

But, of course, I couldn’t do that, at least not that day, because she wasn’t there. She was somewhere else--forced to face her own fears, alone, and in the dark.


Mama Mara said...

I can't imagine how hard it must be for you, but I have a feeling it's harder on you than it is on your daughter, who is in a safe, supportive place getting the services she needs.

Thanks for the heads-up about Kay and Flo. This is the first I've heard of them, and I hope I can catch an airing of their documentary soon.

Shea's Mom said...

Oh Holli, I'm sniffling here with you. Never heard of Kay and Flo. Thanks for your sweet, touching depiction.

Hang in there. Try not to beat yourself up. There will be a time when your daughter will really need you. Right now she is learning other things. You will be there for her when she is ready.


Tanya @ Teenautism said...

My heart goes out to you, Holly. I remember Nigel's non-verbal days, and how sad I was. I'm so sorry for the despair you are describing. I wish there was something I could say that would offer some comfort. Take care.

Holly Nappi Collins said...

Thanks you all for your support, really. Just so you know I’m not depressed or in great despair, but there are moments of sadness and fear for Meghan—this program just heightened those thoughts at that moment. But you know, most days I do think that Meghan is so strong and so smart that she will be just fine. You are right, Mara, it’s more me than her.


Hey you great post, how heartbreaking!!! Just again shows me your strength. You are truly amazing, you inspire me.

Anonymous said...

I'm catching up on posts I missed while out of town the past few weeks, and found this one. Wow. I'm blown away and feel your grief and pain all these days and miles later. All I can say is that in many ways, I can relate too.