The Parking Lot

My famous quote is: I have long maintained that the most important things in a mom's life are learned in the parking lot after a PTO meeting.

It may sound silly, but the reality is that every time my husband needed information and I was able to provide it, he would say, "How did you know that?" The answer always seemed to be, "Well, when I was talking to So-and-So in the parking lot, she told me about ..."

I have learned how to sign up for rec. department programs, where to get science fair project boards on sale, and when to camp out in line to assure that we get recital tickets. I have been privy to admissions of infidelity, disclosures of families who couldn't afford new coats, and knowing who is on Prozac. I found out about math homework websites, recipes for picky eaters, and great ideas for birthday parties.

Agendas in hand, fund-raising packets completed, armies of PTO moms hit the parking lots after meetings each month, thinking that they are going to get into their cars and drive away. In reality, the only time that actually happens is when the meetings run over and threaten to make the moms miss American Idol or Grey's Anatomy. The rest of the time, what actually transpires is that a benign comment is casually thrown from one minivan to the next, something such as "See you at the bake sale," and then before you know it, a conversation is born.

"The bake sale? Oh, I can't make that. Tommy has a game."
"Oh, Billy has a game, too, but I'm going to drop him off, and then run over to the bookstore to look for something before it's time to pick up at the game, and then I’ll go back to the bake sale."
"What are you looking for at the bookstore?"
"A cookbook for gluten-free meals. Harvey just got diagnosed with celiac disease."
"You don't say! Lou’s brother has celiac, too, and we need to really plan when they’re coming over for the holidays.”
“Well, we found gluten-free things at that health food store on the highway, but it’s so expensive, so I thought I’d better learn how to make some things myself.”
“That makes sense, but have you tried the Whole Harvest store in Smithfield? It’s not expensive.”
“The one in the plaza with the granite place?”
“Yes. In fact, we got our granite countertops at that place. They were so nice to us!”
“Well, they should be. The owner’s wife is Mrs. Jones, the fifth grade teacher at the kids’ school. It wouldn’t be good if they ticked off the students’ families, right?”

And on and on it goes. Who knows whom, this one’s related to that one, bargains to be had, socials studies projects, carpools to dancing, sales on helmets, etc. Before there was Google, there was the Parking Lot. And now that Google exists, the Parking Lot is even busier than before – a veritable swap meet of information, all valuable and relevant, and all because of moms.

Fragile X and FXTAS

Our very close friends and former next door neighbors moved to Florida more than 20 years ago, but we are still close. Sophie has two kids, Nina and Matt. Nina is married to Parker and has a son, Josh, now 20. Josh has Fragile X syndrome, a genetic disorder that manifests itself similarly to autism/mental retardation/developmental disorders, etc. Fragile X has only been studied since it was identified about 20+ years ago. Since then, of course, much research has been done about the syndrome and about the kids identified with it. Of course, many adults have it, too, but years ago they only went as far as to identify that these people had special needs, never fishing for a very specific cause. That being said, almost all of the literature out there is about Fragile X kids, not adults.

Our friend Sophie, now in her early 80's, developed some mobility, balance, and dementia-like issues very recently, and after being misdiagnosed with no specific cause first, then Parkinson's second, they finally found out the real culprit. She was tested, and she carries the Fragile X gene, but does not have Fragile X syndrome. Her daughter Nina also carries it, but does not have the syndrome, either. Because Nina's son Josh has Fragile X syndrome, Nina did some networking and found a doctor in California who is doing research on just this topic - the grandparents of Fragile X kids having dementia-like or Alzheimer's-like symptoms later in life, coming on suddenly. It turns out that there is a definite link, and the problem is called FXTAS. It took such a long time to find this information because there is so little info out there about Fragile X kids' parents or grandparents at this point. It was important to identify the exact cause, of course, because it determines the proper treatment.

So why am I telling you about this? Because it seems that there are probably a lot of older adults out there who are affected with symptoms that are automatically attributed to Parkinson's or Alzheimer's when, in fact, they are actually exhibiting symptoms caused by the Fragile X gene. If you know kids with Fragile X syndrome, you might want to let their families know about this information since it can potentially be an issue for the kids' parents or grandparents. A simple DNA test for Fragile X syndrome will tell if a person is a carrier.

The website which explains a lot is http://www.fragilex.org/html/fxtas.htm. There is also a great organization called FRAXA that has been supporting Fragile X research right from the time when this disorder was identified. You can find the site at www.fraxa.org.

As I've said for many years, the best information is always gleaned in the parking lot after a PTO meeting. Moms know this well. It's all about networking, sharing, and connecting, so from my virtual "parking lot," I wish you all the best, and hope that you or someone you know might benefit from this information.