the opposite of worse

Facebook is where I learned that two of yesterday's victims had fragile x syndrome. Any article you read describes the two brothers in their 50's as having contagious laughter and gentle spirits. One article in particular, published by USA Today mentions fragile x specifically.

Yesterday was the day when a gunman not much older than myself burst into a synagogue and opened fire, while yelling his intentions to kill Jews.

I visited the website for the Tree of Life Congregation in Pittsburgh. Their home page, unchanged I might add-- as it was before the murders-- says in part:

"We offer a warm and welcoming environment where even the oldest Jewish traditions become relevant to the way our members live today. From engaging services, social events, family-friendly activities and learning opportunities to support in times of illness or sorrow, we match the old with the new to deliver conservative Jewish tradition that’s accessible, warm and progressive."

In times of sorrow jumped out at me. I scroll down on the page and I see a post from a Rabbi Myers that was just published in July. He begins, "Current news recycles at a dizzying pace...". A couple sentences later I see "Parkland students"... with a lump in my throat and my eyes beginning to well up, I only scan the page because in the moment I can not stomach reading too carefully. And then a few paragraphs down... this:
"Despite continuous calls for sensible gun control and mental health care, our elected leaders in Washington knew that it would fade away in time.  Unless there is a dramatic turnaround in the mid-term elections, I fear that that the status quo will remain unchanged, and school shootings will resume.  I shouldn’t have to include in my daily morning prayers that God should watch over my wife and daughter, both teachers, and keep them safe.  Where are our leaders?"

Fast forward three months to the horror that occurred in that very synagogue. Within hours of Saturday's event, when reporters asked Donald Trump (in so many words) if it might be time to revisit gun laws Mr. Trump said, "Well again, this has little to do with it if you take a look. If they had protection inside the results would have been far better."

What a stark contrast to the Rabbi's words, also in the same July 2018 post:
"Our school students deserve better. Immigrant families deserve better. We deserve better."

I haven't exactly taken a survey of who goes to a church or synagogue where there are armed guards posted. Whether during a specific event such as (in this case) a baby naming, or just on a regular basis to protect worshipers during daily service... to my knowledge an armed guard is not the norm. I don't care if Trump was only trying to suggest that it should be the norm, because instead I am trying to put myself in the shoes of the families of the victims. Which I never can. However, I hope they can hear my prayers... and the prayers of any clear minded person in the universe... that your congregation should not under any circumstance take any responsibility for the horror that occurred. Even if the President of the United States himself suggests otherwise.

Where do we as a country draw the line at "if a victim had...[insert any number of ideas]... then the results would have been far better."

I do not know the city of Pittsburgh very well at all. I visited the University when I was going through the college process because I couldn't decide between U Pitt and Ithaca (I'm very aware of the fact that they have next to nothing in common). When I went to visit each of them I liked Pittsburgh but Ithaca was love at first sight. So I don't have any ties to the city of Pittsburgh but I don't believe anyone needs a personal connection other than being human, and recognizing this horror for what it is.

But as a parent of a young man with fragile x syndrome... and as a parent of a young man with fragile x syndrome who just became a Bar Mitzvah less than three months ago, this feels like it hits very close to home.

They were all taken before their time and therefore each of them was too young to go. None of whom could have or should have done any one thing any differently.

To loosely quote part of the Mourner's Kaddish, I wish you all abundant peace in heaven. May G-d shelter each of you with the cover of His wings forever.

In alphabetical order:
Joyce Fienberg, 75 years young
Richard Gottfried, 65 years young 
Rose Mallinger, 97 years young 
Jerry Rabinowitz, 66 years young 
Cecil Rosenthal, 59 years young
David Rosenthal, 54 years young
Bernice Simon, 84 years young
Sylvan Simon, 86 years young 
Daniel Stein, 71 years young 
Melvin Wax, 88 years young
Irving Younger, 69 years young 

Amen.

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less than great

Monday, October 15th the ABC Network show The Good Doctor aired an episode involving a patient with fragile x syndrome. The patient was a teenage boy being raised by a single mom.

Seemingly right from the pages of fragilex.org, the Good Doctor himself accurately paraphrased the condition with four key points: it is a genetic disorder (✔) characterized by intellectual disability (✔), behavioral issues (✔) , and hyperactivity (✔).

The show's portrayal of said behavioral issues could be generally accurate-- depends on the individual. And to that point, it is not so uncommon for caregivers to not be able to provide the most ideal care. This episode did touch on the perspective of someone who is overwhelmed and who is not able to maintain the best, safest environment for herself and her son. It is simply not accurate to say that the parent is giving up. What they're doing is desperately trying to help their loved one to grow up... and to thrive. Having her child placed where he is surrounded by people who can help him is not giving up. It is facing reality. It's heartbreaking but it happens. 

However the few times that this character spoke his quick, clear communication was highly unrealistic. The way he addressed the hospital staff instead of his mom to ask if the surgery was going to hurt, in reality, would be extremely unlikely. Later in the episode, after we learn the mom has hurt her hand (it is implied during a situation with her son), and he is beside her as the doctors determine they need to bring her to the OR this time he (the son) becomes overwhelmed. The doctor tries to help and the young guy with fragile x ends up in a fight-or-flight mode and consequently punches the doctor. A short while later they're sitting at a small patio table together outside-- the fragile x patient and the doctor. He offers the doctor an apology for hurting him-- he says he is sorry. The doctor asks him if he has a coping mechanism when he gets overwhelmed. The boy with fragile x looks at the doctor, makes eye contact, and says, "Do you?"

Once again their exchange (albeit short) was not at all typical for how a person with fxs would communicate. Especially someone in an unfamiliar setting surrounded by unfamiliar people... who had to go to the hospital unexpectedly... just had his own procedure and now suddenly his mom is having one too. The entire context would have greatly affected him. The very last thing he would be doing is asking the doctor such a level-headed mature question. If not for the fact that this teenager was carrying around his favorite plush, you might argue it would hardly be obvious he is cognitively impaired.

And then after a brief denial, the mom begins a conversation with her son. They're not only still in the hospital but basically as far as he's concerned what she is about to say is completely coming out of nowhere. While the viewer can not hear the exchange we know it's about finding a different environment for him. He is intensely upset for a moment, yells at his mom to stop it, but then leans in for a hug. This tough-love moment was again, beyond inaccurate.

But the least accurate detail is what the character playing his mom said back at the beginning of the episode. She tells the doctors that her son was a beautiful baby and that he walked and talked... and then after the age of 2 it was as if he started going backwards. I have yet to hear of a case of fragile x syndrome where an individual was actually developing at a typical progression and then suddenly not.

Fragile x is something that people are born with and the delays and many other characteristics are present at birth. Of course more traits become evident as they develop but they will not begin life meeting all of the typical milestones on time, and then stop.

I suppose all in all any fragile x awareness is better than none... and the doctor's character does define it well... but that's about as good as it got.

For more information please visit The National Fragile X Foundation at fragilex.org 

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