Clouds, May 2010

Clouds, May 2010

Tuesday, January 26, 2016

good manners

I am a daughter, a sister, an aunt, a wife, & most importantly a mom.

I had a very eye-opening experience the other day & although it was one of the more difficult situations I have ever been in, I suppose I am trying to be grateful that I have an opportunity to turn this into something educational.  

For the most part my kid is a typical 10 1/2 year old boy. Upon meeting him initially, one would not notice any distinguishing physical characteristics that would hint to what does make him unique. But as everyone knows he was born with a genetic disorder called fragile x syndrome. FXS is the most common inherited form of intellectual impairment, & the number one known single gene cause of autism. Not everyone with FXS has a dual diagnosis of autism, but about a third of the people do. Another major connection between fragile x & autism is that they are both hidden disabilities.

This is one of the millions of reasons that I put forth so much of my effort, into awareness. For starters I speak with the faculty at my son's school every year. I focus on those who will be working directly with him, but it's always open to anyone who wants to join. In addition, since first grade I have been visiting my son's class once a year at the beginning of each school year, to speak with the students about fragile x.

We try to focus on three common key points:
1. Fragile X is something he was born with, the same way everyone is born with certain hair color & eye color. You can't catch it.
2. You may see behaviors or hear speech that is different-- especially if a person with FXS is overwhelmed.

3. For the most part, my son enjoys the same things as everyone else. 

Near the end of the school year I also supply flyers about National Fragile X Awareness Day, to remind everyone to wear green on July 22nd. The school even changes their sign out front to help spread the message of support. And as a matter of fact, July 22nd is now an officially recognized day within our own township as well.

But as I was saying, we had a very eye-opening experience the other day.
The incident over the weekend involved a neighbor but our son was nearby during the altercation. It didn't start out as an altercation, but after an unsuccessful attempt to resolve calmly, law enforcement was contacted.

Although my son understands much more than most people realize, he still understands less than most. And in a situation such as the one from the other day, unfortunately the tension & tone increased his anxiety & confusion. In addition he has sensory processing disorder, so his ability to make sense of everything around him & appropriately tolerate it is often compromised.

So while the officer was speaking to the neighbors, & we could not hear everything they were saying, Hayden's emotional discomfort continued to increase. He ended up yelling out to the neighbors, "I hate you."

With that, the neighbor turned to the police officer & said, "See what I mean? If that kid curses at me one more time I'm calling DYFS on them."

I have been a parent, advocate, caregiver, guardian, educator & every role in between for more than a decade. I have never heard anything even close to that comment directed at me.

Before the officer left, I asked him if he could please come over for a moment. I can't give all the details of our exchange but he did say that the neighbor's words were a comment not a threat. And I said something to the effect of... "Well, I have never heard anything like that before & I don't know what parent wouldn't be upset by that." At that point my husband started to explain-- or rather reiterate-- that our son has special needs. And the officer said something along the lines of, "I understand but at some point you also have to teach him manners..."

Whatever came out of his mouth after that went in one ear & out the other. I don't "blame" him though, & I want to be clear about that. But in the immediate moment all I could think was that he does not know who he is talking to. In the aftermath, I realized I need to do something more.

Well going back to the live scene, despite the fact that I was now starting to get visibly upset, 
I proceeded to explain to the officer that the school is like our second family. Having been raised the daughter of a special educator I understood from the get-go just how critically important the home-school relationship is. I pointed to the neighbors & said I know they have lived here 10, perhaps 15 years longer than us... but we have been here for 11 years ourselves. I elaborated from there & said (not necessarily in this order) I am an active volunteer with various groups within our local school district... I am also a national volunteer with the (National) Fragile X Foundation... (I went on about some other information that I don't need to add here)... & then continued further just so there was no misunderstanding, & shared that our son has been to clinics from New York to California. Not only for evaluation but as a study participant (when our clinic visits can be reciprocally productive-- even better). And I also added-- which I did not have to-- that we happen to work with a team of specialists at Atlantic Health who collaborate with our son's team at school as well. 

And a few times in between those points I simply reiterated we are not those people. He started to say "I know", "I understand..." but I tried to politely interject that he might not know, because this is out of context.

He respectfully nodded & said if it happens again to give them a call.

ALL of this being said, society needs to understand that Hayden's response is not bad manners. Nor is it a result of bad parenting. It's a neurological event in response to being overwhelmed. It is not a choice. And even though he knows it's happening, he does not like it. I can guarantee he actually hates when he feels that way. He is intuitive enough to sense that he can't control it, & at the same time he doesn't want to feel out of control.  

There is a critical need for law enforcement agencies, first responders, & other community helpers to be able to objectively respond to situations. There are many people like my son who live with hidden disabilities. And just like any person with (more obvious) special needs, they deserve to be safely assisted.

For example, how would anyone outside of the fragile x community even know that pushing or hitting can actually be a need for sensory input. People with fragile x are never trying to be mean. They are just trying to protect themselves because they can not handle what is going on.

The other fact that is equally heart breaking, is that my son does realize the importance of respecting adults. If nothing else, because he knows they represent safety, stability, & understanding. I noticed over the years that the kids at school he seems to be most drawn to, kind of fit into those categories as well. They're the ones who just "get" him & won't judge him. He perceives them as safe.

So for ANYONE who reads this, please consider this a standing offer... I am more than happy to supply information, speak individually, or to a group.

It is the people who do not have hidden disabilities, who are the ones that need to maintain good manners.



  1. Thanks for writing this Cara! I completely concur!! My son can't contain himself when he is overwhelmed and it is not a lack of manners but rather a lack of control over his impulse due to neurological disconnect! <3

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