Clouds, May 2010

Clouds, May 2010

Wednesday, December 21, 2016

Information for Parents of Students with ADHD or Similar Behaviors

Just sharing information about an agenda item from the BOE meeting, under the Child Study Team Report...

This section was not read aloud & I also believe most parents probably overlooked it not understanding the context of some of the bullet points.

One in particular I want to help other parents understand, as it may apply to their child one day: 

"A new procedure was put in place regarding doctor assessment forms such as the Vanderbilt, and the Connor's Rating Scales. Parents are no longer to receive these forms regarding the students. These forms will be sent directly to the doctor and a copy will be placed in their file. This is to prevent any backlash from parents towards teachers. This also will increase the accuracy of the data shared with the doctors. Since the purpose of this documentation is to help the doctor with diagnoses, etc, and not to update parents regarding progress, it is felt that this is best practice."

So... forms such as the Vanderbilt Assessment Scale & the Conners Comprehensive Behavior Rating Scale are both well known, & frequently used to provide an overview of very common challenges in children. They can be downloaded off the web & they are intended to be submitted to doctors.

The Vanderbilt is used to help healthcare professionals diagnose ADHD in children. Post-diagnosis, they are used to track (for example) treatment plan progress. There is a Teacher-Informant version & a Parent-Informant version. 

The Conners is designed to provide a complete overview of various child & adolescent concerns & disorders. Psychologists can use the Conners to assess a wide spectrum of behaviors, emotions, academic & social problems in children. 

Approximately a month or so ago this new change in process, of not allowing the parents a copy, was put in place & communicated via a memo from the administration to the faculty. BOE review & approval of this procedure allows this process, described as best practice, to become official policy. 

Parents may feel unsettled that there could ever be an assessment about their kid that they would not be allowed to see. One issue is that technically such a policy could not prevent a parent from displaying backlash towards teachers, anyway. Parents could do this in response to report cards, grades, or anything whatsoever. I don't recommend behaving that way, but a policy against a parental right to see an assessment is not going to stop backlash from happening. This was something I already communicated my opinion about in a letter to the Board. 

Furthermore, it is inaccurate to say that skipping over the parent would increase the accuracy of the data on the assessment... for a couple of reasons. First, the parent is going to ultimately see the assessment anyway because they will get a copy of it from their child's doctor. And furthermore, to that point, this policy can cause delay in the parent's access to this information (which is, in part, a violation of the law which I'll get to later). Second, if a parent is getting a copy of the assessment from the school there is no opportunity to manipulate the data, because the school would be forwarding the original copy of assessment to the healthcare provider. 

My suggestion, which I also shared in the letter to the BOE, would be to change the parental consent form... because parents have to give the school permission for them to even be able to give this information to their child's doctor. So in my opinion the consent should have some sort of legal verbiage added on there stating (for example) that the school is not held responsible for the integrity of any data that the parent provides to the healthcare provider. Or however an attorney may see fit... but there must be a way to protect the information (& the reputation of the source, so-to-speak) without violating the rights of the parents. 

About the law, specifically... under the NJ State Education Code parents are permitted to inspect & review the contents of the student's records, maintained by the district, without any unnecessary delay.

Furthermore, per the official Parental Rights in the Special Education Code, the public school maintaining the child's educational records must assume the parents have the authority (again) to inspect & review their child's records, unless the school has been legally notified in writing that a parent's rights have been terminated under state law. Rights include: seeing a list of all records, where they're kept, the right to explanation of the records, ability to obtain copies, notification before any information is destroyed, as well as parental consent (or refusal) to share their child's records (without educational or legal purpose in seeing them). Also noteworthy, according to the Code, the school must keep a record of persons obtaining access to the records. And the parents have a right to this information including name, date, & how the record was used.

All of the above information can be found online. But long story short, these are voluntary assessments that a parent may ask the school teacher(s) to provide, & as written the new policy subsequently prevents parents from being able to see these assessments.

And last but certainly not least... this policy is a violation of The Family Educational Rights & Privacy Act, more commonly known as FERPA law. 

Although I spoke very briefly to this agenda item, the fact is going into this BOE meeting the majority of my efforts were focused elsewhere. My goal in sharing this is to keep others informed & encourage anyone in disagreement with the new policy to appropriately voice their concern at any time. 


Wednesday, November 23, 2016


This month marks a milestone that I knew nothing about for the first seventeen months of parenthood. Ten years ago in November of 2006, our expectations would be changed forever & a diagnosis meant our lives would never be the same. 

I do (but don't) wish I had a picture of the script that the pediatric neurologist wrote, which was filled from edge-to-edge with the names & codes for the number of different tests that the lab would need to run with my child's blood samples. We all knew Hayden had global developmental delays but none of us knew why. 

Everything from that year ended up in a binder-- assessments, evaluations, appointment notes, & so forth. Out of curiosity I recently flipped through it to count how many different clinic, hospital, or other logos I could find on the various letterhead. Post-diagnosis, there were more than twenty in the first year alone. 

I am not thankful for the fragile x gene itself, & what that means for us on a day-to-day (or sometimes hour-to-hour) basis. I am not thankful for what this gene means for my son & his quality of life which unbeknownst to us was compromised before he even opened his eyes for the very first time. And for those who have walked in similar shoes you will understand when I say I didn't want to be welcomed to Holland in any sort of figurative sense & the tulips are not going to make it better. I still go through small phases of mourning & I know I always will.

I am not thankful for fragile x syndrome because I know how aware Hayden is of the growing developmental gap between himself & his peers. I hate that this gene mutation forces his toughest moments to be on display for everyone to witness, because the biology of what is going on inside his body is stronger than his ability to fight it. The absolute worst behaviors steal the very best of him & this breaks my heart, because he is actually one of the strongest people I know. His strength is evident in his accomplishments, the genuineness of his smile & the tenacity in his eyes. So no, I am not thankful for fragile x interfering with that.

But I will say something else. After a decade of all this sinking in, & some hefty doses of reality that I am not always thankful for, we have also had some strong doses of gratitude along the way. Ten years, ten examples:

Many who have worked directly with Hayden at some point or another, are truly second to none. In a world where there are way more patients than there are providers, & the number of retiring experts is rarely met by adequate graduates to fill their shoes... somehow we have been paired with a number of people who are worth their weight in gold.

Often these incredible people who have been a part of Hayden's program in the past by assignment, also remain a part of his life moving forward. By choice.

And speaking of moving forward, it feels really good having a truly incredible charity to rally around.

Especially such a foundation that turns opportunity into empowerment by offering mutual support annually. 

Speaking of advocacy & all the other necessary roles which define parenting a child with special needs... it's not the worst thing in the world to discover you're really good at something. Even more so at a time in your life when you certainly did not anticipate such profound learning.

And despite the moments when you want to sit in a corner & sob, deep down you know you kick ass when it counts.

It's not about the lab results, even though a diagnosis is responsible for introducing most of us. It's the unparalleled community dedication that holds everyone together.

The opportunity to build strength out of something that is literally labeled fragile.

We don't overlook anything. Detail oriented? Yes. (You have no idea.) But what I really mean is that we inevitably appreciate successes more than we possibly could have if our child didn't have to work so tirelessly. I know what it's like to damn near burst with pride over each achievement & the feeling is indescribable.
And the very best dose of gratitude... the select ones (outside of the fragile x community) who DO see your kid the way you do. They respect him with all of his differences. They admire him for his determination. And they're grateful Hayden is a part of their life. But most importantly they make sure he is a part of their life

I am not thankful for fragile x but that gene will never have enough power to break my gratitude when & where it counts. 


Saturday, November 12, 2016

accounting for awareness

I saw The Accountant Movie which I heard fragile x was mentioned in. Now that I've seen it out of curiosity I also wanted to look up more information. Came across a few interviews which are quite interesting, especially Ben Affleck's research to play a character who is on the autism spectrum-- albeit very high functioning*. Since autism is a spectrum disorder there are many people who are much more cognitively impacted than others. Another side note, in the movie (& elsewhere) *this form of autism is referred to as Asperger's. Currently the medical community is continuing to shy away from that label, & instead using a level 1 diagnosis on the autism spectrum. 

The mention of fragile x in the film is during a phone conversation which I would guesstimate is at least half way through the movie. No major spoiler alerts here at all, so don't worry...
But there is a woman in the story who works for the government in a technical capacity as an analyst, & one of her superiors ultimately coerces her to investigate this accountant. Among the evidence is an audio file which is dissected & examined for clues, & she ultimately uncovers a barely detectable fraction of a segment when you can hear a man verbally stimming. Although her character does not realize what it is, this does stand out so she pursues learning more.

Just to offer a bit of information, though-- speech stimming is different than perseveration because the latter is more accurately defined as continuing to utter something, even after the stimuli which prompted it is no longer there. Whereas stimming is the self-regulating repetition. When the woman in the movie is on the phone & asks about that particular sound clip, the person she is speaking to explains that it is stimming. He says this type of stimming is speech repetition with maintained intonation, & is most common in people with conditions such as fragile x syndrome or autism. She then says something to the effect of... how can you tell... & the man on the phone says that with fragile x there is often an elongated face, enlarged ears... whereas autism can be nearly undetectable. (Not that exact wording but that's essentially what they were saying.)

One thing I would like to clarify is that although there are many people with fragile x syndrome who do have some distinguishing physical characteristics, there are also many who do not. These are among the reasons why fragile x syndrome & autism are often referred to as hidden disabilities. As far as individuals with fragile x who do have some of these traits, there are many who have these attributes from birth & then some who develop them much later during puberty. But again, not everyone will have an obvious outward appearance.

A more accurate discrepancy in the specific context of this movie would have been the intellectual component. So in the movie as fragile x & autism came up when she was investigating the accountant, you would not default to autism because of the lack of physical characteristics. But rather the level of such high functioning that the accountant has could definitely be consistent with someone who is also on the autism spectrum.

I don't know that people would walk away from the movie even remembering that fragile x syndrome was the name of the other condition the man on the phone mentions. And if by chance they did, it is highly unlikely that more than a few might take it a step further to research. But since the awareness is out there I would still consider that a good thing.

There are a number of very difficult scenes in the movie but one seemingly less significant moment that got to me the most, was during one of the many flashbacks to the childhood of Ben Affleck's character. I can't specify the context of the scene because that would be a spoiler alert. But what's going on is that due to the environmental circumstances making the child feel unable to cope, he is spiraling out of control. The father stands behind his son & puts his arms around him-- with much difficulty as the child is thrashing & resisting-- but you literally witness how he also begins to return to a centered state of mind. The input that the father is giving his son is called proprioceptive (pro-pree-o-sep-tiv). One of the easier definitions of this is relating to stimuli connected with the position & movement of the body. Proprioception refers to overall body awareness, so the proprioceptive input is effectively helping the brain regain control of the body.

This was heartbreaking for me to watch because I understand too well how easy it is for the child's reaction to be completely misinterpreted  by the outside world-- & not at all understood as the involuntary neurological response that it is. And furthermore how difficult it can be for the father to be able to give him this input, let alone without anyone getting injured. For at least a couple of years now Hayden has been getting too tall & too strong for me to safely assist him in that way. But watching that unfold on an enormous screen for everyone to see... it's exactly what Dan has had to do countless times, & I felt completely empathetic to what was happening.

This is not an educational movie by any stretch of the imagination, but there are a number of scenes which prove someone did their homework (& other scenes that were quite worrisome). But since it is so uncommon for fragile x to have the spotlight, it was positive to see those couple minutes of awareness on the big screen.

While the advocate in me wants to stand at the exit after every showing with brochures, more realistically I just hope people check it out!

For more information about fragile x syndrome as well as fragile x- associated disorders, &/or the connection between fx & autism, please visit The National Fragile X Foundation via any of those links.  


Wednesday, November 9, 2016

please rise

When Hayden said good morning to me I said it back with a smile.
I am not a morning person (at all) & I also voted for Hillary Clinton. But the only thing that Hayden knows is that it's Wednesday morning & he was happy to get ready for school. 

But while I was cooking his breakfast my mind was still absorbing the shock of this new reality. I know the country & the world is somewhat dumbfounded but I started to smirk. Because in the wee hours of the morning (last night) the first bad joke that came to mind-- after I realized that Donald Trump was likely to win the majority electoral votes-- was I don't think Michelle Obama's remark was meant to be a prediction when she said, 'When they go low, we go high'... yet here we are & they've gone about as low as they can go, & after the end of this election, many more Americans can get high.

Then I thought to myself what is the best case scenario here? That something happens to him before or shortly after he is sworn into office? Not really because logistically that would make things worse. But I thought of the wall he used to talk about. And next thing I know I have this image of him sitting on top of it & in my mind I am reciting, "Trumpty Dumpty sat on a wall..." 
You know what comes next. 

Listen. There is no shame in feeling overwhelmed with grief, crying it out, dusting yourself off, & standing back up again. That is a healthy response to mourning. Personally, I am choosing not to be upset because I am proud that the most qualified candidate in history ultimately won the popular vote. I am proud I did not vote based on bogus sites pretending to publish factual news. I maintained maturity & I was not influenced by internet memes. But most importantly, I am proud I did not succumb to fear rhetoric. 

If our next President struggles to succeed, I will not point my finger at Trump supporters the way they have tried to demean my beliefs. If our next President succeeds in making appropriate decisions for the United States of America, I will enjoy a tremendous sense of relief. (Especially because this is someone who has managed to divide his own political party in a way this country has never seen.)

Either way I vow to accept this outcome with dignity & pride & perhaps, dare I say, in a manner that the opposition may have never mirrored. No one can change the fact that history was still made-- it has not been put on hold & Hillary Clinton has impacted that glass ceiling so it is far more frail than ever before. 

But I personally did not vote based on gender. I voted for the candidate who wants to continue to expand opportunities for Americans with disabilities. The candidate who also wants to support the millions of Americans living with autism. I voted for the candidate who wants to put an end to Alzheimer's within the next ten years. I voted for the candidate who believes that the wealthiest ought to pay their fair share in taxes. I voted for the candidate who believes that all Americans deserve to live their lives free from discrimination. The candidate who believes that we need to build an economy that works for everyone. I voted for the candidate who does believe as a nation we must fully commit to supporting our veterans. The candidate who said it is not enough to contain ISIS-- we must defeat terrorism altogether. 

America's overall decision was a noteworthy narrow margin which can not be argued or ignored. We must keep looking up & be in control of the fact that this is not defeat. This is motivation.

Let us consider the top major cities people think of in the United States: 
New York... Los Angeles... Washington... Miami... Philadelphia.
Clinton won them all. Including the entire NY/NJ/CT tri-state area on the east coast, & the whopping 55 electoral votes on the opposite coast in California. Different coasts with majority support for the same person. That's a bridge approximately 2500 miles long & that is a vision of success. 

I believe we will make it through the next four years & America will see very clearly in 2020. We will be the re-United States that I remain proud to call my home. 


Saturday, October 8, 2016

Red, Blue, & You

[Note: this post has been updated to remain current.]

My political opinion is that we should all have one. Americans who are eligible to vote need to exercise their right to do so. Even in our current, unconventional (to say the least) political climate, I still find it inexcusable that we live in a country where a percentage of the citizens actually need to be encouraged to vote.

On that note I envy anyone wholly supports the candidate of their choice. At this point most Americans seem to be standing beside the person who they despise the least. So you are lucky-- in all seriousness-- if you truly admire either presidential candidate with pure, all-around respect. Many people feel they are compromising some of their own personal beliefs & principals, in one way or another, by casting their vote for the lesser of two evils. (Although, at least they're voting.) I am writing this as if there is only a choice of one or the other, because that is most realistic at this time.

We will have differing views & this is to be expected. In fact on some level it is a relief... otherwise we would most definitely be missing a perspective of crucial importance. And as a parent of a child with special needs I of course have my own perspective.

In my opinion Trump is successful in identifying issues which he believes are most prevalent. He is also quite clear communicating his positions. At the same time I am listening to him but I am not fully understanding, logistically, how he plans to achieve most of these goals. As a voter I do not want to hear what is going to be great, I want to hear how.

My perception of Trump is someone who appears completely annoyed by the entire political process. Not only is there footage of him over the course of many decades admitting that while he feels this country needs better, he wouldn't want to be that person... he actually commented near the beginning of the last debate to the same point. In reference to his own involvement in politics over the last year & a half or so-- he said he can't believe it. Not in the context of having a sense of pride... but rather a tone of disbelief. It was a quick, off-the-cuff comment but he said so. Mr. Trump has been labeled honest & someone who never pretends to be someone he's not (this is actual verbiage borrowed from his latest defense related to the recently surfaced lewd talk, which he said was nothing more than harmless "locker room banter")*. I do not disagree that he tells it like it is. I am only further convinced that Trump is a man who does not even want to be in politics. (*P.S. Mr. Trump was working when he said that. He was on an NBC lot for a guest appearance on Days of our Lives.)

And the only thing I will say with regard to those viral posts about the hypocrisy of people who enjoyed 50 Shades while finding Trump's leaked comment appalling, is this: 50 Shades is a fictional series for entertainment purposes about two consenting adults. End of story. Walking up to someone & groping them in the crotch is the opposite of consent. Are these women letting you do whatever you want, Mr. Trump? Or they didn't have a second to stop you because you just moved right in? Furthermore it is simply inaccurate to compare Trump's consistent behavior with people who like hip hop music. What are some of the nastiest songs you can think of? LL Cool J's Doin' It? Does this woman look or sound like she is not consenting? What about rock music? Ever listen to Nickelback? Some of his songs are nothing short of racy, indecent, or shock-worthy. Yet they are not about forcing sexual contact on a woman. (If your next thought is Bill Clinton, don't worry-- I get to that point, too, about ten paragraphs ahead.)

I am reading the posts of Trump supporters, their articles, their comments & even their jokes. I can't stop anyone from theorizing that Hillary Clinton's public persona is different from her private persona. But what I do see is that many of these people are primarily angered by their perception of the media unfairly bashing Trump, & therefore they are on the defensive. Perhaps they feel like they're being noble by upholding their team loyalty, so-to-speak & that is okay. Even though this is a presidency we're talking about & not a sports team, still, on some level I can respect that.

However, I do not believe Trump even wants to be President except to say he made it happen. I understand voting based on the belief that Trump is a smart businessman and he would surround himself with the right team. I do not agree with it, but I understand that perspective (except for the voters who seem to be choosing based on their hate for Obama, but again, they are planning to vote so that is a start).

I am primarily hearing that Hillary Clinton is weak and/or unfair on issues regarding gun control, immigration, & support for our veterans. Her position on gun control is that you can legally own firearms. The exceptions are people who have been found guilty of domestic abuse, or found guilty of intentionally buying a gun for someone prohibited from owning one. She also supports strengthening the background checks on gun sales. For example, prohibiting purchases by any person on the TSA No-Fly List. So let's get to the topic of immigration next. Hillary will focus resources on detaining & deporting individuals who pose a violent threat to public safety. To that point her position on national security also includes preventing Iran from acquiring a nuclear weapon, utilizing her experience with Russia, China, & many leaders around the world to stand our ground, & implementing a real & comprehensive plan to dismantle global terror networks & defeat ISIS. And finally, she does believe the United States veterans deserve a fundamentally reformed plan to access quality care for their health. She also wants to empower them to apply their unique skills towards jobs, while backing military spouses & their children. I am just offering a single paragraph summary here, but you can visit her site yourself to be further educated.

I will never vote one way or another because a whole bunch of celebrities said so. And just because I am a registered Democrat I will not be stopped from voting Republican. I'm prepared to vote in any election based on the person not the party. While the overwhelming comparisons of Trump to Hitler frighten me-- & if they don't frighten you then I'm even more worried-- I do have more than one focus of importance.

First, I refuse to support someone who "honestly" does not even want the job. And do not misunderstand-- because he does want the title of President. However, he genuinely has ZERO interest with the distinguished task of actually following through with the role of Commander in Chief. The only thing he wants out of this nation is popularity. For Trump this is the ultimate challenge. If you are listening to what he is saying in any one of his speeches, he is not even trying to hide it because his talking points always come back to "stamina" & "winning". This is also the one trait, which we learned at the end of the last debate, he actually respects Hillary Clinton for... because she does not give up. But the primary difference being she is in her element so much so, that she has been labeled the most qualified presidential candidate in history.

Second, I have spent time browsing & reading the sites for each candidate. In this era this is supposed to be our go-to on the issues. Trump, as you know, has two sites-- you can visit & go to his "Positions" tab to read about his views. Or you can visit & you will see information on his country clubs, hotels, & wineries. I am confused & unsettled how he would be able to maintain his dedication to both. But again, this man could be our next President. So I have been digging to find something to make me feel more comfortable with this idea.

Which brings me to the third & final detail driving my personal decision. My own son is the child of an interfaith home with parents who (generally) have opposing political views. But the detail of utmost importance is the fact that our son was born with fragile x syndrome (fxs). Although Hayden's condition is genetic, at any given time everyone in the world could be one moment away from having a disability due to accident, illness, violence, or any number of circumstances. Fxs affects Hayden's neurological & muscular development. He just started middle school & he has already been a target of ill-natured "banter" as a result of having fxs.

So again, I have been reading & watching & absorbing more information than in any other election I have ever voted in. I have friends, family, & loved ones who are 100% Trump supporters-- not many, but a small handful of people who I would consider close. I am trying to understand their perspectives as much as I am trying to understand Trump's. As a caregiver of a child with special needs I was unable to find what I wanted on his site for candidacy, so I simply looked up "Trump policies on Americans with disabilities". As of the first week in October, the top results are articles that do not paint a very reassuring picture of him. The search also yielded a few results related to Social Security Disability Insurance.
But within the top five, there was also this:

I then called the phone number on Trump's site for candidacy & they said they're pretty much just a donation line & they could not answer questions. I said it's very simple-- under the "Positions" section of his site, I could not find any information related to people with special needs. The person I spoke with said I should email info@donaldjtrump... so I did. My message contained one, short simple question with a precise subject header. I have yet to receive a reply but if I do I will update this. (And speaking of emails...)

Last year when I first thought about the possible reality of Mr. Trump having the privilege of calling the White House his home I felt surprisingly unsettled to say the least. And I know those who oppose Hillary are already thinking about former President Clinton's past but this does not convince me that she is wrong for the presidency. Nor does the fact that her husband paid a settlement to resolve a lawsuit, under which he was never found guilty. If I were the accuser I can not imagine I would ever let him get away with that.  Anti-Hillary voters are also forced to use words like "alleged" & "suspicious" because otherwise their statements about the Clinton family would not be accurate. Those words mean "without proof" & "questionable". We do not have to question who & what Trump stands for, because his behavior shows us proof all of the time. 

In their own words, here is part of the mission of The Federal Bureau of Investigation of the United States of America:

"Our priority is to help protect you, your children, your communities, and your businesses from the most dangerous threats facing our nation—from international and domestic terrorists to spies on U.S. soil, from cyber villains to corrupt government officials, from mobsters to violent street gangs, from child predators to serial killers. Along the way, we help defend and uphold our nation’s economy, physical and electronic infrastructure, and democracy."

The same FBI found that Hillary Clinton was careless but not criminal. There are people who disagree & some of them express their opinions through absurd memes. But at the end of the day I will respect the candidate who has the ability to apologize without struggling through those words, & without consistently attempting to bring someone else down or redirect attention. I will also respect the person who can ultimately focus on the issues instead of the insults, & who will listen before they speak.  And last but not least, I respect any human being who understands the importance of women being trusted to make their own decisions about their own bodies, & having access to SAFE healthcare.

The tone at Trump's rallies... it's terrifying.... he brings out the worst in people. Again and again. I never heard Trump make a statement about encouraging his followers to support him in a more productive way. Not even close. As a matter of fact, he has spoken about how protesters ought to be carried out on a stretcher "like the old days", when you could punch them. And his behavior is not much better whether he's at a rally or a debate. Speaking of the most recent debate, I do not know how to respect a person who forms the letter "L" with their pointer finger & thumb, to communicate "loser", while their opponent is speaking. Of course some people say he was just trying to signal "one minute", but unfortunately there were plenty of moments when his communication was perfectly clear. Such as publicly threatening a fellow presidential candidate, & worse, on the stage of an official debate. (I am calling it a threat but that's being light, because it was more of a promise.) Trump supporters say he is just being Honest Trump & he is not HiLIARy... Hellary... whatever.  If you want to vote based on creative name-calling then keep watching Faux News. Debates are a platform to help Americans make informed decisions. It is beyond shameful to treat this venue as a soap opera. If Hillary Clinton organized a panel before the debate with four men who have allegations against Melania, & then invited these guys to sit up front during the debate, the person I would be most humiliated for is Hillary. I'm almost surprised that Trump didn't ask those four women to show up in blue dresses-- I mean it's not as if anything is out of bounds for him.

I also do not understand that 2008 clip of Michelle Obama supposedly attacking Hillary, specifically, when she said something to the effect of... if you can't run your own house you have no business running The White House. Let's just for a moment put aside the fact that she currently endorses Hillary 100%. If you look at the much broader scheme of things, damn straight Hillary is the one wearing the pants in her house.

One thing we can all agree on: for each eyebrow-raising action of one candidate, we could probably dig up something about the other.  But let us be serious: Trump supporters are furious that Clinton supporters are supposedly more concerned over some nasty language, than they are about national security. Putting aside this shallow observation-- & I mean that literally, as in lacking depth-- it is important to realize what comes next if Trump were elected. With everything else in the universe that we all have to worry about, do we want to add to the top of that list a person who speaks defensively, with little filter, & even less self-restraint? I hope everyone takes a moment to think about that because this man, with his overly reactive voice, will be representing all of us. We will run the risk of our beloved country being turned into a land mocked by the rest of the world. He is a reality TV star that has gone too far. So I ask you how can that reality make anyone in our nation feel more safe & secure?

While it is obvious I do not respect the way that Donald Trump has carried himself throughout this election, & even though substantial evidence of his words & actions do reinforce rape culture, (I can't believe I am saying this but) the fact is if I truly believed he is the best option for our country right now then I would simply vote for him. But these stories that are coming out about him-- you know stories, plural-- are not isolated incidents.

What I do believe is that everyone must stop & take a moment & think about our nation's capitol. The history of the White House building. Think far beyond all the presidents who have occupied this historic structure... & think beyond the actual construction (& then reconstruction) of its walls & corridors... where countless leaders and dignitaries have stepped foot. The White House is not just the home of the President of the United States... (as stated on this is a museum of American history. One of the single most important buildings on American soil would simply look foolish if it were occupied by a person whose name is synonymous with a gold tower. Or worse. 

If Trump is ever in control of the White House make no mistake this means he will essentially be in control of your home, too. The other fact you must admit to yourself is that this breathtakingly beautiful, iconic building at 1600 Pennsylvania Avenue would absolutely be nothing more than a trophy to a man like Donald Trump. This may be how he views his wife but that's his choice. The vote for presidency, however, is up to all of us.

Remember, no one will be in the booth with you when you're casting your vote. We live in a democracy & it is never okay to jeopardize that.


Thursday, September 22, 2016

kinder side

Dear Fifth Grader,

Or sixth grader... I am not sure, except that you're a young boy who interacted with my son during recess today. I can not say if we ever met because I do not know who you are, but I am Hayden's mom. I was once a fifth grader, too-- that was a long time ago but I still remember it well.

In the school district that I went to as a child, our Middle School had 6th, 7th, & 8th grade. For me, both 5th & 6th grade were hard years because the elementary school I went to actually closed after 4th grade. So we not only had to attend 5th grade at a different school, but we would only be there for one year. Then of course 6th grade came & it was another big change entering the Middle School. 

Fifth grade had its highs & lows. We were the new kids & I remember having a lot of schoolwork-- more than any year before-- but I also remember meeting new people, & doing really well & earning my first writing award. I particularly enjoyed writing, painting & drawing, as well as gymnastics & swimming. I was grateful from a very young age to have these outlets that made me feel good. 

I am not sure what your hobbies may be, but I hope you enjoy them & make time for them. Hayden has wonderful interests! Thanks to youtube I have an even clearer idea of some of the things that really hold his attention-- everything from fixing cars & trucks (or working with tools in general), to doctors helping patients, or even kids singing in a school chorus. He also loves spending time with family & friends, & being outside.

I know that being a kid can be a lot to handle, or very overwhelming. And not just for someone who is in fifth grade-- you could be in any grade, & even adults get overwhelmed sometimes too. As a matter of fact, I felt very overwhelmed this afternoon shortly before Hayden got home from school.

You see, I found out that Hayden's feelings were hurt during recess. I would never want his feelings to get hurt, but I also do not want your feelings to get hurt either-- so I do hope you're okay.

I do not want to quote the words that (I heard) were spoken to him. And I do not need to because either way, you know what you said & how you said it. Just know that Hayden does belong in school as much as you or anyone else & that is where he is going to stay. And right now his life is all about school, & home, & community-- probably much like yours. Furthermore, while there are people who live in Institutions for different reasons, Hayden lives at home with his mom, dad, & our dog Sammie. He is a very happy person & I hope you have the opportunity to get to know him better. You will be pleasantly surprised just how much he understands & how much fun he is to be around.

Lastly, many people speak differently than other people... the way we pronounce our words can be affected by an accent, or by the muscles in our mouth, or by the way our brains work. The words we speak are our verbal language but there is also something called receptive language. Receptive language is understanding what people are saying to you. For the most part, Hayden's receptive language seems to have developed similar to everyone else's. However, his verbal communication-- while it continues to improve nearly every single day-- is still developing differently. This is because he has fragile x syndrome (which I am guessing you already know). Speech delay is not the only way that fragile x affects Hayden, but it is one of the most easily noticed differences.

At the beginning of every school year I speak to the kids in Hayden's class about these & other differences. I always tell the students that it's okay to notice differences, it just means you're paying attention. But it is never okay to make fun of someone. I do not know who you are because the school did not tell me, but the reason you should not make fun of someone or bully them is because (1) you will make the other person feel bad & (2) you will also make yourself look bad. And that would not be fair because the truth is I bet you are a really great kid... just like Hayden.

It takes a lot of work to be in control of how we make others feel, & it takes a lot of practice. Sometimes I am not good at it either, but we are all capable of trying. Hayden has to work on this, too-- because fragile x can make him feel extremely overwhelmed... even without being in a new school. But underneath his challenges Hayden is a truly kindhearted person & one of the very best I know. I am guessing the same of you. 

I told the person I spoke with at school that I think it would be a great idea if you had a chance to help Hayden every once in a while, because I am confident you could both learn from that.

I do hope moving forward you allow Hayden to see your kinder side. I bet you're someone that he could look up to.


Monday, September 12, 2016

candle snuffer

Changes are a big deal in our little fragile x world, especially sudden ones. I’m well aware of the fact that sometimes changes are unavoidable, but there are reasons why I practically advocate until my lips are blue to maintain consistency for Hayden. I think it sucks & I wish I didn’t have to because it’s mentally exhausting sometimes... constantly putting out all of these little fires. But Hayden has more than his fair share of curve balls & I will always help build successful environments for him.

Today is his 5th day of 5th grade & already there are countless adjustments for him across the board. And today started out with even more unexpected changes. (Don’t worry, I always calmly communicate to the appropriate people & I do not need anyone to do that for me.) 

But it sure would be helpful if there was a more universal understanding of the real impact that changes can have on our kids, not just mine… & how inconsistencies & transitions can heighten any child’s anxiety to the point that they do. I have to believe in my heart that maybe things would be different but until I have better evidence of such understanding, for me, this is why I do what I do.

There will always be concerned parents, impossible budgets, & specific laws that need to be adhered to— & sometimes when you mix all three together, it’s a recipe for complete frustration. But 
for lack of a better way of putting this… I also hope people in the community who are willing to speak up remember to leave their pitchforks at home. Just because many of us have overlapping concerns does not guarantee we’ll see results faster. I do not envy the often difficult position that the school administrators are in & my goal remains to help, not challenge. Hayden's needs should only be an opportunity for others to step up. 

That being said I pray that positive, helpful decisions are on the horizon. Middle school is a very difficult adjustment for us & sometimes Hayden just needs a little bit of help letting the world see what a bright candle he really is.


Thursday, September 8, 2016

the X and the whY

From the literature to the lollipops... here is what we've been up to as Hayden officially became a middle school student.

Although these efforts closely mirror the new-school-year routine that we've already been adhering to since First Grade, this year is very different. The 2016-2017 school year marks the first time that Hayden's learning environment has changed, since 2008.
He was three & now he's eleven. 
First Day of School Pictures, Pre-K & Grade 5

We begin with the annually updated Positive Student Profile. I wouldn't mind taking credit for this idea but I can't-- it's one of the many incredible ideas that I learned from other parents within the fragile x community. This particular version was created (& then customized) off of an existing Word template.

Here is the front of Hayden's current Student Profile:

And here is the back:

I would also like to acknowledge & thank a few other moms because if it wasn't for their input I doubt if I would have (a) thought of doing this & (b) known how to, or what to focus on.
First, Paula Fasciano... because the Student Profile she created for her younger son, Benjamin, is still a very helpful resource. And a lot of the verbiage she used was exactly what I was thinking but wasn't quite sure how to say.
Next, Melissa Welin... because she too shared the Student Profile she created for her older son Caleb. It included information that happened to be very applicable to our guy, & was quite a useful reminder of some points for me to outline on Hayden's.

Also this year when I presented Hayden's Positive Student Profile to the faculty at the middle school-- (yes, I really do this during a teacher in-service day--) I held up a book written by a well-known household name in the fragile x community, & someone who I am grateful to call my friend: Cindi Rogers

Becoming Mrs. Rogers is a detailed account of her & her husband's journey raising two sons with fragile x syndrome. But in addition to their personal experiences, the lessons learned & various techniques they've applied in their daily lives are truly invaluable for countless others. There are large sections of her book which are undoubtedly just as useful for educators & parents of children on any similar path. There is too much information in the book to fit it into my presentation, but I do introduce this so everyone knows it's another valuable resource available to them.  

Anyway, that's Part One of our new school year preparation-- updating & presenting the Positive Student Profile. This year I unfortunately (to say the least) ended up having to present with a tear-streaked face, following receipt of some unsettling news right before I was scheduled to speak to the faculty. But despite feeling blindsided & upset, I looked at everyone through my watery, red eyes & I somehow got through it. I am sharing this to let other parents know that if you're nervous you can do it & you'll be better than fine, you'll be great. 

Part Two is a different day with a different audience... it's the all-important Fragile X Talk with the students in Hayden's class. For this idea I owe a debt of gratitude to Holly Roos, a mom of two from Illinois. While both her son & her daughter have fragile x syndrome, her son is much more impacted by the condition than his younger sister. Holly has had years worth of successful fragile x talks with her son's classmates. 

So during Hayden's earlier school years, I used to read a book called Special People Special Ways. It's an adorable rhyming story with colorful & whimsical illustrations. The last page sums up its message very well:
Although we seem different,
inside we're the same. 
Our hearts are for caring, 
no matter our name. 
Although the book is not specific to fragile x, it is a great approach to acceptance for any young audience & I've recommended it to many others.

However now that the students are older, last year I switched to Fragile X Fred. The author is Jayne Dixon Weber, a mom of two, & her son has fragile x syndrome. 
So it's no coincidence that this wonderfully approachable story about two siblings is told from the perspective of a young girl, as she explains about her brother having fragile x.

When I speak with the students I also pull discussion points from one of the many valuable NFXF brochures:

Just to give a rough outline of what I said to the students when I presented this year, I actually opened with a little throwback...
I explained my fragile x talk from First Grade. At that time because the kids were so young I included a toy prop-- another idea from Holly-- which was a battery operated firetruck. I recalled how much the kids loved it with all the lights & sounds & so forth. And then I explained that I took the batteries out & asked who would still want to play with it... & how everyone in that First Grade classroom raised their hand. And I said I agree because you can still move the truck back & forth, you can still swivel the ladder or put it up & down, & the toy is still going to do a lot of stuff.

And I asked the fifth graders if they wanted to guess why I did that. Only two or three hands went up, but the first student to answer my question was a young girl who made a great point. She essentially said that I wanted to show them the truck wouldn't be boring. I like the way she put that because I think kids can easily relate to that perspective.

I nodded & added just because you might look at the truck & have certain expectations, & then realize it doesn't work the way you thought-- it's actually still a lot of fun. It works differently than you expected but it's still a firetruck.

This is an easy segue into Fragile X Fred, to further explain similarities & differences. So the next thing I did was read the book & since no one had any questions, I said, "Here's what I hope you remember: (1) Fragile X is just something Hayden was born with & you can't catch it... like hair color, eye color, & so forth. (2) You might hear speech or see behaviors that are different. This is especially true if a person with fragile x is overwhelmed, & you might act differently too if you're overwhelmed. But Hayden has to work MUCH harder than most people to get through that feeling. It is not bad manners & Hayden is never trying to be mean. It's just his reaction to feeling too many things at the same time." And then I told them I would get to the third point in a minute.

We paused for an activity which many of us in the fragile x community have come to know & love, thanks to Tracy Murnan Stackhouse, MA, OTR, and Sarah Scharfenaker, MA, CCC-SLP... the Founders of Developmental FX in Colorado.
Regardless how many fragile x conferences a person has been to, they will learn something new every time that "Mouse & Tracy" deliver a presentation.

Their approach to help others understand this "overwhelment" I'm referring to, more commonly known as hyperarousal, is unparalleled. So I asked for three volunteers & ended up with six, because these kids are awesome & enthusiastic & eager to help. I modified it a little bit from the original, but here's what we did.

I had two groups of three stand in front of the classroom & Person 1 is told to do nothing more than stand there. Person 2 is the authority & they are going to try to get information from Person 1, but they're rushing them & they're asking a lot of questions. Person 2 is instructed to ignore Person 3.
Person 3 is the environment. They need to distract Person 1 with sort of getting in their face... standing too close for comfort & annoying them with light touch & so forth. I let the activity go on for
 just a minute or two & then I asked Person 1 how they felt. The boy to my left shrugged his shoulders but he had this look of "what the heck was that" on his face. The girl to my right was smiling, and she said with very big eyes, "Stressed!" 

I explained to the class that this is how Hayden feels most of the time. So I said, "Now I want to tell you what the last point is that I want to make." And I handed everyone a little white card & a crayon. I told them to write down two things-
- a favorite food & an activity they enjoy, either at home or at school. For example, "sandwich" & "walking the dog".

I collected the cards & out of 19 students I showed them that Hayden had at least one-- but in many case two things in common with 16 of the responses.

So (1) Fragile x is just something he was born with & they can not catch it. (2) They may hear speech or see behaviors that are different. (3) Hayden likes a lot of the same things that they do. I reiterated that although Hayden might understand less than some people, he also understands so much more than most people realize. 
I closed the discussion by handing out goodies to thank them for their participation...
 & for attending so well in a classroom that was quite sweltering on that exceptionally humid day! 

emoji stickers & NFXF pencils 
a peanut-free & gluten-free sweet treat

I also 
printed letters to send home, so their parent or guardian would know that I visited the class & to share some information about Fragile X Fred. Including, "The students learned that there are many genes in our DNA-- & even in animals, too!" After I showed the parent letter to the students, one young lady raised her hand & asked if animals can have fragile x as well! Although I can not honestly say for sure whether or not any animals are naturally born with similar gene mutations, I simply said it just means that they have their own genes determining their fur color, or personality, & so forth. (That was one of my favorite questions!) Anyway, the letter is something I've been including every year since First Grade & I do believe it helps. 

Hayden is not in the room when I do either presentation-- to the faculty or the students-- but each situation is different & each child is unique. And some people believe this is not a great idea because it's singling a child out. I disagree.

I am not discussing anything with the students that they don't already notice. I am just opening up a conversation so they know why & that it is okay. 

The peer participation goes over very well! In Sixth Grade I am thinking about having one of the students read the book to the class. Either way, I hope to keep this up for years to come. 

To any parent who is on the fence about leading similar discussions, I hope you follow through with it because you will be amazed.

Awareness is knowledge. Knowledge leads to understanding. Understanding leads to acceptance. 


Saturday, September 3, 2016


Typically it's flattering when people re-share something you have shared. Wouldn't you agree? Especially when you put something out in the land of social media & you say, "Please feel free to pass it on!" Strength in numbers, right? The virtual web via which all of us are connected can be powerful.

Of course sometimes this is positive & other times it is not so positive.

One day last week, approximately a minute after I shared something on social media, my words were captured & then shared again. They were pulled from their original source, taken out of context, & assumptions were made about the root of the circumstance.

I realize I am putting this out there in the middle of a holiday weekend which will significantly reduce my audience, but now is when I feel like speaking up. I am grateful for the person who I was able to confide in regarding the details of this situation, & for their honesty in explaining the most likely source.

I am very open about our journey raising a child with fragile x. I believe SO strongly in awareness... I wear it on my wrist, I display it on my vehicle, evidence of our efforts show all around our home, & most importantly I hope I radiate this awareness from my heart.

But this time my vulnerable words were stolen from me & quietly shared in private. I may never understand what the source was trying to accomplish. (If it were something in our favor, I wish they would have come to me first so I could have helped?)

But just in case my words have ever caused any confusion, here is what I am trying to accomplish:

A happy, productive, meaningful, safe, & fulfilling life for my son. I vow to ensure that famous smile of his never fades.  

Sometimes I receive praise for the way I handle myself & I do believe I have earned that. Other times I am emotionally drained & simply fearful about the future. But as I have said before, we are beyond blessed to have the support of people who truly keep us standing. They are as important to us as the air we breath. They are everywhere in our lives-- friends, family, home, school, doctor's offices-- both within & outside of the fragile x community. The metaphorical web via which all of us are connected is certainly powerful, too.

As a fellow parent I feel practically beholden to the ones who help make such a positive impact in my son's life.

I hope this sets the record straight.

Anyone who is confident that I would agree their heart is in the right place, please do feel free to share this. 

Monday, August 1, 2016

one for the books (or blog)

One time a couple of years ago I trimmed Hayden's fingernails by myself following a long, drawn out scenario like you would not believe. It was just one of those days when it was not going to happen, even with both parents assuming our usual approach of what we do to get through this. Finally when we were all emotionally drained, my devastated child with his tear-streaked pink face sat down, put his hand out in front of him, & said to me, "Please do it." He sort of sniffled his way through the whole thing but it was still amazing that it got done, with just my hands & his. When I finished he asked for his iPad & quietly retreated to his room.

Personal grooming & maintaining proper hygiene can be quite a struggle with people who have fragile x syndrome, despite how much they really want to feel good & look good. The difficulty is primarily due to sensory processing disorder & tactile defensiveness when it is time for hair cuts &/or hair styling, shaving, oral care, & nail trimming... to name a few. Dentistry aside, because I don't know anyone who loves that, but imagine trying to explain to someone like my son that most people gladly pay for someone to do their hair & nails... that going to a salon is a treat?!

Back in 2011, one of my blog posts described what it's like to trim Hayden's nails. As an analogy, I tried to illustrate a very complicated scenario of simply trying to cut a piece of paper.

To paraphrase, I said to imagine 
that you're wearing pants that are too tight. And think how your movement would be restricted if you had to sit on the floor, with your legs crossed like a pretzel. This sort of describes the uncomfortable pressure of having to safely get a large, desperately resisting child to sit somewhat still.

To understand how your hands are going to feel, make a fist with your less-dominant one while sitting on that arm.
Do this until your muscles start cramping, and your arm tingles. 

To understand the difficulty in maintaining precision, hold a piece of paper in your partially-numb less-dominant hand & try to cut the paper with a tiny pair of scissors using your other hand (the dominant one). It's going to be difficult but if the cuts are not precise then the paper will "bleed". 

But it is more than imagining trying to awkwardly cut a pretend piece of paper while your muscles are cramping. Imagine that someone is literally kicking you & pushing you while you're trying to do this. And at the same time, they are trying to pull that piece of paper from your tired, cramping, less-dominant hand. And the jerky movements from the person who is desperately trying to push & pull their way out of the situation, is also repeatedly asking you if you're done.
When I wrote that blog post back in 2011 Hayden was verbal & stringing words together, but not yet communicating in full sentences. And his articulation & pronunciation in general were still developing (as they are now as well). So the word done sounded like the word gun. And his voice would grow increasingly loud & desperate with each fingernail. "Gun? Gun? GUN? GUN??!! GUUUN??!!!!"

By now you are sweating, your muscles are throbbing, some of your extremities are numb, & you've barely survived trimming 5 fingernails but there are 5 more to go. And you have to completely flip-flop your position in order to attempt to safely control the other hand. 

In other words, time to start over again from the beginning. You can't back out now if you wanted to, because once the task begins the child will not settle until the follow-through is complete. Giving up would actually be worse than the struggle of finishing. 

Assume you have survived trimming all ten fingernails & you are now pacing to help yourself calm, while shaking your hands vigorously to regain feeling in them. And let's not forget this is a necessary task that must be repeated several times every month.

You wonder if your child will ever be desensitized enough to tolerate basic self care, let alone develop the fine motor skills to do it themselves! They are only going to continue to grow bigger & stronger. For the moment you feel hopeless & upset.

But as usual, your thoughts are interrupted by a much more important one... the one that resurfaces every time your child maintains such effort to resist a situation... because imagining what your child must be going through that they try so very hard to stop you... is not something that you want to imagine.

So like I said, one time a couple of years ago I trimmed Hayden's nails by myself. This afternoon was the second time that ever happened. But it was different & significant because it was actually quite calm.

Following me prompting him to retrieve the nail clippers from his room, he managed to sit beside me & let me trim one fingernail that was bothering him. Those are the ones that are typically the toughest because he has a sort of inner struggle with himself... wanting it to be over but unable to even start... & the anxiety of the follow-through only worsening the situation. It's tough to explain but when there is one nail that needs to be fixed, or one loose tooth, or one hair strand that is too long & needs to be cut... it is a nightmare following through with fixing whatever it is. Regardless how nonchalant we are.

So imagine my complete shock when I trimmed the one nail & then the one next to it. And then the one on the other side. And then I explained since there were only two left on that hand, we might as well finish. And we did! And then he asked for a prize-- which is fine-- & I reiterated how proud I was & said let's do the other hand & we will get a prize. We discussed where he wanted to go... what he wanted to get (a pickup truck)... & everything was going relatively well.

And then I got grossed out because of the amount of dirt under his nails... which surprisingly worked to my advantage because he thought my reaction was hilarious. So then I really played up the nausea & pretended to literally be on the verge of getting sick. 

At this point the only reason he was not keeping still was because he was laughing so hard.  

Of course me being so blind with pride next thing I know a simple trip to a local store for one $5 pickup truck turned into a pizza Play Doh set instead, plus a mini plush dog from that Pets movie, plus Nutter Butter bites, plus pita chips... & a failed attempt at sneaking in a police cruiser when I was up at the register paying.

But you know, maybe I'll allow myself to be hopeful that we can save that prize for another day.

One at a time...


Tuesday, July 26, 2016

Let who know about what?

What is LEK anyway? 

It stands for "Let 'Em Know"! 

Within the National Fragile X Foundation community, & far beyond, LEK is the annual theme of Fragile X Awareness Month! I like to think of it as Let Everyone Know!

Awareness-- & ultimately education-- is a tremendous part of this message. Generating resources is a crucial component, too.

If you know my son then you know that he is not shy about asking for money-- he is likely to target a man vs a woman, but either way this is a rather unique personality trait. He just really loves his bucks & without hesitation he will ask people (he knows well) for cash. But the good news is a dollar or two will suffice for his level of "greed"... which I assure you only comes from an innocent place. And thank goodness this does not carry over to strangers.

I suck at asking people for money. But it is very important to me to support the very Foundation whose efforts are unparalleled in helping a community that is near & dear to me. 

Obviously I have a personal connection to the National Fragile X Foundation. Anyone who has been paying attention regardless when they met us, but especially if you have known us since November of 2006 (our date of diagnosis), or both... also knows that this is not just about Hayden having fragile x syndrome... because fragile x is an inherited genetic condition...

Our journey is also about my late grandfather who was a brilliant man & a retired physician... & who passed away when I was about 5 months pregnant, not knowing that his Parkinson's-like symptoms were actually FXTAS... or fragile x- associated tremor/ ataxia syndrome... common in carriers, especially & more frequently in male carriers of the gene. This is the condition that snuck up on him slowly, later in life, beginning with difficulty holding utensils, & ultimately robbing him of his ability to walk.

This is about relatives who didn't understand why they were experiencing early onset of menopause... or FXPOI, which is fragile x-associated primary ovarian insufficiency... common in female carriers.

This is about the estimated one million Americans who carry the fragile x gene mutation, & who are at risk for developing one of the fragile x conditions-- including approximately one hundred thousand with fragile x syndrome.

This is about the research which will not stop at (only) supporting the community of people affected by fragile x & fragile x-associated disorders.

For example, so far fragile x is the only known single gene cause of autism. Furthermore, people with fragile x syndrome may also have seizure disorder. So without even going into further explanation, please understand these resources can ultimately help people affected by autism, or Parkinson's, or epilepsy... to name just a few.

I hope in the few minutes it has taken you to read this, you're already beginning to have a clearer picture of how broad the impact of this one gene can really be. Yes fragile x is technically considered "rare", but it is important to understand the true prevalence is greatly affected by an unknown number of people who are undiagnosed or misdiagnosed.

So where does the money go?

Well, these resources help support the mission of the NFXF in uniting the community of people affected by fragile x. This is achieved through education, emotional support, public & professional awareness, as well as research advances.

Then there are local families to think about.

Half of all funds raised during the LEK events directly assist families through the Community Support Network. The CSN is the parent volunteer program of the NFXF with Support Groups around the nation. I am Co-Leader for the New Jersey Fragile X Community Support Group. I also helped bridge communication between Atlantic Health & the NFXF, which eventually led AHS in becoming a member of the FXCRC. And ultimately, the establishment of the first fragile x clinic within the state of NJ.

The NFXF is tireless. Whether it be through educational seminars, workshops, social events, awareness opportunities, or outreach... or whether it be through offering scholarships to help families attend the Conference... the NFXF is always looking for ways to offer both immediate support while proactively advocating to help improve the future for all.

So, if you must, pretend I am a cute little charismatic 11 year old who is asking you for bucks... because the 40 year old mother & wife knows that you have way too many charities to choose from throughout the year.

But if you were in my shoes you would do anything in your power to help, too. These kids... these families... 

they're worth the effort. 

Publishing donation amounts is optional & donor names can be anonymous, too.  [<< click any of the highlighted words to support Hayden's 2016 LEK page]


Thursday, July 21, 2016

the best worst thing

"I'm having a hard time understanding how you all can be so happy."

I hear ya.

I am grateful for the person who shared this sentiment in one of the many social media group pages that I belong to. Specifically, a closed "room" related to the fragile x community. 

This was shared to people who have been/ are currently now/ or will be at conference. That's about as specific as I'll get.

Me, personally... I am not happy when I have to travel in general. I am not happy that I happen to be out of work right now. I am not happy that my husband had to take time off of work this week, after having just started a new promotion. I am not happy that I am away from my son for a number of nights in a row. I am not happy that I can't be in two places at once & orchestrate Hayden's daily routine this week. 

And last but certainly not least... following numerous appointments due to a curious welt of sorts which appeared on Hayden's back a number of weeks ago, I am not happy that the day I left for the fragile x conference we received confirmation that he tested positive for one of the strains of lymes disease. Treatable? Yes. Administering three doses of medicine in Hayden every day for ten days? You might as well tell us to convince a random animal
 out in nature to sit still & smile for a portrait.

Putting all of that aside it's important to point out that everything I've shared so far during this conference(& have been tagged in), can either be described as fun or productive or both. Happy, joyful, hopeful... surrounded by people who share the same sentiments. 

How can any of us be so happy? We're here because of an inherited, genetic disability that affects our families. Heck, the first conference I went to I didn't even get through Day One before having a nervous breakdown on the phone to my sister. I remember standing in front of the hotel, curbside. Sobbing. I told her I went to a session about siblings... (a) I assumed Hayden would not be an only child & (b) in the interim maybe my sister-in-law would find some of the information useful for her (then) youngest, my niece, who was diagnosed with Down syndrome after she was born.

But you see during that sibling session there was a video of a young child talking very candidly about their brother with fragile x, & how he loved him but wished he could do more stuff together with him. He was reluctantly sad & I could not even begin to process what our options would be for the future. I remember telling my sister, "What am I supposed to do? Have three kids? How can I have only one more? That wouldn't be fair to them..." And I cried & cried because there was not any answer that seemed to be the correct answer.

How the heck can anyone go from that, to being happy.

The reality of fragile x is an ongoing mourning process & it is not easy. But there are people on the same, or very similar journey.  

As one friend reiterated, last night at the welcome reception we were reminded we all have a choice:
"we can focus on our kids' disabilities and the things they can't or will never do OR we can focus on the amazing things they can do and celebrate all their abilities. It's a choice we all get to make even though living with fragile X isn't a choice we would have made for ourselves. If you choose to live a glass half full life there are joys to be found and this conference, being around the people who walk in your shoes, is one of those joys.

If we look bafflingly happy it's because we are living that "half-full glass" life and enjoying the beautiful moments of feeling completely and fully understood and loved by the people we are sharing this time with.

It takes time to get here, it takes WORK to get here and some days are STILL "glass half-empty" days...heck, I have "the glass is shattered" days despite the time and work...but these are the people who pick me up, dust me off and refill my glass 

So, heck yeah, I'm happy here...I'm enjoying the people, feeling loved and refilling my glass for the times ahead.

I'll drink to that. 


To learn more about fragile x, the conference, & the mission of the NFXF, visit The National Fragile X Foundation
To support the NFXF during Awareness Month, or to simply view or share Hayden's annual LEK page, please click HERE