Clouds, May 2010

Clouds, May 2010

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


Wednesday, July 6, 2016

Cloak of Ignorance

Aaah... summer is here... the season of relaxation...

For most.

It is possible that sometimes (maybe) I might have a difficult time differentiating between "normal anxiety" (whatever that means) & "Cara anxiety".

This week has been one of those times but in this instance-- which I'll explain-- ultimately I decided to trust my anxiety. And more importantly, address it. (Just a side note, actual names have been changed in this post.)

Typical of Hayden he has been repeatedly asking me about summer program-- teacher, aide, van, van driver, transportation aide & so forth. I have of course consistently reassured him everyone's name, & shared any other information I have.
I am never in a hurry to disrupt Hayden's routine or confuse him in any way-- even temporarily. But the current transportation assignment for ESY (Extended School Year) left me quite unsettled.

Yesterday was the first day & when Hayden was picked up he confidently approached the van (the appropriate make & model I said it would be), & politely greeted the driver & transportation aide with, "Hi, I'm Hayden-" 

Quite oddly, his greeting was ignored. 

So I looked at the aide & said, "You're Gregory, correct?" And he said yes & I said, "Hi, this is Hayden." The aide sort of smiled at Hayden but didn't say anything. Then I looked at the driver & said, "You're Patrick, correct?" He said yes & I said, "Hi, this is Hayden." He didn't really respond & I didn't want Hayden to feel weird so I quickly introduced myself. Then I handed "Patrick" a piece of paper with our contact information & my cell phone number. I asked him about the route (if there were more stops on the way to school & if so, how many), & then I asked about what time Hayden would be home. The driver seemed ever-so-slightly annoyed & said that he didn't know because he only timed the route getting there but not the return. Again just wanting to ensure Hayden was not uncomfortable I looked at him, said to have a good day, & that I would be home for him. The vehicle was marked with the name of the transportation company & as they pulled away I took note of the license plate number (the latter of which might possibly be an example of Cara-anxiety). 

I knew he made it to school safely because the nurse happened to call about twenty minutes later to ask me about something. Anyway, fast-forwarding to yesterday afternoon when Hayden came home, I was surprised to see that the driver was on the phone. I do think he just got on the call as he pulled in our driveway, because it sounded like the conversation had only just begun. However, he was not speaking through a hands-free device. Worse, he didn't even turn to look at me or wave. The aide got out of the van, opened the door for Hayden, sort of helped him out of the vehicle, but didn't say anything either. No "goodbye" or "see you tomorrow". When we got in the house Hayden asked me if he was going on the van again in the morning. I reluctantly told him yes. 

This morning our routine was pretty regular. When Hayden was picked up I believe the aide may have even said hello to him-- but I am not sure. Hayden was sort of talking nervously as soon as "Gregory" got out of the passenger seat to open the door for him. I looked up & said hello. He didn't say anything back & then I looked at the driver & said, "Hi Patrick, Good Morning." He did not even acknowledge me. He had a binder in his lap which he didn't even look up from! It was open, sort of leaning against the steering wheel, & he was writing something... or marking something... 
I walked back into my house & within a half hour I called the school. I communicated to the appropriate person(s) that we simply had some concerns, so I was going to drive Hayden. I was told the transportation company would be contacted, & I followed up with a more specific email as well.(Phone calls are fine sometimes, but usually I don't want to risk someone having a selective memory when it comes to what I am communicating & how I am communicating.) 

Aside from the fact that the driver was punctual, & the vehicle seemed fine, I did not want my child spending another minute of his life in the care of those two. They might be very smart, fun, nice, tall, bearded men who just happen to be sloppily dressed-- but I wouldn't know. Because they treated me & my son like we were practically invisible.

I don't care a whole lot what a person looks like-- or if they're only a few years younger than my dad & they choose to celebrate their birthday at a restaurant seemingly named for owls & known for hiring women with large breasts. Which I may or may not have learned by possibly looking up information on social media. Because truthfully putting all that aside, I never want my son with people who do not pay attention to him. I doubt it's a simple coincidence that you can spell ignore within ignorance. 

This is not public transportation & he is just a child. Even if he didn't have special needs, & even if he was older, he is still a student. I know the transportation is outlined in his IEP & I do not make a habit of asking for services we are not going to utilize. Nor am I quick to complain (frankly I am a firm believer in catching more bees with honey). But these gentlemen left me feeling quite unsettled, & the unfortunate truth is that I am currently out of work so I am available to drive my own kid. 

Ultimately I just hope that my concern will be taken seriously & perhaps considered when contracting transportation for September. The quick reply from the district was little more than a polite acknowledgement thanking me for sharing the information, with an apology that Hayden's interaction with the transportation staff was not a more "cordial experience". And agreeing that they're glad I am available to "assist with the situation at this time".

Well, here's hoping in the fall I can return to my preferred season of relaxation.

In the meantime if you understand the importance of reciprocal friendliness, have the urge to spread awareness, & agree this is mutually beneficial for EVERYONE-- feel free to share! After all it is Fragile X Awareness Month!

Any excuse to raise awareness is a good one.