Clouds, May 2010

Clouds, May 2010
Clouds, May 2010: This picture was taken from the car window on Route 80 in NJ. The lines in the sky are obviously from planes, but the fact that they form an "x" caught my attention. And after I snapped the pic, I noticed the cloud to the left as it looks like a boy's face.

Tuesday, July 29, 2014

are you an eXpert?

In recent weeks people within the fragile x community have been hosting, contributing, and/or participating in fundraisers, walks, & other events, to let people know about fragile x during Fragile X Awareness month!

As July is soon to come to a close, I wonder... would YOU be able to answer this question:

What is fragile x?

There is a big difference between being able to answer this, & simply knowing someone who has fragile x.

If you are not confident that you can explain fragile x, & you're willing to admit it :) I hope you agree to quiz yourself.




1.
Fragile x syndrome is:

a.
genetic   b. caused by autism   c. both a & b
 



2.
In total, there are ____ fragile x- associated disorders.

a. One   b. Two   c. Three   d. Four



3. National Fragile X Awareness Day is on:

a.
July 1st   b. July 11th   c. July 12th  d. July 22nd


4. When it comes to fragile x, a person is either a carrier of the gene or they have the mutation. What are the chances of an affected female passing on fragile x to her children?

a.
1 in every 4   b. 50% chance with each pregnancy  
c.
depends on the sex of the child   d. it is randomly passed





5. Fathers who carry the fragile x gene in premutation form will:

a.
only pass it on if the mother is a carrier, too
b.
only pass it on to their son(s) but not their daughter(s)
c.
only pass it on to their daughter(s) but not their son(s)



6.
It is possible for the fragile X premutation to be passed silently within a family, for generations, before a child is born with the syndrome.

a.
This statement is true as-is
b.
True, but only in families of a certain ethnicity
c.
Partially false-- the inheritance can only skip one generation  
d.
This statement is completely false


So, how did you do?



1. The answer is A. Fragile X syndrome is genetic. Fragile X syndrome is not caused by autism. However, fragile x syndrome is the most common known cause of autism.

2. The answer is C. In total, there are 3 fragile x-associated disorders:
(1) FXS- fragile x syndrome
(2) FXTAS- fragile x-associated tremor/ataxia syndrome
(3) FXPOI- fragile x-associated primary ovarian insufficiency

3. The answer is D. National Fragile X Awareness Day is recognized & observed on July 22nd, during Fragile X Awareness Month!

4. The answer is B. A female has a 50/50 chance of passing on fragile x to each of her children.

5. The answer is C. A male carrier can & will pass the fragile x gene to his daughters, & only in a carrier form.

6. The answer is A. Yes, fragile x is often passed silently within a family for generations.


So, if someone should ask, please tell them:


fragile x syndrome is a genetic disorder. It is the most common inherited form of intellectual impairment, & the number one known genetic cause of autism.

Please explore www.fragilex.org to learn more!

--

Monday, July 28, 2014

people first

There is no such thing as a diagnosee. There are however, people with a diagnosis.

Just something to think about the next time you say "Autistics" or "Downs" or "Fx-ers". I do not know what any of those are, but I do know who humans are.

Having a diagnosis is not the same as a race or an ethnicity.

This is not just my thing. I am not making it up.

It's called People First language.

"People First language is used to speak appropriately and respectfully about an individual with a disability. People First language emphasizes the person first, not the disability."

I realize I can not stop all people from speaking this way, all of the time.

I can't even stop some of the people from speaking this way, all of the time.


But if I can change the way that some people speak, at least some of the time... then I will. If you agree, feel free to pass it on.

--

Friday, July 25, 2014

let's meet

I am not very friendly unless I know you (which really works wonders when getting to know someone), I am a homebody who generally dislikes traveling, & I have anxiety about nearly everything Hayden-related.

But take my advice, anyway: if you
have never been to a NFXF Conference before, you should go.

It took me about five years to warm up to these once-strangers that I did not want to have anything in common with. I first heard of fragile x in November of 2006. I first learned of its community some time in early 2007. I attended a Conference of said community in 2008. That trip kicked off a lovely, long process of grieving... & so by the time of the next Conference in 2010 when I was still pretty much stuck in the same place, despite my family's encouragement, I was adamant about not attending.

The next two years I somehow very slowly took a complete 180. Not only did we attend the 2012 Conference, I actually enjoyed it.

Well last week on Tuesday, July 15th I boarded a plane headed for California.
Aside from an insane amount of preparations, a little delay in take-off, & noticeable turbulence over some western mountain region... the flight was luckily otherwise uneventful.

We landed, I collected my luggage which thankfully arrived in baggage claim pretty quickly, & then I headed outside to find a ride to the hotel. I was incredibly relieved to see some familiar faces when I approached the lane of waiting taxis & hotel shuttles. At least I knew I would end up in the right place if I followed them (like I said-- don't travel much)!


I remembered one person from CSN training back in October in St Louis (I'll explain*), & another family I recognized from facebook. I introduced myself to the guy I recognized from St Louis & joined him & another couple in the shuttle. When they told me their names I knew I had heard of them as well.  

We were on our way to meet up with hundreds of others-- all in California for the same reason: The 14th International Fragile X Conference, hosted by The National Fragile X Foundation (NFXF). For me this was International Conference #3, however, it was my first time attending solo... & my first one as a CSN Co-Leader. (Translation: Community Support Network of the NFXF*, which I am a parent volunteer for, as Co-Leader of the New Jersey CSN.)

These Conferences by the way-- which occur once every two years (they used to be once every four)-- cover everything. Whether you're a parent or a physician, a newly diagnosed or long-time member of the community, a person with fragile x, a person without fragile x, or a carrier of fragile x... there is truly something for everyone. From family-friendly conference sessions, to very clinical sessions for professionals, & anything in between-- it's all there under one hotel roof (the location of which changes with every International Conference).
--


Literally upon arrival at the hotel on Tuesday, everything from that point felt like someone was holding down the fast-forward button for the rest of the week-- friends, forums, food, repeat...

I was even lucky enough to squeeze in a visit with family, because I happen to have cousins in Orange County. And I must mention that one of them had me upgraded to first class for the flight home which was a beyond-wonderful experience in itself... & one that I will not soon forget
!

But overall my California trip was jam-packed with way too many highlights to even begin to recap in a single blog post. And as much as I would love to return to this at a later date, & relive every activity of every day, I am simultaneously entirely too tired to log it all (which I so wanted to do while I was there, but the little amount of time I actually spent in the hotel room was to sleep or get dressed).  At the end of each day, I barely sat at the computer long enough to upload the day's pictures.

Each day was more awesome than the one before... to the point that, if there was suddenly a cure for fragile x... I would REALLY miss these conferences!

Don't get me wrong... I certainly hope that me & my child live to see a cure... but as the saying goes (I'm paraphrasing) this is seriously the best damn club that you would never wish to be a part of.


Although I can not promise you first class on your flight home, I can say that thanks to the incredible members of this unique fragile x community-- (as I mentioned in my speech for a dear friend last week--) we have helped one another to see something pretty unbelievable:
What started out as a diagnosis will eventually turn into confidence.


Do you know what the difference is between "conference" & "confidence"?

Two letters.

So to anyone in the fragile x community who is unfamiliar with both of those words-- you have two years to prepare...

See you at the 2016 NFXF conference in San Antonio, Texas...


(pm me if you want to know a great conversational ice breaker about polar bears...
)

--

Tuesday, July 1, 2014

thought you should know

Some time near the age of 5, one day, Hayden was walking around with his "bucks"-- (totally normal, he is always hitting people up for cash--) & at one point he kept saying that he needed two.

I knew he already had $5 in singles, & he sure did not need to run around with $7, so I was not exactly responsive to his request for more.


However, he was certainly persistent & gradually became more determined (to put it kindly)... "need koo!," he kept saying. (The "t" sound came out like a "k" sound.)

Finally I looked at the cash he was holding & sure enough he only had $3... hence the reason why he was looking for "koo" more... which got lost who-knows-where.

But the point is, this is how I learned that he does have the ability to count.

I may have already mentioned that story in a blog post somewhere along the way over the years... but any time I am offering an example of how people with fragile x syndrome (my son included) sort of mask their own knowledge... how they are as much incidental learners as they are incidental "revealers", if you will... the scenario with the $5 is usually my go-to story.

Hayden is also a visual learner & a sight-reader, so he knows what his written name looks like & can identify it. He has a pretty impressive "sight word" vocabulary... but he does not yet read in the traditional sense of sounding a word out.

Although, this has been a strength of his for a long time. Even before Hayden had expressive language, I remember his former teacher telling us that he could pair up a classmate's written name with their corresponding class chore-- both simply spelled-out on labels which went on the class job chart.

That was a pretty huge accomplishment.

The other popular perspective I offer is something that happened when he was also kindergarten-age (that was a truly breakthrough period of time-- with speech, too)...

You see, someone who used to work with Hayden (not for very long) once said, "I don't think he's getting anything out of it"... referring to his learning environment at the time. And this person offered an example of the section they had been doing about the weather... that's how they started each day... talking about the temperature, the sky, etc...

But the "educator" seemed solely focused on Hayden not staying seated... & Hayden having been fidgety... & Hayden doing this... & Hayden doing that... but one thing he would not do, was pay attention. That's what this person told us.

Ultimately, however, their "complaining" only offered me clarity. I suddenly understood why Hayden recently began talking about the weather so much at home-- seemingly out of nowhere. Now I knew the source of his new interest. And I'll never forget when I looked at this person & proudly said, "Oh, that's funny-- that explains why Hayden has been bringing up the weather when he looks out the window in the morning! He never used to do that!"

I didn't get a response. But this is how I learned for sure, that Hayden is truly paying attention even when he does not seem to be. 

 
--


Well tonight I just witnessed my third go-to story, & I think it tops the first two...


Hayden was playing waiter earlier this evening-- a frequent favorite-- & he was pretending to take my order. (I think he just really wanted a doughnut so I'll admit that asking me if I wanted iced coffee was a clever conversation starter.)

He said, "decaf?" And I said, "yes." And then he said, "spenda"? And I said, "yes, Splenda."

He had a little piece of paper & a pen & he was pretending to scribble a list. And then he said, "How you say your name, Mom?"

And I said, "What?" (He meant spell...)

And he said, "C - r - a ..." & then paused as if waiting for me to finish.

I called out to Dan & told him what just happened. With that, one of us looked at Hayden & asked him how to spell my name (I don't remember who), & again Hayden said, "C - r - a"... possibly even twice...

So then Dan said, "How do you spell my name?"

I wondered if Hayden would repeat the "C - r - a", or, call out any number of random letters.

But that's not what happened.

Instead, Hayden answered, "Dad!"-- as in the name, not the letters.


The truth is I am often spelling my name on the phone. It's the same thing every time... "Cara... with a C... C - a - r - a... Capela... one p and one 1..."

Dan is sometimes misunderstood for "Stan", but he can say "Daniel" & then it's understood that he is saying "Dan". My name, however, is often misunderstood for countless other names... & even when people do get the "Cara" part right, they'll still ask, "K - a - r - a?"

If I think about how many times I have spelled out my name over the course of Hayden's life, when he was within earshot... I can't even begin to estimate a number.


So, yeah... Hayden can count.
He is a visual learner.
He is an incidental learner.
He is always listening.
He is retaining the information he "incidentally" sees or hears...


He is Hayden. And he has fragile X syndrome. And he is a great learner.

--
July is Fragile X Awareness Month! And all month long, we're gonna
 Let 'Em Know
--

Thursday, June 26, 2014

sonshine

This is a long-ish one... with a lot of links... but I've fallen behind on posting Hayden-specific updates...

Aside from a recent brag post for a dear friend & her courageous, incredible book
... it seems several of my updates have been of a more serious tone lately ... the most recent is a completely sarcastic segue into a lovely complaint altogether.

Therefore, today I am sharing a long overdue breath of positive fresh air... for the most part... (doesn't that count?) :)

Last weekend we celebrated H's 9th Birthday-- I purposely kept the guest list small because I knew we would be having it at the house. Of course with all of the repairs to our home which kept getting delayed, one might think why would I do that... but it's because of those repairs that it also wasn't the best time to host his birthday elsewhere, which would cost even more money.

So in case of unfinished repairs and/or bad weather, I needed to make sure we could accommodate everyone. Hence the small guest list... which I actually still feel bad about, because Hayden is so social we only want to encourage that. Not to mention his birthday last year had a hint of a melancholy (if you will), having been right after the time of my grandmother's passing... & this year his birthday was right on the heels of something else going on with one of my nieces, which has had everyone in quite a bit of a difficult state of mind. 

I only wanted to make the day as happy & awesome as I could. His week had been busy but a good-busy... the kids had Field Day, plus two class parties, & they also had a class trip to the zoo. Although Hayden didn't quite interact as much as I had hoped with his peers, his distractions were sweet nonetheless... mainly his new sitter who joined the trip for the day (so of course he wanted to be with her, but that's a good thing), & he was equally determined to remain near another little boy in his special ed class who was having a tough time. Hayden paid little attention to the animals but he LOVED the sprinklers & he LOVED the train ride (I'll refrain from recapping the awful meltdown on the long line beforehand).

At the end of the day though, he even picked out something from the gift shop which was not a car!


Sunday, the day of his birthday, things were going well so that was good-- mother nature was definitely on our side & my dad even figured out a temporary fix for the net on the trampoline. (Of course the new net should have arrived in time, but instead it was the day after the party.) We kept the menu simple--  burgers, veggie burgers, hot dogs, chicken, corn, watermelon, blueberries, & a couple of salads.

Hayden had a lot of fun-- he doesn't stop sometimes unfortunately, even when he truly needs a break-- but it didn't really catch up with him until the last hour or so. I've always said it's as if he simply can not accept his own state of tired sometimes. This can lead to a very loud, angry Hayden & a version of himself who could not be further from his true self... & one that I hate for other children to witness. So I basically said it was cake time & then shortly after began handing out goody bags to try & wrap things up.

Party aside, I must say though, I really can not believe that I have already been a Mom for nine years. Sometimes it honestly feels like we're just getting started.

This year has been a lot of trial & error for Hayden's treatment plan-- this holds true for recent years in general, but particularly this year because we were so close. At our final progress meeting of the school year, I collected input from 2 teachers & 3 therapists.

One of the global challenges reported is that Hayden's difficult behaviors are more inconsistent & more sudden, & seem to have fewer identifying antecedents. About once every 2 to 3 weeks he will experience a truly bad day all around... doesn't sound like much... but that is excluding days where things might be tough here & there.
I guess to be expected...
I also asked the dreaded question of how these behaviors are impacting him socially-- & obviously this answer is not great but it could be a lot worse: they basically summed it up by saying that it's not so much what other kids think of Hayden, as much as it is his ability to interact back. Which can ultimately affect the aforementioned, & is inexplicably frustrating because we know he can when he's in his regular state-of-mind.

So then when we got into more specifics about his learning, I asked how he was doing when his difficulty in regulating behaviors is not getting in the way...

And they said his fine motor is better... he will often do tasks for longer periods of time (when he is able to apply himself)... he has better articulation... & he is even listening quietly for longer periods of time, when the lessons are being taught from a text book (vs hands on).

...quite awesome...

They also said that if he's absent from science, for example (one of the classes where he is with his mainstream peers), that the kids will ask where he is. They said he is generally perceived as a joyful kid & he's well-liked.

But the thing I am most proud of, because we waited years to hear that voice of his... & to learn what his many thoughts are (because it was clear there were many running through his mind)... would be his consistent improvement in expressive language.

The speech therapist-- who also bought & read that book I mentioned-- said, "Hayden is my kid that I am most proud of." She is one of the few who have been working with him since he stepped foot in that school back in 2008... & she knew him before he could barely even babble... & she has witnessed right alongside us, his phenomenal language progression.

She recently applied for the Principal position, too. I didn't realize she was applying, & it sort of sucks that she didn't get the job (but it was a pretty sought-after spot, so I get it). But the day that she had an interview with the Board, she asked if she could share a couple of letters I had written to her over the years. I was so ecstatic that I think my reply sounded like a goofy teenager but it was truly an honor.

As the school year officially came to a close, Hayden's special ed teacher sent home a framed picture of him... I remember when the photo was taken, it was the day he returned to school after the dentist ... & he was doing so well they thought something from his appointment hadn't worn off yet :) when it reality there was nothing to wear off... (who knows what his surprisingly amazing disposition was all about that afternoon... maybe being done with the dentist?)...

But sensing the gift was something breakable I carefully removed the tissue paper labeled "Mom & Dad", & then saw our present:




The frame is certainly a great accessory to that big, cheesy grin. Isn't it?

Summer school starts on Monday & I'm sure I'll have plenty of new stuff to vent about, but for now... a little bit of sonshine. (I should paint over the "u", huh?)

--

Tuesday, June 24, 2014

summaAARGH

How psyched is everyone that summer has finally arrived! RIGHT? WOO HOO!

We've kicked that Polar Vortex to the curb, swapped our boots for sandals, & reached for the sunglasses... 


Kids are happily following in their parent's lead, as they skipped through their final days of school... 

--

Well, not in my world.

For starters, Hayden attends a much-needed summer school program called ESY (Extended School Year). But (a) it's only a couple hours in the morning, (b) the staff is different than the people who work with him during the regular school year, (c) there are far fewer kids (as most students do not need ESY), & last but not least... (d) it's summer school. BLAH.

Basically what this boils down to is an interruption in our day. We rush out the door & a few hours later he's home-- even earlier than a typical half day or early dismissal day.

By about 1pm he will have eaten breakfast, gone to school, come home from school, eaten lunch, & is ready to be entertained for the next 7 hours.


We enlist the help of a sitter until I can get home from work, but I am still on-the-clock when I return. This is hardly the perfect recipe for providing my child all of the attention & fulfillment he needs & deserves. Furthermore, most days of the week we lack a Plan B.

But if you think that sounds fantastic, wait until I tell you what happens after six weeks... no more summer school. So, we bribe the sitter for even more hours to cover even larger gaps of time.

Over the years, as Hayden has aged in & out of various programs-- all the while surrounding his ESY schedule-- Hayden's summers have included: home services for therapy, daycare, a few weeks of camp (which he attended with his sitter as his "Shadow Counselor"), or, services through a local special needs agency... to name a few.

Each option had its own issues, if you will, where certain aspects were great & certain things were not working for him (or us).

Nothing was just right.

Yes this summer there may be moments of picture-worthy joy, or carefree glimpses on lemonade days, with my sun-kissed kid frolicking around near the water's edge, waving a theoretic roasted marshmallow on a stick, while his father is relaxing nearby in an Adirondack chair... but Hayden truthfully only drinks water & is not likely to roast a marshmallow-- much less eat one-- & we're really not down by the lake much because during the week it's too difficult with our work schedules, & the weekends are usually busy with other family stuff.


Quite honestly, with the reduced school schedule & loose daily structure, summer's for us are kind of stressful. When that final school bell rings... it's as if I can hear it in my head... with a creepy inner voice... have fun for the next couple of months!

Maybe I should start counting how many times I am scared half to death by some nasty bug I find in our house.
Yeah.

How psyched AM I that summer has finally arrived! RIGHT?!

--
If you see a bumper sticker that says, "I'd rather be fighting over homework, air-drying cable knit sweaters, or cleaning snow off my car" ... then send me one.

--

Sunday, May 25, 2014

"Becoming Mrs. Rogers" Blog Tour


In case you have not already heard... Cindi Rogers' first book Becoming Mrs. Rogers is now available on Amazon.com !

I am proudly participating in the Blog Tour for her book, so here is some promo content which was provided to me to share...

The book was a labor of love for Cindi, as well as her husband, Chris. "The process has been a wonderful learning experience & will continue to be, moving forward," -Cindi Rogers

This book is a memoir about becoming parents, starting a family, & raising two sons with a diagnosis of fragile X syndrome. The timeline travels from birth to present day & covers different issues such as school, behavior, therapies, & day-to-day life. The book will take you through some downs but also some ups, only to come out with moments of joy & hope.

"It was an emotional journey for me while writing it, for Chris while reading it, and we hope for you, too."
-Cindi Rogers


The Rogers Family hopes you will consider sharing this with others who also might benefit from such a story.
And they would like to say, Welcome to the Fragile X Neighborhood!


I gave her book my own 5-star review & I'm confident you will, too!


**A portion of the proceeds from this book are being donated to the Rogers Neighborhood FX Family Fund. This Fund offers scholarships to assist families in attending the NFXF (bi-yearly) International FX Conferences.**


Becoming Mrs. Rogers is the true and heart-felt story of one couple’s journey into acceptance following a devastating genetic diagnosis for both of their sons. Their story, its highs & lows entwined with its wisdom & compassion, has been a beacon of hope for thousands of families struggling with fragile X & other autism spectrum disorders.


Fragile X is the most common inherited form of intellectual impairment & the number one known genetic link to autism. The symptoms associated with fragile x affect a child's entire world, including social & behavioral challenges as well as cognition & speech. Rogers not only tells her story but also gives advice for new parents, sharing facts about:


* the physical and behavioral characteristics of Fragile X

* the effects of Fragile X on learning, functioning, & daily activities

* medication & therapy


* how fragile X affects the family

Cindi Rogers and her husband, Chris, share the perspectives and tools they embraced in order to help their boys be as happy & independent as they can possibly be. It is a story of challenges, tears, joy & hope.


Cindi is the mother of two sons, ages 23 & 25, who are affected with fragile X syndrome & autism. Since receiving this diagnosis, Cindi has become a leader & symbol of hope within the fragile X community. Her positivity, creativity, & defining can-do attitude have inspired families & professionals worldwide. Cindi & her family have traveled to conferences around the world to present her innovative strategies, helping families not only to live with fragile X, but to also thrive. It has become her personal mission to share techniques to help families generate ideas that they can implement in their own world, while helping their children with fragile X syndrome to live happier, more independent lives.

Today, Cindi serves on the Board of Directors for Developmental FX in Denver, a non-profit that helps families just like hers learn to thrive in the face of fragile X syndrome. She lives & works with her husband and two sons in Littleton, Colorado. Together they love traveling the U.S. in their RV named Rocket.


"I met this handsome guy in Mrs. Johnson's 7th grade French class. He courted me for 8 years and then we married. I'm pleased to say that through tears, joy and challenges we have endured 29 years of marriage. It hasn't always been 'peaches & cream', but we've emerged as a strong, loving couple. I wouldn't have shared this fragile X journey with anyone else." -Cindi Rogers

Please enjoy being Cindi's neighbor on their journey...

Order your copy today!
--