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.

Saturday, April 12, 2014

from the DMD to the IEP

The building itself is big & corporate-looking, but it's nice nonetheless. Their office is on the 2nd floor & Hayden enjoys taking the elevator (quite unlike is claustrophobic mother), so that part is fine for him.

We had only been there one other time last year. The waiting room is clean & colorful & a good size. And the "wall" dividing the sitting area & play area is actually a gigantic fish tank.

Inviting wall art, too, & cute tooth stools. Also as you can see, Grover came along for bravery reinforcement.

I was very proud of him for being so calm. In an attempt to create a social story for him on his iPad, I continued to take positive pictures of him in a setting that is often quite the contrary.

I was most impressed when he eventually, willingly, sat in the patient chair. He even smiled & posed:

But what's equally fascinating, is that he voluntarily removed his hat & put Grover to the side, when he sensed it was time to get down to business.

 I was just speechless at this point... even more so when he allowed the dentist to interact with him a little bit. I actually caught this pic of H smiling with the man. Unfreakingbelievable.

Unfortunately, however, as soon as the latex gloves went on & the dentist asked Hayden to lay back, that was the beginning of the end.

But again... the fact that the end did not begin until then, is actually a tremendous success. The is hands-down one of the most anxiety provoking environments for him so even though we barely got through the beginning part of the exam, & it ended there, I have to count everything leading up to that as serious improvement.

The best part is I later found out that he did such excellent work at school that day (?!), they assumed he was on something from his appointment that morning. (Ha!) Definitely one of the most unexpected & confusing things I've heard in a long time. But I'll take it.

So speaking of school, the other big event this week was his annual IEP. That morning I sent him to school with little Teacher Appreciation goodie bags, because it was Day 5 of WOYC (Week of the Young Child), a NAEYC program (National Association for the Education of Young Children).

Here are Days 2 through 5, because we missed Day 1 (which was upsetting when I saw it was Purple). These are the other 4 in order of appearance:

And here are the goodie bags for Teacher Appreciation:

The IEP may have been the same morning that I sent him to school with those little goodie bags, but I deny bribing. However I can't say the same for the bagels & juice I walked in with.

The Gen Ed teacher spoke first. He shared that Hayden is finally interacting with him more & using his name. (I took the opportunity to look at the Case Manager for a second & reiterate that transitions can take a fair amount of time for Hayden to adjust. I was planting the seed for a later segue regarding a meeting with next year's Gen Ed teacher). He also said that although Hayden needs help sharing materials during Science, in some ways this is an improvement from beginning of the year. At that time he was uninterested altogether... vs now... apparently he wants the materials for himself. And sometimes his speech needs to be maintained at a lower volume, because the teacher feels like he is speaking over Hayden. (I could see that)

When his Special Ed teacher spoke, she said although Hayden is (unfortunately) once again demonstrating a refusal to attend to task sometimes... his overall behavior is definitely improved. He is more easily recognizing when he's feeling overwhelmed. Furthermore, he takes less time to calm from the incidents. We also believe that his new treatment regimen is helping him transition better.

Sometimes there are isolated circumstances when his inability to regulate will escalate to a meltdown. He may take it out on his Aide. They're also using techniques to get him to recognize this & remind him it's inappropriate. The teacher prompts him to apologize in such incidents (after he has calmed), but he doesn't like doing so. Therefore she recorded "sorry" & encourages him to use the button... which he doesn't always do, but she can make it incidental by pushing it towards his hand (insert me shaking my head at him).

So if he is in meltdown-mode, they will remove him from the situation so his peers do not see him like that. They have a quiet spot to bring him to so he can sit (with some sort of partition to maintain a level of privacy), & allow himself to essentially get it out of his system.

A noteworthy detail though, they've observed that even if he's having a tantrum, he now speaks in full sentences. You can't blame the speech therapist for being somewhat proud of this. When it was her turn to share progress & goals, she had a lot of great updates to offer as well. I always love her notes because she is awesomely observant. Such as, noting:

  • He asks questions during structured activity
  • He uses conjunctions now, such as "but"... I am hungry but I don't want that one
  • He correctly uses phrases such as "that's not the point"
and my favorite:
  • He can recognize if she doesn't understand what he says
  • He will say it in a different way so she does understand
    (insert big smile:)

Right? Because he is a happy, eager-to-learn, goofy guy.

And despite the fact that it's a continuous adjustment for me, that these are the ways we must measure Hayden's progress...
I do live for these "WOW" moments (to quote his former teacher), & I am grateful to experience them.

He loves life. And that's what matters.

The other night I went into his room because it sounded like he was talking to someone.

This is what I found.

(See what I mean?)



Wednesday, April 2, 2014

green or blue?

Did you wear your blue today? April 2nd is World Autism Awareness Day, so people everywhere are participating to Light It Up Blue

(& National Fragile X Awareness Day is July 22nd... so you might as well mark your calendar now, so you remember to wear your green)

I am not the most knowledgeable person on the topic of autism. I know some facts & I understand some of the treatments, but I do not live with autism (as far as I've always known)...

I do however live with a son with fragile x syndrome (fxs)... which just happens to be the most common known (single-gene) genetic cause of autism. Click here to read more about that.

Approximately a third of all people diagnosed with fxs also have autism. At a recent checkup with one of Hayden's specialists who is monitoring his current treatment plan, the doctor asked me when Hayden was last evaluated.

She also asked if I knew about the latest criteria.

The last time Hayden was evaluated was several years ago when we visited the MIND Institute
, & at that time they were using a new criteria scale.  There are two details I remember:

1. The scale began at the number 12. Any score below 12 was not on the autism spectrum & any score at or above 12, was. I am not sure how high the scale went, but I do know that autism is a very broad spectrum so I imagine it is quite high. They said Hayden scored a 12.

2. We were told this was because of his gaze avoidance.

Although some of the circumstances which often trigger difficult behaviors in Hayden are closely related to similar triggers for a person with autism, I do not agree with the specific "gaze avoidance" criteria.

One of the main reasons why Hayden was not diagnosed sooner, was because he has always been so engaging
. Excellent eye contact... laughs when appropriate... cries when appropriate... displays empathy... very loving... & loveable. It seems everyone expects the complete opposite though-- particularly when global developmental delays are evident, & they are trying to determine a "hidden disability" (such as fragile x or autism).

Our visit to MIND was for both evaluation & study participation. So this was a reciprocal exchange of information, & therefore it was rather intensive & tiring. Both the facility & the people who fill it are equally pleasant, but it was a lot to cram in during such a short trip.

So if you ask me the gaze avoidance that the folks at MIND witnessed, was a combination of jet lag + strange place + unfamiliar people + a lot of participation expected, etc... which is basically a recipe for = leave me alone.

Back to Hayden's recent checkup...

The neurodevelopmental pediatrician shared the latest autism criteria. She explained that the medical community is evolving from the separation between autism & Asperger's syndrome... & that all related disorders are now going to be classified under the autism spectrum. The diagnosis code is DSM-5 in case you were wondering
(also updated from the Roman numeral V, which she hand-corrected for me, on a printout of the diagnosis criteria).

Hayden's challenges also include Sensory Processing Disorder. Furthermore, familiarity with routine (including people, places & tasks) helps him be at his best.

I have never really thought about Hayden having much of anything to do with autism. And the last thing in the world I want is another diagnosis for my son.

But let me tell you this much... (& I am borrowing this quote that I have seen all over social media because it is SO true)... the discussion with the doctor made my heart see something that my eyes may have been missing.

So for my readers who are sort of opposite me because they know autism and/or live with it, but not fragile x... I'll just throw this out there...

Fragile X Syndrome is the most common known genetic (“single gene”) cause of autism. - See more at:
Fragile X Syndrome is the most common known genetic (“single gene”) cause of autism. - See more at:
Fragile X Syndrome is the most common known genetic (“single gene”) cause of autism. Other genetic causes include deletions of chromosome 15q, tuberous sclerosis, PKU and other rare genetic conditions. - See more at:
Fragile X Syndrome is the most common known genetic (“single gene”) cause of autism. Other genetic causes include deletions of chromosome 15q, tuberous sclerosis, PKU and other rare genetic conditions. - See more at:
Fragile X Syndrome is the most common known genetic (“single gene”) cause of autism. Other genetic causes include deletions of chromosome 15q, tuberous sclerosis, PKU and other rare genetic conditions. - See more at:

(thank you, M, for sharing the awesome pic... & sorry for correcting the typo <3 blame it on my genes)

Tuesday, March 25, 2014

lovely light

I signed in to my blogger this evening to write about someone I did not know very well. She was 42 years young & passed away today following an 8-year battle with cancer.

Shannon Hope was the youngest of five & she is survived by one brother, three sisters, her husband, & two daughters: Katelyn & Erin.

She is also survived by her parents Ronald & Beverly.

Beverly (a.k.a. Aunt Bevy), is my grandfather's younger sister-- my late maternal grandfather, Dr. Francis Rosner (a.k.a. Poppy Freddy).

Poppy Freddy is actually the link to that very unique gene in our family.

I had a dream about Poppy Freddy last night & I do not remember the last time I had such a vivid dream about him. It was so unbelievably real & it was a very happy dream, even though I somehow knew that he wouldn't be there when I woke up.

The dream-- to loosely summarize, as bits & pieces were extremely odd the way dreams can be-- was about all of us spending a long weekend together. We were staying at a place that my grandparents owned, which looked nothing like any of the places they actually owned in real life. During some parts of the same dream I was a young child & in other parts I was an adult. The "scene" I remember most was the first morning of the long weekend & in this portion of the dream I was a child. Poppy Freddy just finished brushing his teeth & smiled a bright, beaming smile in my direction. Quite strangely, in my dream I remember thinking we should take a selfie. We didn't, but I can clearly recall that very specific, odd detail.

I have no idea what the dream meant but Shannon had one of those incredible beaming smiles, too. She also had very beautiful auburn hair like Jenna's. Her daughter's carry similar stunning features like their mom & their grandmother (my Great Aunt Bevy). Sadly I have never met Shannon's daughters who are now 13 & 11, but I have seen many pictures.

I was connected with Shannon on Facebook but we didn't interact much. Then last year she sent me a short albeit beautiful message, when Grandma Gert passed away (Poppy Freddy's Gert).

The next time we exchanged messages was not until early last month. Jenna mentioned that she had recently reached out to her, which sort of gave me the courage to do the same. At that time the family knew that the cancer had spread & it's my understanding she was primarily on comfort care from that point forward.

So I wrote Shannon a message to say that we were sending our love... & 
that I wish we had kept in touch over the years... & I wish we lived closer... & all of the things we might tend to say.

Then I shared a memory from when we were children & the "Alabama clan" were up in NJ for some sort of occasion. I can still recall the restaurant & other small details, which I shared with her as well.

I told her that she is never far from our thoughts & we were sending lots of love her way.

The next day she messaged me a very heartfelt reply. She recalled the last time we saw one another-- which was more than a couple of decades ago-- when we all happened to be in Israel at the same time when she was still in college. I remember the trip but sadly I do not remember seeing her-- it was December of 1991 & I was a junior in high school.
She continued on to say, "I've never been good at fb but when I'm on I love reading your posts & feeling connected with you & your journey. Love you so much & that is something distance & time does not change. Xoxoxo"

I will always deeply cherish our brief exchange.

Earlier today her husband Kerry eloquently shared (outside of social media): "
With the most peace she's known in years, Hope has passed." 

He quoted a poem by Edna St. Vincent Millay:
"My candle burns at both ends;
It will not last the night;
But ah, my foes, and oh, my friends-
It gives a lovely light!" which Aunt Bevy & Uncle Ron added:

"Shoshana Chaya, our youngest daughter 
Shannon Hope, made such a Lovely Light-
didn't she?"

I did not know Shannon well, although she was very close in age to me, Jenna, & 2 of our (5) first cousins on the same side of the family. But I do remember her & still love her... & to quote her, that too is something which distance & time will never change.

She is survived by a large, loving family that is second to none. May peace we welcomed in knowing she is eternally comfortable now.
And may she watch over her loved ones the way they carefully watched over her.

Our thoughts & hearts are with you. xoxoxo

(Just a side note, when I opened my blogger to create this post I noticed my last entry was titled "hope for the best". Completely unrelated, that was a follow up to Hayden's Spring concert, but I had forgotten the title. It gave me chills because many of the people closest to Shannon, called her Hope.)


Monday, March 17, 2014

hope for the best

Shame on me for the delayed follow-up to last week's post, about the concert...
Although I'm pretty confident anyone who reads this already knows the ending.

If you're still wondering how he did, whether or not he made it up to the stage-- both times, when the 2nd graders performed solo & then together with the 1st graders-- this might help: (the link will open in a separate window)

FMB Spring Concert 2014

But it was so much more than that...

He mimicked the music teacher with his arms...
He enthusiastically turned towards his peers on the risers...
He clapped with the audience...
And several times he exclaimed, "thank you for coming!"

(Btw, all of this at an hour of the evening when he's usually getting ready for bed!)

I was/ am beside myself & in complete awe of him, & what he is capable of. His participation was a total 180 compared to last year (although I'd be proud & impressed regardless).

There were additional factors to get in the way this year as well... including the fact that due to the brutal, snowy winter we had, there was limited parking at the school. So without the use of the field, people had to park at the other elementary school & they were shuttled over. I drove to the school immediately following work & purposely parked my truck there ahead of time, so at least we'd have a vehicle nearby for a quick getaway (if needed). And the cold, rainy weather that night certainly didn't help.

But inside the school felt much different! By the way, Hayden said the Toy Story song was his favorite (You've Got a Friend in Me)

I want to add a heartfelt nod to his former babysitter who showed up to support him... it was a truly great surprise. And last but not least, to Grandma Suzi & Pop Z who somehow squeezed in an appearance the night before they were leaving for California.

And apparently Hayden's most obvious fans are not the only ones paying attention. This evening I
received an unexpected phone call from another mom whose younger daughter is in the same 2nd grade class as H. Apparently she just wanted to say that she's been meaning to call me because H did so well in last week's concert... & even though "he was his usual adorable self"... that he was so much more involved & it was really great.

Well I can not top that, but I will say my primary hope was that Hayden would learn he can do this.

So this time next year when I once again hope for the best, I think I'll leave out the part about expecting the worst. It's not applicable to my kid.


Wednesday, March 12, 2014

it's tonight

Here are pics from this time last year-- before & during Spring Concert:

Anyone who remembers knows the rehearsal pic on the left where H appears to be excluding himself (sitting beside his aide)... is quite the contrary because it actually took A LOT for him to make it to the front of the room. I was very proud & shared the progress on Facebook.

The pic on the right was taken just one day later, during the actual concert. If you happen to remember the post, it was a pretty huge deal (as you can imagine) & brought me to tears.

Here is a clip of him clapping to a little girl named Aniella (the link will open in a separate window):
2013 Concert

This year's concert is tonight.

The bad news is that we are already having a bit of a tough morning with him (although last night was even worse).

The hopeful news is, that so far he successfully participated in two(!) 1-hour rehearsals at school. 

For me, the Concert is less about him being included, & more about the fact that I don't want him to remember the anxiety. I don't want him to remember the crying. I don't want him to remember the throwing up. I am proud either way because he has come SO far.

But I would love for him to simply remember that he can do this.


Sunday, March 9, 2014

I thought I was his biggest fan

Earlier this week my parents & I participated in the annual National Fragile X Foundation (NFXF) Advocacy Day in Washington DC. This was my third year attending (including my first visit with Jenna, & my second one with Dan). This was also the second visit for my parents who attended another year as well.

It is a two-day event including training on Day One & meetings on Capitol Hill on Day Two. Day Two begins with a group picture on the steps of the Capitol Building. The constituents are then treated to an exclusive tour inside
, including a short address in the House Chamber led by Representative Gregg Harper from Mississippi. His son Livingston has fragile x syndrome.

The NFXF has a Community Support Network of volunteers (mostly parents) from all over the country. The photo on the top left is me with Paula Fasciano of the New Jersey Fragile X Community Support Group (whom I am a new Co-Leader alongside).... The top right is me & my parents with Representative Harper.... And the bottom picture is most of the NJ advocates assembled on the steps of the Capitol building. We were of course advocating alongside well more than 100 other constituents from around the nation. (There was representation from 30-something states!)

Our group will be addressed by Rep. Gregg Harper and possibly other Members of Congress in a special tour of the House Chamber. After a short address from Rep Harper, he will lead a short tour of the Capitol Building and at this time you’ll be able to take photos. - See more at:
Our group will be addressed by Rep. Gregg Harper and possibly other Members of Congress in a special tour of the House Chamber. After a short address from Rep Harper, he will lead a short tour of the Capitol Building and at this time you’ll be able to take photos. - See more at:

If you have never been to Advocacy Day, you really should go!
Again, this is an annual event hosted by the National Fragile X Foundation & it takes place in early March, when Congress is considering the federal budget for the following year. We advocate for support & to maintain funding. Although the experience may sound intimidating, any hesitation will ultimately be outweighed by a complete feeling of empowerment. Everything we need to say (along with how to say it) is discussed during training the day before.

We returned late Wednesday evening... & with work, school, & the regular daily grind resuming the next day, I have yet to finish unpacking.

So yesterday when the annual (non fx-related) Wine Tasting Fundraiser had finally arrived-- hosted by our local Education Foundation-- I felt entirely too tired to go.

I also wasn't sure who I would know there, & I wasn't in the mood for wine tasting. But being a newer member of the Education Foundation-- not to mention I only bought a ticket to the event so I could volunteer-- it would have been wrong if I didn't go. So after dinner I changed into something a bit more presentable than my regular weekend garb, & I headed to the event. Solo.

It takes place in early March each year when Congress is considering the federal budget for the following year. - See more at:
It takes place in early March each year when Congress is considering the federal budget for the following year. - See more at:
It takes place in early March each year when Congress is considering the federal budget for the following year. - See more at:

By the end of the night, the Education Foundation raised more than $13,000. The various auction items were donated by many local businesses, but also included awesomely creative contributions from teachers. For example a lunch date, bowling, swimming, cooking, teaching gym class for a day, & so forth.

Although I put in & lost a bid for the bowling (we love the teacher who contributed it), I did walk away with a $25 gift certificate to a local jewelry store... & also some leftover wine which was offered to the volunteers.

But my favorite part was talking to some of the parents & staff from school who were there.

Especially a fellow parent of one of H's classmates who appreciated hearing a little about Hayden & fragile x, & commended me for speaking with staff & students every year...

Then there was one of the primary organizers of the event, who knows Hayden from subbing in the Special Ed room... she's the one who nominated him back in the fall for the Random Acts of Kindness Award when he won a Certificate of Appreciation...

So I finally offered her a very belated (albeit heartfelt) thank you for thinking of him, & for nominating him. She said something to the effect of, "I wish I could nominate him every day, I love your son so much!" She also went on to say they have their own thing (with their H names) & when she sees him, he announces she's "in the house!"

I even had a short conversation with the husband of one of Hayden's former teachers... & he told me that he owes Hayden lunch. He said the last time he saw my kid at school, H said they should do lunch... :)

But there was another teacher there who used to be on staff at H's school & is currently placed elsewhere. I know of her... well, we may have met once but I remember her more by name. This woman could not say enough about my son... it was obvious she misses him so...

She last saw him at the annual Craft Fair back in the fall, & as I understand it he was trying to run her carnival booth-- which she loved. But because I was tending to my own table I missed most of the show (Grandma Suzi & Pop Z were following him around that day).

Anyway, she was at the fundraiser last night with her husband & mom who both apparently knew of H... & her mom who never even met me (or my son) nearly brought me to tears, when she said with everything she's heard about him it says a lot about the parenting, too... <3

Among the little chats I had with parents, teachers, & so forth-- despite the fact that most of them already know H, there were many I was only speaking to for the first time. I was also introduced to many spouses & friends with a simple, "this is Hayden Capela's mom".

He really is the Mayor, & now he's turning me into his campaign manager.

But more importantly if all continues to go well, I hope I am only ever famous by association.


Monday, February 24, 2014

cover art

I have not blogged in about 3 weeks, which is a lot for me, & actually the last time I wrote an update it was more of a comedic break from cabin fever vs a real update. 

It turns out in addition to the insane amounts of snow this month, following last month's polar vortex, we were also dealing with some nasty colds circulating through our own house-- including one turned bronchitis (that would be me).

So Hayden was in school on February 6th (although it was not even a full day because of a delayed opening)... then he was out sick on the 7th, & following 10+ more days of sickness, snow, & a couple days of February Recess... he finally returned on the 19th. It was a short week as-is & last Friday capped it off with another unexpected early dismissal. (That day however was due to a roof leak at the upper elementary school, which meant a dismissal for both schools, because of bus schedules. Awesome, right?)

Today was therefore the first day of hopefully his first full week back at school, since the beginning of the month! Also, the Second Marking Period Progress Report arrived in the mail today... but I'll get to that in a second.

During last week's (barely) 3-day week, lots of papers were sent home because teachers were playing catch-up. Among the papers there was a flyer for the 1st & 2nd Grade Concert Cover Contest. The cover is for the program of their upcoming Spring Concert, & Hayden's (entry) was tucked in the "Keep at Home" side of his folder.

The first thing I noticed was that he did a really great job making his H's in the designated drawing space.

The second thing I noticed was that it said to return to the art teacher... on a date that has not yet passed.

So it was then that I realized Hayden's drawing of H's would not be in the running for the winning cover, because otherwise they would not have sent it home.

I wrote a note to the teacher in our communication journal which read, "Hayden did a nice job writing his H's on the sheet from Mrs. S for the Cover Contest for the concert. Did he also submit one in school? I know it would not be chosen but it's nice for him to participate. :) "

She replied, "The cover that was sent home was the one he was to complete & send back in."

Therefore the answer to my question would be "No", because I have the only contest flyer that Hayden drew on.

The logistical side of me obviously understands that the teachers would not very well choose a program cover that looks like this:

Furthermore, other people would certainly not understand it out of context. They would never recognize that he made controlled, straight lines & even tried to elongate them & condense them to appropriately fit within the space.

Such an odd cover would need a footnote at the very least. And what could they possibly put that would be fair, anyway? "Abstract H's by Hayden Capela"? Would they put the name of his Special Ed teacher or the name of his Gen Ed teacher? Both? Wouldn't the other students who drew recognizable designs be confused & possibly bothered that these random lines were chosen over their well-thought entry? Or what if, even worse, he would get made fun of for having his name attached to this visual?

But the Parent, Protector, & Advocate in me can not dismiss the fact that his entry is still his. Those are his H's & that's what he knows how to make.

Maybe I was just bothered because it felt like a little slap in the face... it was another little reminder that there is actually a difference between a participant & participating.

But as I started to say earlier, his Progress Report also arrived in the mail today. On page 15-- (yes it's long, including input from several therapy areas & two classroom teachers)-- but on page 15 is Social Studies. Long term goals include principles of American democracy, etc... but a short-term objective is "Exploring basic concepts of diversity, tolerance, fairness, & respect for others".

Part of the comments section says, "Hayden is doing well.... He is always offering answers to questions about stories we read that pertain to these concepts. He also offers solutions for the conflicts in our stories when they deal with social topics such as teasing, leaving friends out, sharing, etc. Keep up the great work!"

My kid may not be the one carrying the title for the Spring Concert Program Cover Contest Winner... but I will proudly brag that he accepts
diversity... he demonstrates tolerance... he understands fairness... & he will respect others.

I guess I just need to remember this perspective because my kid is not the one who can draw well per society's standards... he is not the one who can sing well per society's standards... he is not even a typical 2nd grader per developmental standards...

But he is intuitive.
He is also kind & he is empathetic.
More importantly, for someone who does not communicate in writing & is still developing his verbal communication skills-- with incredible progress I might add-- he sure can get his point across regardless.

Here he is when he finally stood with his classmates (following rounds of anxiety) at last year's concert
... & actually clapping to another student ... giving attention to a sweet little girl who doesn't necessarily "fit" typical standards either.

The first thing everyone should notice is that he can get with the program. The second thing everyone should notice is, if this is what makes a kid stand out then he ought to win everyone's vote.

In the interim I've realized the would-be black & white cover can still be a cover elsewhere... ;)

Most people will not understand my latest Facebook cover photo, but does it matter? I totally get it.