Clouds, May 2010

Clouds, May 2010

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 !

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!

Sunday, May 18, 2014

otherwise okay

This weekend did not go as planned.

Friday was Dan's birthday, & since Thursday night we would celebrate with his family, we planned for the 3 of us to do something together on the day of.

This weekend would also be my grandmother's unveiling, on Sunday. The unveiling is a Jewish custom "to show honor toward the deceased & reflect the teaching that all are equal in death" (according to It is basically a graveside service to unveil the headstone. The grave marker, or monument, serves to honor the memory of the deceased & identify a place of burial-- that part is familiar for many. But according to Jewish law it is customary for the grave marker to be put in place & for an unveiling ceremony to be held within, & no later than, one year after the passing. Many families will wait until almost the full year has passed to do the unveiling, but it may be done sooner. The unveiling ceremony may consist of Psalms, a brief eulogy, removing the cloth covering of the headstone, & the Mourner's Kaddish (prayer in praise of God recited by mourners).

For me, the unveiling is more equivalent to paying final respects. It's a different step in the mourning process but it's also more closure. It's a chance to leave a stone.

I researched common explanations of this stone-placing tradition & it's part custom, part superstition, but regardless... there is a customary Jewish belief that stones "keep the soul down" (if you will). Rooted in the Talmud, the belief suggests that souls continue to dwell for a while in the graves in which they are placed. The grave is the permanent home to retain some aspect of the departed soul, so therefore stones are more than a marker of one's visit-- they symbolize the permanence of memory.

Again, according to, all explanations have one thing in common: the sense of solidity that stones give. I prefer the below paraphrase when comparing to the better known (non-Jewish) custom, of graveside flowers:

"Flowers are a good metaphor for life. Life withers; it fades like a flower. But the memory is supposed to be lasting. While flowers may be a good metaphor for the brevity of life, stones seem better suited to the permanence of memory. Stones do not die. When we place stones on the grave among all the souls whom God has to watch over, we wish to add the name-- the 'pebble'-- of the soul of our departed."

So at the unveiling I would have the opportunity to leave stones today-- one for GG & one for Poppy (H's special genetic link, & incidentally, he is & will be the only great grandchild with that uniqueness).

I sort of daydreamed that Hayden, very calmly & in a very grownup way, would place his own stone just as the rest of us.

So the original plan was on Saturday, with all of the family having traveled to New Jersey, we would get together at some point. This way the visit was not just limited to the unveiling & then a get-together at my parent's house afterwards. Especially with Flora & Gabriele only being there for the latter.

Well before the weekend even arrived, I learned that one of my mom's sister's was not going to make it to New Jersey at all, after ending up in the hospital due to severe pain from sciatica. Her other sister's flight was canceled-- but she was still expected to get here, albeit a day later than planned. I don't believe my Uncle had any travel issues per se, but I know one of my cousins had a major delay returning to the States. 

So, let's backtrack to Friday night-- Dan's birthday.

We (the 3 Capelas) learned of all the family travel hiccups, hoped for the best, & went ahead with our evening plans. It was raining quite heavily. We decided on a nearby familiar restaurant that has a particular dish Dan really enjoys. Hayden seemed to be in a pretty good mood, & off we went.

Everything was okay at first, but it soon became evident that Hayden was not going to eat his food. The food was not the issue-- he just seemed very anxious all of a sudden, & sort of uncomfortable. He began perseverating about leaving, & that was the beginning of the end. Overall he tends to do well in restaurants so this was just, for whatever reason, a sort of fluke thing I guess.

I tried bringing H to the bathroom thinking maybe his stomach was bothering him or something, but that wasn't it either. If I had to guesstimate, I would say we were physically in the restaurant for a whopping 45 minutes-- maybe 10 of which were fun.

Nighttime routine did not go so well either. He was refusing to clean up his toys & when it was time for lights-out, he would not stay in his room. Dan & I had originally planned to watch a Netflix movie together but that never happened. By the time Hayden was finally settled, we were too exhausted.

Saturday was a beautiful day. Aside from waking up to a bit of a toy mess in the living room which was still there from the night before, it was sunny out & the rain had stopped. It was slightly chillier than normal for this time of year, but the sky was clear & it looked like Spring should look.

It turns out that Dan's nephew & godson both had lacrosse games on the same fields on the same day. So the plan was that Dan would bring Hayden there, my Dad would meet them, & I would sneak in a couple of errands including grocery shopping while I could. Unfortunately our nephew ended up not feeling well enough to play that day, however, Hayden still enjoyed seeing our friends there & hanging with Pop Z. Afterwards he & Pop Z went for a quick lunch together & then came back to the house... to work on stuff, of course... including customizing H's new bike with a hitch
& fixing a broken drawer in the vanity in my bathroom (possibly not as fun as the aforementioned, but necessary).

In the evening though, for the third night in a row actually, Hayden was not complying with the usual routine at all. Long story short, the Netflix movie is still in its sleeve.

Sunday morning was relatively uneventful-- just busy. Hayden would be coming with us to the cemetery, but we felt he would be okay with that. I tried to explain in simple terms that it's where people are buried after they pass away. I believe I said something to the effect of: even though GGG is in heaven we can visit her grave. I said we would have a short service there, just a few minutes, & then we'd go back to Grandma Suzi & Pop Z's house. 

Although I think he does get it in his own way, Hayden only wanted to know if he could go in Pop's car after. I said yes & this made him absolutely fine with everything else.

We were about half way to the cemetery when everything on the highway suddenly came to a standstill.

This was no ordinary traffic for a busy day-- let alone a Sunday. A short distance ahead, when we got close enough to read it, a digital highway sign indicated we were about a mile from an accident.

Fifteen minutes later we were a half mile from the accident, but a lot closer than that to a nervous breakdown.

The unexpected standstill made Hayden anxious to the point of anger. Hunger & needing a toilet was not helping anything either. Although I did remember to bring food & snacks for him, he was no where near calm enough to eat a morsel of anything. Not to mention he would then need a drink & we still wouldn't be any closer to a bathroom. (And in case you were wondering, he is not a pull-over-on-the-side-of-the-road-&-pee-in-the-woods kind of kid.)

That is not something he would be okay with, never mind the fact there was no place to pull over on the stretch of highway where we were stuck.

I soon realized we were simply not going to the make it to the cemetery in time either. I had already spoken to my parents at this point & they knew we would likely just meet them back at the house.

The truth is, missing the unveiling left a little bit of heaviness on my heart.

Just a notable side observation-- nor here nor there-- but interestingly my mom, her brother, & her sister all named their first born daughters with a J: for GG's mom, Jessie.
Due to unforeseen circumstances & so on & so forth... out of the 7 grandchildren to GG & Poppy... the three first-born J namesakes were the only ones present for the unveiling.

Oddly I am finding a different sort of comfort in this symbolism & hoping that GG's soul does too.

I will one day place my own stone. I'll find one with a nice purplish hue. In the interim I know that GG continues to be at peace. Interesting how her burial was just before Hayden's birthday last year, & her unveiling was just after Dan's birthday this year.

One day last summer I inadvertently discovered that we still had her message on our answering machine-- (yes, we have one of those--) when she called to wish Dan a Happy Birthday. At the end of the message she giggled. I have it saved in a 3-second sound clip. I don't think I ever told anyone.

I guess it's like a stone for me.  


"There is something suiting the antiquity and solidity of Judaism in the symbol of a stone. In moments when we are faced with the fragility of life, Judaism reminds us that there is permanence amidst the pain. While other things fade, stones and souls endure."
--David Wolpe, of Temple Sinai in Los Angeles, for 


Friday, May 9, 2014

caregiver's day

Narrow roads lead up to where we live
The driveway is not, nor likely to be paved

The people & memories inside:
They make it a home at the end of the day

Our furnishings are not all new

Our meals are decent although not gourmet
As long as everyone is clean & fed
Far as I'm concerned, it's an OK-day.

The table may have some crumbs on it

Or my hair may need more than a brush & spray
No doubt my truck could use attention

These, too, may be part of a typical day

If toy bin contents are on the floor
And beds in two of the rooms were never made
The breakfast pan is still on the stove

Then maybe it's a smidge less than yesterday. 

We will put someone else's needs first
Our lives will continue to be this way

My son too will need some form of care
Right now, later on, on this & every day

I will take pride in how he's cared for

I'll proudly stand & advocate; have a say
If it's not right, we'll work to fix it
This will be the case, on any given day.

So what to the full laundry basket
Never mind the dishes, they won't run away
If the sofa cushions need fluffing,
Save the straightening up for another day.

Whether an X paired with O... by itself...

Or the gene that made us who we are today
Dear Caregiver of Highest Honor:
You are a notch above, each y-ending day.


Dedicated to all of the tireless Moms in the fx community, & to all others who give care, or parent a person with special needs.
With love & respect, Happy Mother's Day-- every single day,
Hayden's Mom


Tuesday, May 6, 2014

my lucky day

Well the good news is, my knee feels better & the kitchen is almost flour-free.

My good luck began two Fridays ago... the last day of H's Spring Recess (must be some sort of trend-- remember the 2013 Spring Recess finale

I came home from work less than 30 minutes before the time I would have to relieve the sitter. I also brought home a fresh pizza pie-- one of Hayden's favorite foods.

I was in a happy mood because things have been going well with the new sitter, & I was looking forward to regular schedule resuming that Monday. But unfortunately the scene I walked into was nothing near happy. 

As I walked towards the back of the house to put the pizza on the table, there seemed to be a weird, cloudy, quiet aura. Within seconds I noticed that my beige kitchen floor looked white, the burners on the stove were mighty pale, & the sitter's ensemble matched too.

She immediately began apologizing & said that he got hold of the flour while she was cutting up his chicken, & he kept saying he wanted to bake something.

My eyes continued around the room to take in the full extent of his wrath. The drying rack was on the wrong side of the sink, & all of its previously clean contents were now back in the sink. The mat that goes underneath it was saturated & so were the dish towels & two of the three oven mitts. The countertops felt like sticky dough. The cabinet where I keep the baking tins was slightly ajar, as was the cabinet that the pots & pans are in.

We are a good week & a half removed from the incident, & I am still finding traces of that flour mess... under the heating vent, on the cooking utensils, & in the drawer below the oven. I have since spoken with the sitter-- as I was mainly confused over the time frame of how he could make that colossal of a mess while she was cutting up his food-- & I learned that she was not sure how to stop him. Or if she could grab it from him, or try to restrain him to get the flour away, & so forth. So, we had a discussion to offer techniques, help her recognize antecedents, & give some insight into his tendencies. (Oddly, grabbing flour out of the refrigerator not being one of them!)

The next day I was going to help Hayden who was in the bathroom. But unbeknownst to me he apparently just doused the floor in disinfectant spray. Before I knew what happened I was sliding into a split of sorts, with one leg stuck under me & the other one a little too far ahead. Somehow I missed smashing my skull into the side of the pedestal sink-- which maybe I can attribute to being short. I am not sure. All I know is the next day my body reminded me that even though I might be just flexible enough to not break my leg in an attempted split (thank you fragile x gene hypotonia), I really should avoid doing them. 

So, like I said, the good news is my knee feels better & the kitchen is almost flour-free.

The bad news is, my short stature & thick-ass head of hair were very helpful traits this afternoon.

Hayden was outside playing in his sacred shed & apparently had a toileting accident-- the kind that looks as though his stomach was out of whack.

Our main rule with toileting accidents-- because out-of-whack stomach aside, they're going to happen with most people with fx-- is that he at least tell us. He understands what is expected of him & he does know how to communicate this. Whether or not he chooses to, is a different story. But honestly for the most part he is consistent about at least telling us (& luckily the need for this is fewer & fewer).

This afternoon I am not sure why he didn't tell me. But I need to be consistent as well, & he needs to be reminded that this is important.

So after I cleaned him up, I explained that we would be putting everything away outside & closing up the shed for the day. I did not raise my voice. I said we would go inside when we were done & then I'd give him some dinner, & he could even watch "Gas Monkeys" (Gas Monkey Garage, on Fast n' Loud).

I prompted him to help out as I started putting things back. I kept cleaning up but remained quiet. He was standing nearby doing something with his handtruck but essentially it was only task avoidance.

I finally put my foot down because we were nearing the end of the cleanup, & I explained that he needed to put the last few things back in his shed or I would take away his iPad.

He angrily shoved the cart & the wagon into the shed, bumping them into his little table... then he threw his utility bucket in, knocking over a small chair in the process... & as he picked up his backpack (a.k.a. leafblower) to toss that in too-- I got the padlock ready & started to slide one of the doors closed. This infuriated him because it was a definite signal to the end of his activity.

As I turned around to lean over & snap the padlock in place, I felt something brush my head. Then there was a thud. I looked down & apparently he had thrown about a two-foot long 2x4 piece of wood right at me. If I had been his balder, slightly taller father... things could have ended much differently.

(I suppose the same goes for the bathroom incident.)

Must be my lucky day.


Monday, May 5, 2014

sixth sense

The last time I signed-on to my blog, I started drafting one of those difficult posts. One of those posts when I felt tired of the fact that most things in my life, take a backseat to fragile X.

And, knowing that other people may notice this too.

But then last Wednesday happened. 

I had a meeting in the morning at a local Senate office, to discuss the prospect of introducing Fragile X Awareness Day here in NJ. Since 2010, the US Congress has officially recognized July 22nd as National Fragile X Awareness Day. Before that time & since that time, various other states have adopted the recognition as well-- the majority date observed is July 22nd.

I reached out to other NJ families in the fragile X community, to find out if anyone might be able to join me for the meeting. In the interim my father had offered, but I didn't want him to have to drive out. I prepared myself for the fact that I would probably have to go this one alone. So a day or two before the appointment, I reached out to a fellow parent of the NFXF Community Support Network, who happened to establish Awareness Day in her own state just last year. I asked for advice on talking points (thank you, Holly!)...

The morning of the appointment I sent an email to my Dad with the subject header "just in case". I included the address & approximate directions to the Senator's office in my District. Within minutes, he replied back that he was already getting ready. I was much calmer at that point, & despite the nasty, unseasonably cool, rainy Wednesday morning, I left the house feeling motivated.

I doubt the meeting could have gone any better than it did.

The Senator was extremely receptive to our efforts, asked a lot of great questions about fragile X, inquired on the connection to autism, & noted the particularly high incidence in our state. The Senator also asked where Hayden currently attends school, & listened with interest when I explained the program we have in place for him. He reiterated his belief that consistent parent involvement is crucial in the life of any child (particularly those who are otherwise disadvantaged).

I mentioned that my next stop that morning was going to be at the school, for a meeting with the new acting Principal. Following Hayden's IEP meeting, but prior to Spring Recess, I had sent a message to the interim Principal regarding follow-ups before next year. But apparently there was a transition some time around that week, where the interim Principal returned to her primary role as Superintendent. So therefore, a new acting Principal was now at Hayden's school. (The previous one retired near the end of 2013).

I mentioned the name of the acting Principal to the Senator, & it turns out he knows her! He asked that I extend his regards & shortly thereafter I was on my way to the elementary school.

When I arrived there was a very interesting-looking program going on in the gym, which I would later learn was a Weather Assembly. As it turns out Meteorologist John Marshall from CBS (& formerly NBC), was there presenting. Near the end of my meeting with the Principal-- which I'll get to in a moment-- the woman from the front office knocked on the door. I didn't realize anyone was standing with her, but Mr. Marshall just wanted to thank the Principal before he headed out. I immediately recognized him from television & offered to take their picture. (Then of course I asked for a photo opp of my own.) 

I introduced myself & handed him my fragile x business card. An uncharacteristic move for someone like me, but it felt good.

Yes, I forgot to take a picture with the Senator... but at the end of the day I have this to show :)

Anyway, back to my original purpose of stopping at the school, my second Wednesday morning meeting also went very well. Before she & I even got down to business, I mentioned I had just come from the Senator's office & what I was there to discuss. The Principal seemed genuinely interested. I was beyond pleasantly surprised & grateful that she would offer support.

One of the agenda items I spoke about was putting a date on the September calendar, for my annual fragile X talk with staff. Every year there will be new people working with Hayden & my son may be the first & only time they ever teach a child with fragile X. I just feel it's helpful for me to give them a brief overview, & insight into his learning style. I realize he is only one of many kids they have in their class that year but if I don't remain involved, then they might not know how to, either.

In previous years the fragile X talk has taken place during a Teacher In-Service day, near the start of the school year. Well, the Principal had a wonderful suggestion to schedule the talk during the first Faculty Meeting instead... because then everyone will be present, including Aides.

I am thrilled over the idea, & beyond grateful that she is so receptive to this! Also as per previous years, I will be asking the Gen Ed teacher for a visit to their class for similar reasons. I usually read the students a book which talks about people being the same on the inside, even if they're different on the outside. This year I will also bring brochures with kid-friendly verbiage, on how to approach & interact with a child with fragile x.
Following our meeting, per her request, I emailed the picture I took of her with John Marshall. I added a short little note that it was nice to meet with her & so forth.

She sent a reply which, after the way I'd been feeling lately, pretty much helped me stand taller:
"You are a special person and mom. Don't hesitate to ask for my assistance in any endeavor from school to the state."

From someone I barely even know.

A lot of things in my life take a back seat to fragile X. But maybe I have a sixth sense for what really matters.