Clouds, May 2010

Clouds, May 2010

Monday, December 17, 2012

we need to talk

It was one of the first few days of December when I happened to watch Lynne Ramsay's 2011 drama We Need to Talk About Kevin, based on the novel by Lionel Shriver, starring Tilda Swinton & John C. Reilly (as Kevin's parents).

I'm eerily in disbelief that I happened to see this movie & less than two weeks later an unthinkable horror occurred at Sandy Hook Elementary School.

(By the way, people of the web, it's not Sandy Brook Elementary, or Sandy Creek Elementary... it's Sandy Hook. And it's not Newton. It's Newtown.
A big difference one letter can make because I will tell you at first glance, when I saw that on TV, it felt as if my heart was going to beat right outside of my chest... my eyes did not catch that second "w"... & with the address of my son's school being "Newton"... I was frozen. My father happened to be driving some place, was also mistaken at first when he heard it on the radio, & nearly swung his car around to head up here. Until we each realized it was Connecticut, even if only a moment later, it was enough to be terrified on top of horrified)


The film I'm referring to unfolds from the mother's perspective, about her son who she suspects there is something very wrong with. As a toddler, in response to her vague concerns, the pediatrician tells her that Kevin is absolutely fine. Still the viewer is confused as Kevin displays a complete, deliberate dislike towards her & is downright nasty. But Kevin is also careful about when he acts towards his mother this way, & is subtle about doing so in the presence of his father. By the time Kevin is a young kid, not much has changed & the husband only reassures his wife that all children develop at a different pace... & that incidents X, Y, & Z were just accidents.

We know at the beginning of the film that it's picking up after something terribly awful has already happened, because this is evident based on all aspects of the mother's very sad life. But as the whole story is slowly revealed through flashbacks, I was already heartbroken & frightened before the movie was anywhere near its climactic, gruesome finale.

I don't even remember adding this damn movie to my Netflix queue. (Same thing happened last week when some lame-ass Hunger Games documentary arrived in our mailbox & I have zero recollection of clicking on such a thing.)

I wish I never saw this We Need to Talk About Kevin, & I do not recommend it... especially now... in the wake of everything... it would be entirely, entirely too difficult to remember it's a fictional story. I actually wish Netflix would at least temporarily mark it as unavailable or something.

Even last night I was a little bit emotional over the thought of sending H to school today. And then when he safely arrived home this afternoon, I tried to shield my overwhelming sense of relief from the van driver because I didn't want to her think I'm a weirdo.

At one point late this afternoon, the school sent out a friggin instant alert stating to check the district site for a message from the superintendent. That's the same thing as saying, "We have something urgent to tell you but go to your computer to find out what it is." I thought gee that's not unsettling or anything.

It was basically a generic memo about the safety protocols in place & so forth, but the timing of the announcement was hardly comforting. They should have released the notification later in the day after most kids were already home. In the wake of everything it was momentarily nerve-wrecking to get this random alert without any upcoming school event or snow falling outside.

So after Hayden arrived home I went through his backpack as I always do... I emptied any uneaten food, cleaned the papers out of the folders, & checked the communication journals. They reported another tough day today.

Going back the last 25 journal entries, 9 of them begin with "H had a tough time today". Four of those tough days involved a lunch room incident.

You see, for a child with fragile x that actually makes sense... a lunch room is busy, it's loud, it's smelly, it's loud, you sit unsupported on a bench, & ... oh, yeah... it's loud.

But H has been eating lunch in that very same setting for years. This has never been an issue. However, during recent weeks it seems as though everything is an issue.

I sort of understood his challenging behavior near the end of November... when everything in the wake of Hurricane Sandy was probably just catching up with him. Kids with fx are globally, developmentally delayed & in general that may include a delay in processing something unfamiliar. This wasn't just an 8-day power outage as far as Hayden's concerned. It was a complete disruption to his entire routine, & his whole neighborhood looked different. And for any child who thrives on familiarity, & on schedule, & on knowing what to expect, & how long something will take, & that things look the way they're supposed to... this was not only about stocking up on batteries & waiting in gas lines.

For WEEKS he was talking about the power, the generator, gasoline, trees falling, etc. Even after things were settling to a sense of normalcy. But after he stopped talking about the generator & all of those things, & he genuinely seemed to have moved beyond thinking about the storm, I would still witness these outbursts at home & learn of similar behaviors at school.

We've actually had a Behaviorist working with us at home-- she is here twice a week after school & has the opportunity to observe him in school as well. The good news is that she really hasn't corrected me when we're working through one of H's meltdowns, & consistently tells me that she wouldn't suggest I handle it any differently. The bad news is she doesn't see how I could handle these situations much differently.

At least once a week Hayden's behavior will escalate into this sort of disorganized, chaotic state... he will almost whirl about forcing things out of place, like a familiar Looney Tunes character until he either exhausts himself, starts to re-regulate, or is safely restrained by one of us. Basically which ever comes first, but typically the latter. This requires a wee bit of persistence on our part, because he will use his hands, feet, limbs, & even his mouth to resist us trying to safely control him.

But never would this emerge unless in the presence of someone he is comfortable with, & he knows he is safe with.

Hayden's broken x-chromosome interferes with his body's ability to produce a specific protein... one which is not needed in most organs of the body. Yet one organ that does need this protein... is the brain.

So you know what? We have conversations, we write in the communication journal, we send emails, we have team meetings (just had another one), Dan & I bring Hayden to specialists, we get reports, we share them with the school, the pediatrician is kept in the loop, we develop plans, we see what works, we track, we revisit, & as needed, we start all over again... we constantly need to talk about Hayden and we do

I hate to use the term intellectual capacity in this context, but the fact is that people with fragile x syndrome do not have the intellectual capacity to orchestrate any significant catastrophe. Not only would they be incapable of such a thing from a motor planning as well as cognitive perspective, they wouldn't because they have HEART. Hayden demonstrates kindness, he knows how to love, he shows remorse, he wants to do well, & it's up to us to give him a chance to do so. 

On Friday & Saturday I recall the endless posts of complete shock, a devastated society shaken to its very core, people sharing photographs & quotes in honor of all those angels who rose from the school that day. Within a day the hot topic switched to disagreements over gun control. (By the way just a week or so before this tragedy, I actually saw a discussion over the mall shooting... during which someone made a comment, "that's why I pack this time of year." I think that speaks for itself.) Anyway, fast forward just three days removed from this horror & are we as 'One Nation Under G-d' actually pointing our finger at autism?

Not everything is so black & white because obviously not everyone has an identifiable defect in their DNA. But in
the wake of this unthinkable tragedy at Sandy Hook Elementary we need to talk about mental health education... we need to talk about resources... we need to make sure there is global awareness... we need to talk about the right to bear arms... we need to talk about antiquated laws & regulations surrounding this right (or lack thereof)... we need to talk about the media... & we may even need to talk about video games...

We need to address these topics with same level of urgency as bullying or hate crimes. A few hours ago I see this article pop up on The Huffington Post, reporting a significant surge in gun sales following Friday's massacre. There was bloodshed in an elementary school for crying out loud... & what do Americans do? They turn around & buy more guns & ammo. 

It is up to us as a society to halt our irresponsibly hasty reactions, to gather all information, & to have a civilized discussion. On behalf of the voices that can no longer be heard, we need to first use our own voices... not our hands.


Wednesday, December 5, 2012

poppy freddy

My grandfather adored babies. The day before Thanksgiving in November of 2001, when Dan & I saw Poppy on the eve of our engagement, I remember him in the doorway of my childhood home in Livingston. My grandparents arrived through the back door & had not even entered the family room yet, when the first thing my grandfather did was cradle his arms like he was holding a baby.

I was the first grandchild to become engaged & before he even uttered a "mazel tov", he wanted us to know his first great grandchild could not arrive fast enough.

My grandfather was a brilliant man & he was also a physician. I remember his Doctor's office attached to my mom's childhood home, & that of her three siblings. There was a door off the kitchen which led to the x-ray room & although I remember very little of the waiting room & exam rooms, I do recall a few occasions when Poppy removed his grandchildren's loose teeth from inside there. I also remember stories of us kids visiting him on the job at Hackensack Medical Center & my apparent curiosity in his work... such as the time I supposedly watched him stitch someone's finger back on following their motorcycle accident... as Jenna screamed & ran away.

I remember the way he ordered his soup at a restaurant. He would tell the waiter or waitress to make sure it was hot, & always specified temperature-hot but not spicy-hot. I remember he loved rice pudding as much as me but he would prefer to hold the cinnamon. I remember he loved chow mein, & I remember where he sat at the dining table in their old Victorian home: at the head on the opposite end from the doorway to the kitchen. I used to sit on the side opposite my grandmother's hutch. I remember many Passovers, when he skillfully pulled off a very believable Elijah presence.

But I also remember as I grew older so did Poppy. His handwriting became shaky, he was unsteady when using utensils, & over the years his balance & ability to walk were affected. As his motor functions declined over time, he went from using a cane, to needing a walker, & eventually a scooter. Mentally he was completely aware & understood he did not have Parkinson's, but at the same time the doctors did not know what was causing his tremors. His symptoms were ultimately chalked up to excess fluid of the brain due to natural aging. He had continued physical therapy & following surgery to drain some of the fluid he exhibited temporary improvement, but the tremors returned & when they did they were more severe.

In January of 2005 we visited him in the hospital in Portland, Maine to say our goodbyes. I told him the two names we chose depending the sex of the baby, & he mouthed to us that they were "beautiful". In June of 2005, approximately five months following his passing, our healthy baby boy entered this world.

Today, December 5, 2012 would have marked Poppy's 95th Birthday. Although he never met H, or knew I was carrying a boy, he did know he had his first great grandchild on the way & that in itself means more to me than I can put into words. It's an invisible bond that I am so fortunate to carry with me. Little did we know, that the year following Hayden's arrival, we would also learn that my son & grandfather share a very special gene as well.

Hidden in his DNA, & oddly in his very own name, Dr. Francis X. Rosner carried the FX gene. Four out of his seven grandchildren had a 50% chance of receiving this gene, but I was the sole lottery winner of this special X. This would all be revealed through our son Hayden, when he was diagnosed at 17 months of age.

As of last week that was six years ago. Although I can not begin to summarize the education we have gained during these last six years, I can tell you that it includes an answer to Poppy's symptoms called Fragile X-Associated Tremor/Ataxia Syndrome... commonly known as FXTAS (pronounced 'fax-tas'). FXTAS is a trait of male carriers of fragile x.

You know, to an extent I believe in the idea of a presence watching over all of us. Poppy, if this is true you will already know that lately we've had a difficult time with Hayden. Even just the last couple of days have been pretty rough. I thought about venting via my blog, but this time I decided against it. Writing is often therapeutic for me, but other times it feels like I'm reliving something difficult & I'd rather move on.

We're still going through the process of finding an appropriate treatment for Hayden, to help with some of his difficult behaviors. (Including another appointment with a new specialist tomorrow, actually.) But I need you to know something. For every bad day, every challenging behavior, every meltdown, & every tear that is shed... it is all outweighed by an immeasurable love inside of Hayden. And I wouldn't be able to appreciate such a beautiful, rare perspective if it weren't for you.

Not all fragile x days are bad days. Most of them are filled with moments like last night, when I sat down on the couch & casually said to no one in particular that I was cold. Hayden was in front of the TV watching a movie in his PJs, with his Thomas the Train blanket. He walked over to me in response, placed the blanket on me, & then sat in my lap.

I have a son who keeps me very warm from the inside out, & we have you to thank for that.

Happiest 95th Birthday to you, Poppy. I hope you're on the balcony in Palm Beach in that yellow chair... relaxing in the warmth of the sun... listening to the ocean behind you... & enjoying the best back scratch you ever had in your life.

Tuesday, November 20, 2012

when it's my birthday, I'll beg if I want to

This week I am selfishly using my own blog about my son, for my birthday wish. Because in seven days I want everyone to participate in the first ever, Giving Tuesday.

This Tuesday, November 27th will begin a movement to create a national day of giving quite simply called Giving Tuesday. This effort is the first of its kind and aimed to sort of “nudge society past consumerism and towards community giving”… borrowing the words of an online article I saw, “A Perfect Antidote to Black Friday”.

Since the 27th happens to be only three days removed from my 27th birthday (or 37th, but who’s counting)… this is my wish. And if I may be so bold as to not-so-subtly hint at a suggestion… or two… your choice:

Both the National Fragile X Foundation ( and the FRAXA Research Foundation ( are tireless in their efforts to help and support the community people of affected by Fragile X. So this Tuesday we should support them, too.

Around the holidays the sheer number of charities promoting fundraising can leave us feeling almost helpless, as we lack the resources to respond to each one, and narrowing the list feels overwhelming. Not to mention this season of giving our hearts are with countless number of people who have been affected by hurricane Sandy, and indefinitely they will be kept in the forefront of our minds.

I am a born & raised Jersey girl and remain a resident today. Our home may appear unscathed but our hearts are not. We grew up spending the majority of our summers in Point Pleasant on our boat with friends and family. The first time my son saw the ocean was in Spring Lake, and the first real boardwalk he ever stepped foot on, was Jenkinsons. The original has been washed away but we will rebuild and we will move forward. And the latter is precisely what the NFXF wants us to focus on.

Hayden did not choose to be born with Fragile X Syndrome, any more than the homes affected by Sandy were chosen to be built in its path. He did not choose to be born with lifelong challenges, any more than people chose to have to rebuild their lives. And just like a hurricane and its aftermath, Fragile X continues to present us with the opportunity to come together for a common cause.

Hayden is like so many other children around the globe who have intellectual disabilities, sensory processing disorder, as well as speech and motor challenges. About a third of them are affected by autism as well. And this is hardly inclusive of the challenges they face every day.

For the first time in history, we— the community of people affected by Fragile X— are closer than ever to effective treatment options. Options specifically indicated for Fragile X Syndrome, and possibly even a cure. With ongoing clinical trials, the hope truly is on the horizon.

I hate that I have to worry about Hayden’s future because I’d rather worry about him becoming a teenager, and making ridiculous decisions. I wish I didn't have to worry about his safety, because I’d rather worry about him getting his driver’s license. I don’t want to worry about supporting him because I’d rather worry about his financial independence.

I want my kid to grow up, date the wrong person, mess up when he parallel parks... then one day, land some sort of cookie-cutter job in corporate America, quit it, & pursue something unrealistic... then announce his sudden engagement, plan a wedding on an accelerated timeline, bicker with me over a seating chart... and one day, give me a wrinkled copy of his first child's first school picture because my grandkid crumpled it. Ultimately I wish my Hayden could become a grown man with his own family to take care of, while having to constantly tell his forgetful, aging mother, "I already told you that, Mom!"

The stages in life that most people expect for their child(ren), are not ones we can assume for ours. This is why your help matters, and I am
so grateful you have taken time out of your own day to hear me out. You have given me hope, & now you can pass it on to Hayden:

Please keep the momentum going... we have seven days to spread the word! One week from today on November 27th  together we will witness the first ever nationwide Giving Tuesday. I hope you participate by visiting and/or ... because your dollar will help turn that hope on the horizon into a reality.

Thursday, October 25, 2012

the patch

October 13, 2012
We finally got the patch on H!
We had been waiting for summer to end (between swimming, sweating, etc, nothing to affect it staying in place)... then we were waiting for a long weekend when we would be able to give it a few days... otherwise the pediatrician said it would not be enough to gauge the efficacy.

Finally before Columbus Day weekend we were going to give this a go, but H developed a nasty cold the Thursday prior. He didn't even return to school until the following Wednesday (he has never been out that many days in a row; he's one of those kids that gets an attendance award at the end of the year).

So the weekend of October 13th became our next try. With Dan attending a golf outing that Monday, we would be able to get three days in with both of us home at the same time in the morning to hold Hayden steady & apply the patch. I also wanted Day One to be when we were home & not doing much, & therefore able to really monitor him.

The patch was on for a good nine hours so for that alone I am grateful. Things started out rough because he would not sit still, so when I put the clear sticky film over the patch (the one the pharmacy had to special order which also delayed our inaugural attempt), it crumpled in one corner. It is difficult enough in itself because it is so thin... but with a moving target it's even worse. So in order to hopefully make sure the thing would still keep the patch in place, we used a second sticky square (an unforeseen detail which unfortunately made the removal process quite challenging).
After the first half hour or so he was finally OK... partially distracted by a run to DD with Gad. When we gave him a bath that evening I was able to get the patch off with baby oil gel, but it took a couple of tries. So at that point he already seemed worried about wearing it again.

However, trying to maintain the positive, the fact is we finally made progress. FIVE YEARS AND ELEVEN MONTHS after he was diagnosed... finally... some medicine in him. Hallefreakinlujah.
I tried to coach myself into accepting that whether this ends up being an appropriate treatment or not, as long as we get a few days in him we can finally say we tried this one. We would have a real point of reference & if nothing else when we see the next specialist in December, we will have one complete attempt checked off. 

As per our plan, the patch went on again Sunday morning but unfortunately Day Two (and Three) are not data-worthy. Turns out the boy who seemed a little tired Sunday was actually suffering from a stomach virus of some sort. (Conveniently, right on the heels of his nasty cold.) He missed a bit of school that week & then, to mirror the pattern earlier in the month, passed the stomach sickness along to his mom.

Finally this past weekend everyone in our home was well again. But having an important family event to attend, we didn't feel it was a smart time for more experimentation yet.

Then came Monday. Apparently there was a challenging situation at school but I would not learn about it until Wednesday.

October 24, 2012
The Principal calls me. Upon learning that the teachers hadn't yet discussed "Monday" with me, whatever that meant, he wanted to make sure I was informed.

I was told that Hayden's Aide had been injured. Today is now three days past the incident, & having spoken to the Principal, teacher, & Aide at this point I can better summarize what happened.

Hayden was completing a worksheet, had a break, & was being prompted to return to finishing his work. He was having a difficult time with this transition & began to rock the chair. To prevent him from getting hurt they held the chair still as best they could, but in his frustration he grabbed hold of the desk instead.

What I do know is that he did manage to partially lift the desk & move it, & when it landed his Aide's thumb took the brunt of the hit. Not thinking much of it, she tried to shake it off but it began to grow more discolored, swollen, & painful as the day went on.

She went to the doctor the following day & they confirmed it was a contusion. Her thumb was wrapped to limit the movement & help it heal. She is otherwise OK, & they all seem to agree it was an accident & Hayden had no deliberate attempt to injure her. More importantly, thank goodness no one else was hurt.

This kind of thing worries the ever-loving crap out of me. The mere thought of someone misunderstanding his behavior... people not knowing that each behavior is merely a communication... the mere thought that another child could have inadvertently been hurt... people not knowing that my kid is not aggressive... the mere thought that there could be anyone in his life who does not realize his kind, caring disposition... people not knowing what fragile x is & how this gene can scream SO much louder than my child ever really would.

So I put a lot of faith & hope in this medicine, & I put a lot of faith & hope in the clinical studies. Especially those who have qualified for, & are participating in the clinical trials. Those who are contributing towards the development of an appropriate fragile-x-indicated treatment that these kids SO deserve.

My son does not even realize that the wrap on his Aide's thumb has anything do with a desk that he was releasing his frustration out on. But we will of course try the patch again, & this effort will be continued...

Thursday, October 11, 2012

the talk

This little flyer was sent home with each of Hayden's first grade peers today:
My nervousness has certainly been heightened about this day. At the same time, at least my anxiousness was somewhat calmed by brainstorming different ways to be thorough about it. I wanted to make sure that if any of the kids went home and mentioned something to their mom or dad about fragile x, at least this way the parents would know what they were talking about.

I am very happy about the flyer idea and I hope that it's received well.

I introduced myself and told the kids that I was going to speak with them about something called fragile x, and about Hayden. I was happy to hear several kids acknowledge that Hayden is always smiling... then one boy said he saw Hayden "fall" down the slide at a classmate's birthday party & that Hayden thought this was funny... another boy said he remembers applesauce on Hayden's shirt (I told him that's because it's delicious)... and another girl said she went on the big trampoline at Hayden's house... and then the applesauce kid told me he can't have a trampoline where he lives... and then I tried to take a deep breath and regain control of the conversation...

I placed the book on the desk so they could see the story I was going to share-- called Special People, Special Ways-- but first, I wanted to talk about what we all have in common.

I said when we are happy maybe we want to play, but sometimes we're sad and we want to stay away. Sometimes we are hungry and we want to eat, and sometimes we are tired and we want to sleep. These are some of the ways that we are all the same-- we have feelings, wants, and needs and Hayden does too.

(That last summary point was actually something I learned when reading what other moms have used in similar presentations. I am SO grateful for all of the information out there, that other moms of kids with FX have shared.)

I went on to explain that even though Hayden looks like other kids, he sometimes acts differently because he has fragile x. I told them Hayden was born with it and he will always have it, but no one can catch fragile x-- it is not like a cold.

I explained that having fragile x means Hayden takes a little extra time to understand stuff, but he also has a very good memory. Fragile x means that he doesn't like a lot of noise, but he also loves to laugh.

We talked about Hayden being in the same homeroom as them, and how they also have gym, music, art, library, recess and other things together. But they've probably noticed that Hayden also goes next door to Ms Brady's classroom. I said this is because he learns at his own speed. I mentioned that Mrs. Sumski is there to help Hayden during the day, too. The kids all know Hayden's Aide of course, and they turned to acknowledge her. She sat in the back listening while Hayden was in speech therapy in another room. It was nice to have her there, and also comforting to catch her approving nods in the corner of my eye.

At this point I pulled out a Hess firetruck for my toy demonstration. The children were very excited when they saw it and I said this was the one from 2005. A young girl to my left excitedly added that was when she was born, and I happily said Hayden too!

I turned the different lights on the truck for them, and then they asked me if the siren was loud, and they wanted to know if they could hear it, so of course we turned that on... and everyone was definitely enjoying it. Then I pulled one of the batteries out. But I showed them how the ladder still works, and you can still turn the spotlight and pretend to shine it, and of course the truck itself will still move back and forth. Then I showed them how the back opens up and I pulled out two police cars that were hidden inside. I pointed out how it was still fun to play with, even though it was quiet.

At this time I introduced the book and after I read it, I told the children that Hayden learns just as much from watching them as he does his teacher. I made sure to emphasize when they work well in school and make good choices, Hayden notices and he will want to do the same. (Again, a great summary point which deserves a nod to other FX moms!)

I told them they can help by speaking clearly and giving Hayden time to answer, and when they see Hayden they can greet him with a high-five. I also said it's important to remember when it's time for playing games he might not understand the rules, but he will still want to join and have fun.

I told Hayden's classmates that he loves school and all of the people, and he is happy to see each of them every day.

Then I concluded by asking the children if they had any questions. One little girl said her 92-year-old grandmother wears a hearing aide (I'm thinking she meant great grandmother)... and I said my grandma is the same age and she wears one, too.

I told the children that Hayden understands everything they say, even though sometimes they might have a hard time understanding him. Then I said Hayden can hear so well it's almost as if he has 'spidey' senses... because all the different things that might be going in the room will make him turn and look. One boy said that even when he has his hands over his ears, and his fingers are close together, he can still hear when there's a loud noise. I told him that's right!

I knew we were nearing the end at this point, because this was also Fire Safety week at school; the firetrucks had already arrived and a bunch of the firemen were making their way down the hall visiting classrooms.

I thanked the children and then I gave them Halloween stickers-- the candy corn ones were a big hit, but everyone got their own sheet and there were many different designs. The teacher kindly prompted the kids to thank me and then they resumed their curriculum.

Afterwords, I stopped in the speech therapist's room to say hello to my H of course. He was ecstatic to see me, as he always is whenever I pop up at school. I offered his S.T. a brief recap, mentioned that the kids seemed pretty receptive to everything and that I thought the applesauce comment was funny. I actually told the boy who said it that Hayden brings an extra shirt to school-- to which the little boy told me he doesn't think Hayden wears it. I tried to hold in my laugh-- it was not in a mean way at all-- just very honest and funny actually. Especially because unbeknownst to him, Hayden often demands his second shirt just for an outfit change.

And then the S.T. pointed out if that's the biggest difference anyone is noticing about him-- with the applesauce-- that's pretty fantastic. Of all the other things that kids could notice, and we know they would innocently comment on if they did, it really is wonderful.

Overall the most talked about characteristic was Hayden's effervescent personality (using their own kid-verbiage of course). So not only are they a perceptive, bright group of first graders but more importantly... something tells me they are going to play a big role in keeping that very noticeable smile on Hayden's very happy face.

Friday, October 5, 2012

the 1st first grade team meeting

She gave me a hug (for the third time), and then as she continued in the opposite direction down the hall she spoke over her shoulder, "Remember what I said about the coffee and a book."

Hayden's former teacher doesn't know that I don't drink hot coffee but I thanked her and asked, "Can it be wine instead?"

She turned around smiling with this expression as if to say it should be a given, and confidently offered, "I was being polite

One of the many topics discussed at this afternoon's team meeting was carrying over behavioral services from school to home. The 'coffee and a book' comment was in reference to allowing myself some sort of respite, even if it's while the Behaviorist is working with Hayden. Reminding me that there is both a time for my involvement, as well as a time for me to go in the other room.

It was easily 4:00 already, and here she was on a Friday afternoon stopping to catch up with me following a team meeting. A team meeting which she did not attend as she is no longer Hayden's teacher. But she is still interested, she still listens, she still offers welcomed input, and she still gives me her calming, trustworthy reassurance.

I made one more stop in the first grade classroom where the teacher was still present for a Girl Scout meeting, which was starting shortly. I said I just wanted to thank her in advance for next week, as they have accepted my proposal to briefly speak with the class about Hayden and fragile x. She seemed genuinely happy to accommodate and offered how much she is looking forward to it. I lightly added that I hope I finish before Hayden returns from Speech and sees me through the classroom door window. My short presentation is not something he should be there for, as his presence would undoubtedly cause a mutual distraction throughout the room.

When I finally exited the school building, I smiled as I replayed the meeting in my mind-- not because we sat in a room for well over an hour and shared good news with one another, but because we sat in a room for well over an hour only to discuss how to help Hayden. Period. If you are going to have challenges to solve, and you're lucky enough to have a team like his to solve them with, then you hopefully have reason to smile.

Hayden was not feeling well today and missed school as a result. As concerned as I was for him, I was almost equally frustrated over the idea of possibly having to cancel this afternoon's team meeting. It took weeks to schedule something with all necessary parties involved, and between everyone's limited availability together with my even more limited time off from from work I was praying we could still meet.

Luckily Dan made it home from work in time for me to keep the meeting, and today was just as productive a school day as any other... even with Hayden being out sick. As a matter of fact a rare, positive side effect of Hayden's absence included his Aide being able to attend the meeting as well.

As a team we discussed his recent challenges with recess time being longer than previous years, causing hyperactivity, and Hayden consequently taking it out on his Aide. So we brainstormed ideas of switching around his therapy schedule to allow only some time outside but not too much. We discussed different "jobs" he could have since he loves to help, as well as ideas for bad-weather days. On another note we also addressed oral motor challenges and appropriate options for allowing him that much-needed input, as opposed to Hayden practically eating his own shirt of course.

I was just beginning to feel optimistic about the new case manager-- keeping in mind, this is the 3rd year in a row that we've had someone new due to budget restraints which left the district with an outsourced Child Study Team-- when the topic of a calming room came up. Sometimes Hayden just needs a quiet, comfortable, dim space to simply breathe and re-regulate. This concept is certainly not a surprising, novel idea by any means-- it is something we have spoken about over the years. We know there is a need for Hayden to have access to a consistent, safe, quiet area when he feels overwhelmed. In earlier years the very well staffed and self-contained preschool program afforded him this opportunity as needed.

Well using what resources are available now, recently Hayden's Aide tried bringing him to the O.T./P.T. room when it was empty. He peacefully swayed back and forth on the therapy swing, and with the overhead fluorescents left off and only natural light coming in through the windows, she was successfully able to bring him back from his meltdown to a much-needed state of calm.

That is until certain officials got word of her being in that room alone with him and more importantly, without a certified professional. I immediately asked the team what steps I need to take to advocate for her use of the therapy room with Hayden. Clearly the idea was effective and there's no arguing that he needs it. But apparently state law dictates that only a certified staff member is permitted to be in a room with him, without any other staff present.

No sooner did someone innocently bring up the fact that his former afternoon Aide is certified and would be able to accommodate his need for the quiet space. But she was only his former afternoon Aide and was not-so-conveniently reassigned to the upper elementary school this year (rather surprising to her and everyone else I might add). So once again due to the inconsistent staffing of the outsourced Child Study Team, a very important detail was completely overlooked on an administrative level... something which a consistent, familiar case manager would not have. And the previous coverage for Hayden's one-on-one, which had been consistently successful for many years, was now suddenly and inexplicably altered. HIP HIP HOORAY! Three cheers for budget cuts. 

So aside from the absurd challenge of solving a legally-friendly calming space for Hayden, our first team meeting of the year otherwise went well. I might not be ready to sit back, relax and focus long enough to enjoy a book... but luckily there is something to be legally enjoyed here.

Corkscrew anyone?

Thursday, September 13, 2012

red, white, & blue

Earlier this week our nation acknowledged the 11th anniversary of the terrorist attacks from September 11, 2001. On Tuesday Hayden's school encouraged students and faculty to wear red, white, & blue.

Hayden has a t-shirt that says "Home of the Brave"-- it is gray, but on the front it has a design of the American flag stars & stripes, inside of a star shape.
He knew that it was Red, White, & Blue Day at school and I explained to him that's why I picked out the shirt for him to wear. He always likes to see his clothes for the next day on his clothes tree, so since it was hanging there I pointed out the colors of the flag.

I wore a blue & white top and a pin:

The bottom pieces of the ribbon represent the Twin Towers and the back of the pin is embossed with, "Copyright 9/11/2001". Hayden noticed the pin while I was helping him get dressed and asked me about it.

I told him I was wearing it because I am showing support for America. I told him 11 years ago on this day there was an accident in New York City. Initially, he innocently answered, "that stinks." I agreed with him, and added that it was a horrible day or an awful day-- something to that effect. To which he asked, "What happened in that place?"

I told him that planes flew into buildings. In his own way, he asked why the guy flew the plane that way. I said because they were bad people and they wanted the buildings to fall down. My son actually asked me, again in his own way, how did the people get out. I said some of them made it down the stairs, and some did not make it out. "Smoke?" he asked. "Yes," I said, very proud that he understood. "Firemen?" he added. "Yes, there were so many firemen."

Later that day after school and work, he again pointed out my pin and we had a mini-recap of the conversation. It was brief, and then he started talking about something else.

Every year I wear this pin on September 11th and sometimes during the month of September, on and off. Hayden never asked about it before and I was glad he did, but I was also taken by surprise. I stalled for a moment because I didn't know what to say about the pin... do I just tell him it's the American flag and those are two buildings but leave it at that? Do I just say I'm wearing it for Red, White, and Blue Day, too?

In recent years Hayden is now grasping the concept of holidays but mainly the kind where there is some sort of gift involved. For example, I tried explaining to him why we were having dinner at Grandma & Poppy's on Sunday because it's Rosh Hashanah and it's the Jewish New Year. However, I could tell that wasn't really resonating with him and I just sort of stopped there... because to explain there are two different calendars... never mind.

But I think my child with special needs understands plenty:
He knows that on Tuesday, Mommy was wearing a pin. It has red, white, & blue in it just like the shirt he wore to school.
And he knows it is wrong to fly a plane into a building.

Yes, he understands just what he should.

Thursday, September 6, 2012

the invisible pedestal

So, about that workshop I mentioned in yesterday's first grade post... allow me to elaborate (tiny bits of this may be repetitive from a previous post or two):

I used my last day of paid time off for the 2012 calendar year, to participate in a fragile x syndrome informational session at H's school. During the final teacher-in-service day before the official start of the school year, we had an entire 2-hour block of time reserved just for this focus... the focus of my 7 year old son... my 7 year old son with fragile x syndrome... simply because I asked for the opportunity.

I was truly blown away to learn that Hayden's speech therapist of the past four years had put together an entire PowerPoint presentation. I entered the library yesterday afternoon and hanging from the ceiling was a large screen with the cover slide of the presentation already displayed, ready to begin. It was titled 'Fragile X' and in the bottom right corner was the name of his speech therapist, the name of his former teacher, and 'Cara Capela, Hayden's Mom'

And yes, you read that correctly: Hayden's former teacher who worked with him in both preschool and kindergarten and is technically no longer his teacher... but essentially out of the kindness of her own heart (and her adoration towards H), has remained involved in securing his education plan.

Anyway, the very impressive and thorough presentation included information gathered from some of the top specialists in the Fragile X community including Dr. Hagerman from the MIND Institute, as well as Dr. Sudhalter from the (most local) Fragile X Center at The George A Jervis Clinic of The Institute for Basic Research.

After paying me a very unexpected and generous compliment, Hayden's speech therapist opened the presentation by sharing something she remembered from 2008 when I first met the team of people working him at the school. She recalled, "Mrs. Capela said Hayden does not have autism."

And so began the portion on explaining the non-household-name syndrome, of fragile x. She addressed how fragile x and autism are connected, and how they are not, and which similar characteristics that Hayden may exhibit.

Then she and Hayden's former teacher spoke about his strengths (memory, sense of humor, and determination to name a few), as well as his challenges (motor skills, hyperactivity, and anxiety to name a few).

If you had been me sitting there... if you had seen the enthusiasm on the faces of these two amazing, admirable women who were standing up there in front of 20 or so of their colleagues, on behalf of MY SON... you just might get an idea of the gratitude which completely overwhelmed me. When the hour-and-a-half long presentation was through all I kept thinking was if there is even a soul in that room who was not receptive to this, for any reason-- because I know it's a lot of information to be presented with-- if nothing else, the heartfelt words coming from these two women would be enough to have anyone convinced that Hayden is worth the effort. And then some.

During their presentation they gave examples, and they recalled certain instances which were funny, and events which were surprising, and situations which were difficult. And other staff around the room who know Hayden would chime in and they'd laugh with them, or nod to their point... and it was as if we had this imaginary pedestal in the center of the room and Hayden was on top of it, with that beaming smile of his.

All of these people there to discuss how to support him was absolutely surreal. Here we are in New Jersey, in the middle of an education system trying to survive from an unprecedented economic climate, with funding slashed, the number of staffed reduced, programs affected across the board... etc, etc... and I had this incredible opportunity to say okay, I am going to do what I can with what resources and people we have available to work with.

When I was younger I imagined I would get married one day and have a family. I also imagined I would go back to work because for me, it felt right to maintain a sense of accomplishment outside of the home. It will warm any parent's heart to interact with their child, and it's indescribably fulfilling... but it also feels normal to interact with other adults, and I enjoy being able to contribute to our household while doing so. I was going to find my own appropriate work/family balance. It may not be suitable for the next mom, but it felt right for me.

So readjusting to our unexpected parenting experience, and readjusting this work/family balance, and readjusting my idea of the future... I am constantly experiencing a fluctuation between mourning our former expectations, and accepting this life that we have now.

I know that all of our challenges and difficult times will not just suddenly, permanently dissipate. There is no magic wand.

However... as I entered that library yesterday afternoon, it was as if I was walking through a new phase entirely. For the first time in a long time, I felt an unparalleled sense of accomplishment in myself and more importantly pride in our son, and most importantly hope for the future.

Wednesday, September 5, 2012

first grade

Every day there are proud parents sharing pictures via social media. Most recently, they're somewhat nervous parents sharing an image of their child about to begin the new school year.

Tomorrow I will likely be another proud, nervous parent sharing a picture of mine.

But first things first. I am going to my son's school today, during a teacher-in-service day, to speak with about twenty or so members of the staff about fragile x syndrome and Hayden (which I am nauseously-nervous over).

His speech therapist of the past four years has created an entire PowerPoint presentation, and I will distribute a new Student Profile I created for Hayden as well as fragile x resource sheets. 


During the anticipated two-hour presentation, the speech therapist along with Hayden's former teacher will do most of the talking. I will contribute for about 15-20 minutes during a question & answer session.

Needless-to-say, our first grader is not the same as other parent's first graders. Yes he is moving on from kindergarten the same as the other kids, but he is nearly a year older than most of them as we knew he would benefit from an extra year of preschool.

The parents of the other first graders are not coming to the school for a workshop about their son's disorder. They're not thinking about when they will speak to the class on a similar level, to make sure the curiosities of their child's peers are addressed. For most of these parents, their child's needs may include having their lunch cut up for them, or help with tying their shoes, or assistance in making sure some of their letters are not written backwards.

Their children will not arrive to school via a smaller vehicle from the district's transportation company. Their children will not carry a parent-teacher communication journal in their backpack. Their children will not be leaving class for therapies. Their children will not need extra clothing stashed in the classroom to prepare for toileting accidents.

So this sort of sucks if you look at it that way, doesn't it?
But parents such as those of us with children with truly special needs, have had to rework our way of thinking. This will never end.

Am I annoyed that it's one day before school begins and we're still ironing out transportation? Am I concerned that it's one day before school begins and we're still pending schedule details to prepare our son for the first day? Am I frustrated that the teacher of the classroom he was placed in is going to change mid-year due to maternity leave? Am I angry that we only learned of the upcoming change in routine with his afternoon Aide because his former teacher told us? Am I exhausted from having my radar up to all of these new details and inconsistencies? Yes, yes, yes, yes... and yes.

As Hayden's parents, no two people know better than us just how difficult a bad day can be (it brings a whole new meaning to the word "challenging"). Therefore I do not envy the job of the teachers. But likewise, we also know just how off-the-charts rewarding a good day will be. I do want all of the teachers to have the opportunity to witness those days.

So you see if our son was the same as other parent's first graders, he would not have a special ed instructor teaching him academics in a setting that is appropriate for his individual learning style. He would not have an occupational therapist who works with him to enhance his self-help skills, or a physical therapist who taught him how to pedal a tricycle. Nor would he have a one-on-one Aide who remains tireless in her efforts to keep him on track, on task, and focused. Even if it means sitting close enough for him to recognize a piece of mint gum in her mouth, which she figured out the scent of calms him.
He would not have a former teacher who, out of the kindness and generosity of her own heart, is opting to remain involved in his education plan. (He would not have an Individualized Education Plan.) He would not have a speech therapist who put together a presentation to share alongside said former teacher, so together they can educate other staff members on how to help our Hayden.

In short, he would not have a team of people looking out for his best interest on a daily basis... some of whom, this is their primary responsibility.

Our first grader is not the same as other parent's first graders. Instead of expecting him to write his first and last name correctly, we will be proud of him for drawing his "H". Instead of expecting him to read a new book, we will be proud of him for visually identifying more and more new names and other words. Instead of expecting him to make progress with complex math assignments, we will be proud of his improved counting skills. Instead of expecting him to paint a masterpiece in art class, I will be proud of him when he completes a craft.   

I will never need an honor roll bumper sticker on my truck for anyone to know just how much I believe in my son.

He is our first grader. And our expectations are that we will have another school year of being proud of him.

Saturday, September 1, 2012

how one really good author can make a difference

This past Thursday our local weekly paper, The Township Journal, printed a special back-to-school insert. There is an article, 'How one really good teacher can make a difference', and we were thrilled to notice they included our honorable mention to Hayden's former teacher. Here it is in the third paragraph:

Well, we are thankful for the inclusion but some of you may also realize why we believe this deserves a reply.

Here is my email:

"Dear Sally,

I wanted to thank you for including our nod to Hayden's preschool and kindergarten teacher, Mrs. LaBouseur. What a wonderful surprise to see our feedback in the article 'How one really good teacher can make a difference'. I barely recalled submitting a few sentences in response to the ad that ran for a few weeks, to share if there was a teacher who had such a wonderful impact on your life. Out of context I had no idea what the responses might be used for, if anything, and without the online submission form really providing any additional information I sort of forgot about it. I am truly glad you encouraged readers to share the impact their teachers have had, and we are excited for Mrs. L to see it.

The article in itself is wonderful, and I think good teachers deserve recognition on an ongoing basis. When I submitted my Fragile X Awareness Day article last month (published under Viewpoints), I may not have mentioned but we never heard of the Andover Regional School district. We moved out here in 2005 due to our particular childcare arrangements, in anticipation of my return to work following my maternity leave. Well, before it was even time for Hayden to begin school we learned he has special needs.

From the very first moment we became familiar with Florence M. Burd School back in 2008, we were welcomed by a helpful, knowledgeable Child Study Team, a Principal who listens, very encouraging therapists, trustworthy aides, an unparalleled preschool teacher, and a kind, friendly bus driver. This school was undoubtedly an environment where our son Hayden would thrive. Even four years later, I can still accurately say the same thing about the people who work directly with him. His teachers, therapists and aides have remained so in-tune to Hayden's needs and are constantly evolving their techniques to match his progress and encourage his success. School is a place where our kids grow up, and it makes all the difference in the world when they are surrounded by people who believe in them.

I hope this puts in perspective just how meaningful it is for us, and how grateful we are, to have a public opportunity to give recognition to a teacher like Mrs. LaBouseur (such as on page 16, of the August 30th Township Journal).

That being said, I must clarify something.

Referring to how this is printed in the third paragraph, "Hayden's mother appreciates that Mrs. L... recognized the potential in her disabled son..." is not an accurate assessment. He is not our disabled son, he is our son... who happens to have Fragile X Syndrome. He is a person first. Disabled is not an accurate adjective to describe any human being, but may be more appropriate to give a description of a stranded car on the side of the road.

We use People First Language because we put the person before the disability. (I would encourage you and anyone else to please look up People First Language via any search engine, and learn a better perspective.) There is no such thing as a Down's child, or an autistic child, or a disabled child-- they may be a child with Down Syndrome or they may be a child with autism, but they are a child first.

Our language not only impacts the way we see a person, but it will impact the way they see themselves.

Hayden is not only a very social, charismatic, likable, lovable, funny, motivated, smart, and physically healthy child... he is arguably one of the happiest kids a person could meet. He is able to learn, and to play, and to interact with others and he easily finds his way into the hearts of nearly everyone he comes in contact with. He is not our disabled son. He is our son who is able to love life and it shows in everything he does.

Thank you for taking the time to read our feedback and once again, overall we do appreciate the inclusion. But as a mom, a caregiver, and an advocate I will always continue to demonstrate the utmost respect for my son. We hope moving forward, you maintain a similar perspective.

The Capela Family"

Monday, August 6, 2012


We were less than five miles from camp this morning, when traffic slowed to a complete halt.

I thought we were lucky that it stopped before we actually passed the last opportunity to turn. I hesitated for two seconds because I was not completely confident that I knew how to get to the camp from the other direction. But one more glance at the never ending line of brake lights and I made a hard right to get the hell off of that road.

At first Hayden was asking questions but didn't seem bothered by the change in route. Then I made a wrong turn, and another, so by the second wrong turn he was clearly frustrated & screaming at me to go down the road we just turned off of.

He also listened as I tried calling my husband twice before the two wrong turns, and I wasn't able to get him on the phone, so that may have contributed to Hayden's anxiousness.

We finally passed a landmark which confirmed we were definitely on the correct road. The detour probably took us about ten minutes out of the way, but I am not convinced we would have made it to camp any sooner if we sat in that caravan of cars. From an anxiety standpoint, that would have been intolerable for Hayden, anyway.

He was a little bit "off" still when we got to camp, but luckily some buses pulled up and that distracted him long enough for me to leave.

When I picked him up from camp, they said he had a great afternoon but it was a difficult start to the day. He ended up missing morning swim which is one of his favorite activities, but their repeated efforts to get him changed and in the water fell flat. Today happened to be camp t-shirt day, so I was wondering if that threw him off-- because typically he would arrive at camp in his swim gear but today was different because he wore his camp T. Who knows.

Shortly after we got home, it was time for the behaviorist to arrive. Today she had the lovely occupational privilege of witnessing the motherload of all meltdowns.

I am trying to remember what the antecedents were, and I know it included (1) trying to correct his insanely loud hammering because we could not hear each other speak and (2) trying to encourage him to sit and eat his snack instead of bouncing around the living room with crackers falling everywhere.

Following non-compliance with both, that is what prompted me to turn the television off. His yelling then turned into a physical disaster of sorts. Switch on.

I know his armchair was overturned, his snack table was pulled away from the wall and all four chairs thrown about, the contents of his kitchen and his toolbox were scattered far and wide, the couch cushions were of course on the floor, his grill set was disassembled, and there was a mine field of wooden blocks and cars.

He just kept unleashing his wrath until everything was everywhere.

Finally he worked his way back over to the couch, where I attempted to keep him confined to the corner between both sides of the sectional.

I was getting kicked, slapped, scratched, shoved, whacked, teethed, spit on... and screamed at. The behaviorist was in the doorway on the other side of the room, and at one point I heard her say, "You're doing great, Mom."

I was only thankful that my back was to her because after several minutes I could no longer coach myself out of being upset.

Suddenly Hayden stopped. Apparently a neighbor had powered up their leaf blower, and with that Hayden sat up on his knees to look out the front window. Switch off.

I spent the next five or so minutes crawling around the living room to put it somewhat back together again. Eventually the behaviorist was able to prompt him to clean up one thing, and he put the blocks back in the their blue bin. Even after the ten minutes it took me to turn the damn television back on between our two broken remote controls, I finally got his show going again and he was essentially fine. He sat at his snack table and ate his crackers.

For the second time today, traffic slowed to a complete halt.

Monday, July 30, 2012

lucky thirteen

November 28, 2006 was an unassuming Tuesday evening. Hayden was asleep, Dan was at work (he was on night shift at the time), and I was preparing myself a late dinner.

You may or may not have already heard this story, but that was the night the pediatric neurologist called to say that Dan and I would need to come in and speak with him (the very next day) about Hayden's test results. I immediately threw back at him, "your staff already told me the results came back when I called last week, and that everything you tested for was negative."

After he and I had a bit of a back and forth, during which time he never even apologized for the colossal miscommunication, he finally said, "Well, the important thing is that now we have an answer and we can talk about it tomorrow." Or something to that effect.

When I tell you it was like pulling fangs to get the name of whatever Hayden tested positive for, out of him, I am not even doing it justice. I almost got in an argument with the man-- I did not care if he was a medical professional, because he had our life-altering results in his hands.

So he finally said it. I did not know what he was talking about... this fragile x?

"Is he going to be OK?" I demanded. 

The answer he gave me: "There is no increase in hospitalization with people with fragile x." Then he proceeded to tell me that the primary difficulties are behavioral challenges and decision making.

OK... because to me, that sounds like nearly every child I have ever met in my entire life.

Then of course I did exactly what he told me not to, and went to the computer to look up this X thing.

Immediately, you will see one primary consistency with all search results: inherited intellectual disability.

This is not only how I learned it's a genetic disorder, as if that's not heartbreaking enough, but it was also confirmation that my son has something... not just developmental delays.

Our first exposure to the community of people affected by fragile x syndrome-- and the fact that there even was a community-- was via an extremely generous personal invite from The Clark Family to a FRAXA X Ball at New York City's Gotham Hall. On a rainy, cold, nasty evening we got all dressed up and schlepped into the city. We entered this overwhelming venue with ceilings so massive, one would look like they were watching an air show to take it all in. Dan & I sat quietly at our assigned table, and held hands underneath the draping tablecloth.

I do not remember what the presenters spoke about. I do not remember what items were up for silent auction. I do not remember how many people were at our table or who they were.

But one thing I do remember, is something that a mom sitting to our left told us. She said that prior to her son learning sign language, he would bang his head against the wall when he was hungry.

Hayden was about a year and half or so when we attended this X Ball. He was crawling, but not yet walking. He could communicate with a few signs, but was not yet talking. Her words terrified me that our own son's frustration level could increase one day, and the thought of him possibly hurting himself was too much for me to even think about.

My next exposure to the fragile x community was at the 11th International Fragile X Conference in St. Louis. I was there with my mom and spoke to no one, except my husband and my sister via panicked phone calls over what I was learning at said conference. All I remember about that conference is anxiety. Well that, and some t-shirt kiosk right in the mall attached to the hotel, where there was a shirt displayed that I actually asked to have removed.

It said, "I am we Todd did. I am sofa king we Todd did."

The first time I saw that "joke" was at a bar. Someone wrote it down on a napkin and told me to read it out loud. This was before I had Hayden, before I was married, and before I was even engaged. I was young, unaware, and I am beyond ashamed to admit... I think I even laughed.

Well, in St. Louis when I saw that stupid, pathetic t-shirt I felt overprotective and angry. I marched right up to this young man who was clearly clueless, and proceeded to explain what type of conference was currently in progress. And more importantly, who the people were who would see that t-shirt displayed. He did not hesitate and promptly removed it.

Since then I have joined Advocacy Day twice in Washington, Dan once, and we've also attended various other local day-conferences within driving distance. However I have had zero intention of going to another international conference. I knew when the 12th one in Detroit was held two years ago, I wanted to stay as far away from there as possible.

Over the years I have written some articles, began blogging, and we have participated in fundraising (by the way, Hayden's First Giving page for the NFXF's '$25 for 25 Years' raised the most money among all who participated in the campaign). Hayden has also been seen by many of the fragile x "celebrity" specialists-- from southern Jersey, up to Staten Island, and out to California.

But Dan and I had not yet attended an International Fragile X Conference together. We have never both been away from Hayden, at the same time, for more than one night.

Two days ago we returned from the National Fragile X Foundation's 13th International Fragile X Conference.

It was so exciting to even be able to point people out to Dan, to tell him, "they're the ones from Massachusetts who have a son a year older than H & he is so similar from the stories I read; and she's the one from Illinois with two kids, and her son is the one with that cool bike we considered for H; and that mom is the one with three kids who likes hip hop just like me; and that's the mom from Colorado who sent us the therapy swings; and she's the one who lives in PA who initially set up that TV interview," and, well... I could go on and on :-)

Thanks to the world of social media the facebook term "friend" has turned many, into just that

(Btw, before we even boarded the plane home, Dan joined)

I don't just feel like we attended this conference... I feel like we participated in it.

Between a photographer from the Foundation who paid me an unexpected, incredible compliment for something very brief I said (off-the-cuff) during a video from Advocacy Day; and another mom who approached me as she told her mom I was the one whose son met Buddy from Cake Boss; and a new friend who quoted me during a conference session she headed with two other amazing moms; and the larger-than-life-size poster of us on display next to the table for Our Fragile X World
(visit to learn more); and when Robert Miller himself took a picture of Dan & I in front of said poster; and being brave enough to complete unscripted/ unrehearsed parent interviews for an upcoming video; and actually contributing during the mother's lunch workshop; and showing off the very special, personalized FX jewelry handmade for me by Aloha Mom Creations... and anything else which was the complete opposite of me being a hermit crab.

I loved our conversations with 'heavy hitters' such as Dr. Hagerman, Louise Gane, Tracy Stackhouse, Sarah Scharfenaker, Ted Brown, Vicki Sudhalter, Katie Clapp, Linda Sorensen, plus an Editor from the Quarterly who encouraged me to write more... and last but not least, the opportunity to speak with a mom of a boy with fragile x from Europe who I remembered from the St. Louis conference.

Then there was the 'Mission to Lars' screening, so beyond incredible, that it officially bumped my previously all-time favorite movie 'Life is Beautiful' to second place... (

And the Marlins game when 13 year old Glenn Sheldon, who has fragile x, won the opportunity to throw first pitch... and did so, amazingly...

Plus a ton of other memorable moments in between... too many to list. Although the automatic window shades in the hotel room and gorgeous harbor view, deserve honorable mention as well. 

I am sad that we had to depart early on Saturday, but I definitely needed the day yesterday to prepare Hayden for a new camp program which began today (different post to come). The only way was to leave when we did, and have the one day in between.

One year ago, for example, if the Fragile X Association of New Jersey had announced a get-together for families, I would have respectfully declined without even thinking twice. However, I am grateful there is an upcoming event in August during which we will have the opportunity to reconnect with some of these positively inspiring, amazing people.

Me and Dan are so blessed and fortunate to have such supportive families from both sides... and we can now say we have a third family of support among the entire fragile x community as well.
I wonder if most of them even realize just how much they strengthen this mom every single day.

Well, they will now.

Saturday, July 14, 2012

i scream, you scream, we all scream, for ...

Yes, anyone who really knows Hayden knows this entry can't possibly be about him. And you are correct :)

However, my favorite parental FX post of the day, from a Colorado mom (names removed for privacy):

"One really busy Saturday our NONVERBAL son got 4 different people to take him for ice cream by signing 'ice cream'. He might've been been saying that he liked ice cream, but we all separately assumed he was asking for ice cream and took him to Cold Stone. Only later did we realize that [my husband], one of our daughters, a care provider and I had all taken him on the same day."


Hypothetically speaking, this is definitely something Hayden would do to get his hands on more Dunkin' Donuts

Friday, July 13, 2012

this one's for you, c.s.

There are fb 'rooms' (a.k.a. pages) for people in the FX community. they are closed groups visible by invite only, for our own privacy. But without using any names... there is a beautiful, beautiful post I feel compelled to share...

A mom of 22 year old son with FX, posted about their new neighbors who have two 8-year-old girls. Her son helped them get their scooter back from their older brother who was... you know, being an older brother. So later on the two girls thanked her son & asked the mom why he sometimes flaps his hands when he gets excited, & acts differently. The mom told them he has fragile x. So one of the girls said, "What's that? Something that makes him be nice & help people?"

I cried when I read that.

Monday, July 9, 2012

a gene mutation may be a good thing

On Friday, July 6, ABC aired an episode of 20/20 about Heaven.

Barbara Walters spoke about what people believe it is, what people believe it looks like, and what are the perspectives of those we may tend to listen to?

She speaks with everyone from the Dalai Lama, to scientists, to people who have flat-lined and been brought back, and many other people in between. She also discusses the findings of many doctors and scientists, and what they believe.

During an interview with a former geneticist for the National Institute of Health, the doctor explained how they conducted a study to learn whether or not spirituality is something we are possibly genetically predisposed to. 

They asked study participants questions such as, "Do you feel some connection to other parts of the universe?"
And, "Do you believe in miracles?"

They found that everybody has some level of spirituality, but some people are simply higher on that scale. So Barbara Walters dug a little further, to explore how spirituality might actually be a personality trait encoded in our genes.

The geneticist tested the DNA from study participants, and those who scored highest had a mutation of at least one gene that seemed to affect their level of spirituality.

In his words, "This particular gene controls certain chemicals in the brain, and those chemicals affect how consciousness works. They affect the way that our feelings react to events around us."

Barbara Walters also spoke with a scientist from the Thomas Jefferson University, who studied people while they were deep in prayer. By referring to brain imaging, this man was able to prove that people can go to a place with less of a sense of space and time, and more of a nirvana.

The scientist formerly from NIH also added, "Nature has given us the capacity to be spiritual otherwise the gene would not have survived evolution. It also tells us that spirituality may be simpler, or more difficult, for some people."
He said it’s a ‘belief-that-there’s-something-else-out-there’ gene.

Barbara Walters concluded, whether or not you believe in a G-d or a heaven we still need spirituality to make our experiences complete.

I know this was not a discussion about the FMR1 gene. But I also know that, technically, it could be...

If a gene mutation can be a good thing, then I'll take it. The idea makes more sense to me to consider the likelihood that a difference can be a strength, vs a weakness. 

And I am happier at the mere thought, that just maybe, me and my son are genetically predisposed to be more spiritual than I give us credit for... more reason to be at peace than I've allowed myself to realize... and more reason to hope there is something else out there in his future. 

Wednesday, June 27, 2012

the daily grind

Sometimes when I am making Hayden something to eat, I just don't seem to prepare it fast enough. I can be proactive and begin putting whatever it is together maybe a half hour before I think he'll ask for it. But when he stands too close to the stove, or too close to a knife, or some place that is inadvertently stalling me, I wish I could wave a magic wand and make some sort of baby gate appear around myself for a few minutes.

I think other Moms would say that is just part of being a mom. Moms are everything (or should I say everyone) from short-order cooks, chauffeurs, and personal assistants, to nurses, maids, and personal shoppers. I am all of those people too, although the maid part depends on the day. 

From the time that Hayden was in Early Intervention (EI) and we educated ourselves, and made phone calls, and fought to increase his measly five hours of therapy a week to NINETEEN... and fast-forward to starting school when there were budget cuts and staff changes... I had to become our own professional Advocate.

When it was time to coordinate schedules for the 9 EI therapists covering 5 different therapy areas, I had to become an expert Planner. 

In the years to follow, as I carefully orchestrated every single week of Hayden-coverage between me, my husband, our jobs, babysitters, grandparents, daycare, and school... I would put any A-list celebrity Assistant to shame.

By now I could act the part of a Physical Therapist, Speech Therapist, Occupational Therapist, or Special Educator. I could write a thesis on ADHD, hypotonia, apraxia, and exotropia (although I wouldn't want to). I'm pretty sure I hold a degree in behavioral issues, and I most definitely have my Masters in sensory processing disorder.

That is not even counting the amount of appointments, consults, observations, and paperwork that comes with the territory. Forms, evaluations, surveys, questionnaires, more forms, medical history, pregnancy details, outline of milestones, more forms, examples of his reaction in scenarios A, B, and C... or his understanding of D through F... will he eat foods G through M...

Yes, there exists an insane amount of paperwork with personal data on my son. And he's only been in this world for seven years.

But sure, you can call me a mom. After all when it comes down to it, I am simply the parent and caregiver of my own offspring.

Sunday, June 24, 2012


This is a before and after of H's haircut :)

I've missed recording a bunch of updates because things seem to be happening very close together lately.

Last week I tried giving him his medicine one day. I tried twice and it failed twice.

The medicine is in the form of a patch, which was our final solution since the other medicine was not available in an extended-release in the liquid form. The reality of getting a capsule in him is non-existent. Everyone, including doctors that we spoke with, said we should just empty the capsule into yogurt or juice or something. Sounds simple?

1. Hayden will not eat yogurt-- not really. Certainly not to the point that he would get an entire dose of medicine in. He might taste it but that would be the most to expect. Same goes for any similar substance. Heck, I could put a tub of creamy whipped topping in front of him & he would not care less about how much sugar & yumminess is in there. He would not touch it because of the texture.

2. In theory, we could try applesauce because he likes it. But he will never eat (or drink) anything on command. He would never taste something if you told him to try it, or if you said it's delicious, or if you said, "take a bite of this & it will turn you into a car."
3. Speaking of drinks... H is a no-juice kind of guy. Or milk for that matter. (Tried sneaking an antibiotic in his milk when he was 3, out of desperation, and that was the last time he ever trusted "milk" from his parents.) We could even flavor it with all the chocolate or strawberry syrup in an entire bottle & he still wouldn't be interested. He likes what he likes, and what he likes is water. Just water. 

So, we got the patch. And I applied it right between his shoulder blades since that's the only place I could think of that he shouldn't be able to reach it. Thought wrong. I guess I conveniently forgot that another side effect of fragile x is hypotonia.

But I humored myself and tried again, and it failed again. At least the first time he managed to peel it off, he told me he was throwing it out. The second time, he was much more sly about it and I found the patch crumpled up on the floor. Having no idea how long it had been there, of course.

In other news, the big guy is now 7 years BIG!
I was taking video of him riding around the yard in his new battery-powered dune rider (I think it's called).
In the first video I was coming around the corner with the camera and he was so proud, and he yelled, "Hi Mommy!"
It's about 30 seconds and I must have watched it 20 times already. I waited so SO many years to hear him say my name that it still sounds new and it still sounds miraculous.

In the second video, in a matter of about 20 seconds he does three pretty amazing things... First he says, "Go Hayden!" because he is so proud of his driving, as he should be :)
Then, he continues to cruise across the yard with one hand by his ear pretending like he's talking on the phone (which we corrected him from doing and he thought it was funny).
And last, he comes to a stop and he actually cheers for himself and claps.

It is one thing to witness a child develop and progress, and you have so much pride built up in their achievements. I would expect that... you are the caregiver and you remember every step of the way.
But when a kid recognizes their own success and you can literally see how proud they are-- of themselves-- it is just absolutely beautiful to see that kind of self worth.

That means more to me than anything at which Hayden differs from a typical peer, because I don't even know how I would begin to teach him that if he didn't feel that way on his own.

Wednesday, June 6, 2012

june, so far

Believe it or not, we are still in the process of figuring out his medication. The specific brand that was recommended to us, is not available in the liquid form in the extended release. Although the capsule can be opened & mixed in with something, there is nothing that Hayden will ever eat or drink on command. (Unless possibly we could conjure up some medicated munchkins.)

The pediatrician has now suggested a different medicine with the same, or similar, active ingredient. It is available in patch form so I am hoping with all hope that this works.
To Be Continued...

In other news, Hayden had his camp visit over the weekend. I am not sure he fully understands that he will be spending his day there, and the fact that it's not until near the end of the summer could be confusing. However we wanted to begin introducing him to the place, and wanted to make sure that his babysitter/ soon-to-be shadow counselor was there as well. So at least he would associate that with a place where she is and have that familiar face. She actually missed part of her prom weekend because she was there for training that day. I feel as bad as I do grateful.

We return for camper orientation at the end of the month. It's going to be busy with a lot of campers and siblings and parents, and the director even went so far as to use the word "chaotic". But we do want him to see the camp with kids having fun there.

In the meantime, in other news, the behaviorist came for a consult yesterday evening with his K teacher. As part of Hayden's summer program, we will have two visits a week for a behavioral consultation to help with such skills as carrying over toileting success at home. They visited for an hour and a half and we had the opportunity to discuss all of the challenges as of late, and see how we might be able to help Hayden focus, and make decisions, and so forth. In general, any technique to sort of counteract the disorganization.

And of course he complied with sitting on the toilet TWICE while they were here, with one success.

I can do nothing but shake my head.