a holiday letter to H's Principal

Today was the day that most children in most school districts returned to their classrooms. For the majority of students, this is the day that school resumed post- Winter Break. For students from Sandy Hook, tomorrow marks the day that classes resume in a different school, post-tragedy.

Just prior to Winter Break, I was gathering the very large number of gifts for various people who work with Hayden & signing a seemingly endless number of holiday cards. I am always afraid I am going to forget someone, so I start from the beginning of his day & attempt to think of everyone we want to say 'thank you' to. There's the van driver, his Aide, the Aide who is with him when his regular Aide is on lunch break, his special ed teacher, his regular ed teacher, his therapists... the list goes on. In my mind I sort of think about the layout of the school, & go hallway-by-hallway to make sure I am not forgetting anyone. I even asked one of the teachers to help me with a list. It really does take a village!

Hayden is only in 1st grade but this marks his FIFTH year at that school, including summer program. For three years he attended the (awfully named, yet awesome) Preschool Disabilities Program which has since been moved to a different school-- but he attended the program from age 3 through 5. At age 6 he was in Kindergarten, & now at age 7 he is in 1st grade. This is the same length of time that most typical children have entered the school & graduated to the next one.

So anyway when I got down the list to the Principal (or should I say the top of the list?), I decided I really just want to thank him. I thought about bringing in a really nice plant, or sending one of those edible fruit arrangements to the front office... but with the tragedy in Connecticut still being so raw, & for most of us our emotions as well, sending a physical gift didn't seem to suffice.

Therefore I sat down to thank him. Once I began writing I was only interrupted by my eyes welling up, but otherwise I plowed through this holiday letter to H's Principal like something that felt truly five years overdue:

"Good Afternoon Mr. M,

Happiest Holidays to you and your family, and we hope this message finds you
well. Dan and I just wanted to take this opportunity to express our
gratitude for your continued support. I know we stopped in for a moment
during an evening of parent-teacher conferences, but I wanted to communicate
our sentiments in writing as well. And again as far as that incredible
faculty workshop back in September to introduce anyone who had not yet
worked directly with Hayden, to fragile x, and the opportunity I had the
following month to go in and speak with the first grade class... these are
the types of efforts which will allow a mutual benefit for Hayden, his
current and future educators, and his peers. This is precisely the precedent
we want to set, and here at Grade One we have provided that necessary
platform of open communication.

We appreciate your willingness to listen over the years and working with us
to address concerns when need be, as well as accepting our overall
participation in Hayden's education. As you know we continue to maintain
involvement within the fragile x community as well, and every year our
journey is about moving towards the best possible treatments for Hayden--
whether one year involves a school visit from a specialist, or another year
a cross-country trip to a clinic, or a week at an international conference,
or advocating on Capitol Hill, and even within the very school district. We
make every effort to keep everyone informed and ensure the school has the
latest reports, the most up-to-date evaluations, and so forth.

But it takes more than determined, dedicated parents to refine what is best
for a child. Their education requires many minds coming together-- not just
two minds-- to explore and discuss options. The staff within FMB 
have always been extremely receptive. My favorite part is when we have
a visit with one of these doctors-- whether they only specialize in fragile
x or not-- and they are not just pleasantly surprised but nearly floored
over the education plan in place for Hayden. These are among our proud
opportunities to sit up straight... and brag. We've heard comments such as
the people at FMB renewing one's faith in education, we've had specialists
ask us if Hayden is in private school, and most recently a developmentalist
we took him to actually applauded the behavioral plan... I mean she
literally clapped for a few seconds and said, "you have no idea how many
districts fail to see the importance of this." Well, not ours, I thought.

In the extremely difficult wake of this unthinkable tragedy in Connecticut,
our eyes were all forced wide open to the crucial importance of ongoing
safety measures... around the nation, and certainly within our own tri-state
area. For me it felt even more eerily close to home when I learned my
supervisor's youngest niece is a survivor. She is about the same age as
Hayden, and is a first grade student at Sandy Hook. Her niece was two
classrooms over from the room the shooter was in, when he took his own life.
She walked with her eyes closed as her teacher led the class out of the
school, but would later learn she lost nine friends that day.

The first glimpse I saw of this tragedy was on the news as I stopped home,
just before heading to FMB for Hayden's team meeting that Friday. The town
name "Newtown" flashed across the screen and at first glance I didn't see
that second "w"... even if I had, I certainly didn't realize it was in
Connecticut. It's difficult to attempt to put into words the conflict of
emotions between the sheer horror of the incident, and the undeniable
(albeit guilty) relief that it's not your own child's school.

It's not uncommon for a parent of a child with special needs to have
different worries than other parents, and more long-term safety concerns. We
have heard some horror stories over the years involving non-verbal students,
or so-called professionals trusted with children whom they shouldn't have
been anywhere near. We hear about these stories in the media and an
occasional shred of comfort may emerge, when there are new laws in place as
a result.

None of us can put a guarantee on everyone's safety and happiness all of the
time. But for the overwhelming majority, thanks to you and your incredible
staff Dan and I rest assured that our little determined warrior is already
in the hands of heroes.

We wish you a blessed holiday, and we thank you.
The Capela Family"

He did send me a very brief but kind reply, pointing out that they don't always hear the positives... so it was that much more appreciated.

Well I can empathize, Mr. M-- because your staff truly warms my heart on a regular basis & that is precisely why I wanted to tell you this.
*Happy New Year, Everyone*

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.

-

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.

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 27^th 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 27^th happens to be only three days removed from my 27^th birthday (or 37^th, 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 (nfxf.org) and the FRAXA Research Foundation (fraxa.org) 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 27^th  together we will witness the first ever nationwide Giving Tuesday. I hope you participate by visiting nfxf.org and/or fraxa.org ... because your dollar will help turn that hope on the horizon into a reality.

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...
 

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.

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?