Clouds, May 2010

Clouds, May 2010

Thursday, May 30, 2013


5k can mean a lot of things.



Door Number.

5 kilos of gold? (That would be a heck of a lot more than $5k.)

I feel funny asking people for money. First of all, many of our friends, family, & loved ones already donate so generously throughout the year. Each time we receive a contribution notice to either the NFXF or FRAXA, in Hayden's honor of course, it is indescribably heart warming.

Not to mention all the people who write letters in support of the annual Advocacy Day every March, or those who sign petitions to save a clinical trial (& btw, if we don't reach 10,000 signatures by June 20th I believe the page automatically expires, so if you haven't shared the link yet...), or especially those few who encourage others to support the FX community, even if they never personally met Hayden. For example, my mother's colleagues who are hosting an upcoming retirement dinner specifically in her honor & have encouraged donations in lieu of gifts.

(Many of them will finally meet our family's celebrity for the first time, at said dinner.) 

So, what do I mean by 5k?

Well, The National Fragile X Foundation is hosting a virtual event for FX Awareness month in July. I am taking part in the "Let 'Em Know 5k" & you can support our team...

All funds will be matched up to $25,000.00

So please consider helping the Virtual Walk/Run participants reach that $25k goal & turn it into $50k...

Just click here. (same link as "our team" above)

It would be near impossible for me to put into words how much your continued support means to us.

And to this kid right here:

(click on the picture & it will open in a larger view)

Thank you. Thank you. Thank you.


Friday, May 24, 2013

my hands are knot tied

Exactly a week ago from today, I posted one of my blog updates including my most recent communication to the superintendent. I wrote a very detailed advocacy letter in favor of H's Special Ed teacher (she is the one who helps him learn the core academics at HIS pace, & then he's mainstream Gen Ed for everything else). She is intended to be a consistent part of his curriculum every year, when other teachers will change as he progresses from grade-to-grade.

Because she is newer than other staff, & non-tenured, her job is in jeopardy. The superintendent, although she was receptive to my feedback, tried to assure me that anyone who took Miss B's place would absolutely be qualified & blah blah blah... & I was trying to tell her, to show her, that it's not just Miss B's certifications which make her an appropriate, effective teacher for my son & the other kids in that class. She does that all on her own.

H's former teacher (who taught him even before the current program was introduced at his school), was BCC'd on my letter. Not just because I mention her in my letter, so therefore I thought she should be copied on it, but for about 5 years now she has been my rock since Hayden was in preschool.

You see, whether you're a first-time parent or a new parent to a child, if you learn that your child has special needs there is much less time to absorb this news than you would think. You're busy with all of the various doctor & specialist appointments... busy with therapies... & as you're living through all of this & helping your child through each early developmental stage, you're simultaneously making preparations for the next one... & it's exhausting. But if you're lucky you have very strong family support & they literally help hold you up. And needless to say if your child's smile is anything like the one on my kid's face, his happiness certainly keeps you going, too.

But then before you know it, your child who was just a toddler ten seconds ago is now age-eligible for grade school... & you're once again faced with a transition. And you thought you had this whole parenting thing down, & then you realize this stage requires that you actually put trust in others.

And there is so much you do not yet know.

And challenges will arise... and laws won't make sense... and the advocating is endless... and you're scared you can't do this nearly as well as you need to... and if I could tell you what all of this felt like from my perspective, I would sum it up by saying and then there was Mrs. L.

She knew I could do this before I did.

And I honestly think it's because of her that I can easily distinguish between most teachers & then teachers like Miss B.

So when it's repeatedly explained to me that everyone's hands are tied & the law is the law, & the budget cuts are what they are, & Miss B is among the newest of the staff, & she is not tenured... I think it went in one ear & out the other, because all I heard was that her job was in jeopardy. 

If the past five years have taught me one thing, it's that just when you think your efforts will be useless that's precisely when you should be motivated to put them forth. These are often the times when people do not expect you to speak up, so it's all the more reason why you should.

So I wrote my letter
& I said everything I could think of... six pages worth. I didn't care if it made someone's eyes roll or if they skimmed it & then went on to the next thing, without even thinking about it for one second. It had to be said because it's for Hayden.

The Superintendent did offer a polite, albeit brief, reply: "I wanted to let you know that I received this and I really appreciate you taking the time to do it.  I promise to share the information as well."

Days later when Mrs. L was still thinking about this (apparently I'm not the only one... <3 her), she called & said that she thought I should forward the letter to the Board of Ed. I told her two things: that I was informed I should direct my efforts to the Superintendent, & that she was going to share the letter with the Board.

She basically concurred that is correct, but this can't hurt. The next day I forwarded my letter to a couple members of the Board. (I offered an apology in advance in case it was a duplicate... blah blah blah)

Turns out, it wasn't a duplicate. That evening, one of the Board members wrote me back:

"Thank you so much for your heartfelt letter. Please know that we, as Board members, agonize over these types of decisions. I can promise you that I will contemplate all of the information you shared with me about Hayden. Do I have your permission to share your email with the rest of the Board?"

Needless to say I replied with an insanely eager yes. Because even if
everyone's hands are tied & the law is the law, & the budget cuts are what they are, & Miss B is among the newest of the staff, & she is not tenured... the truth is I've always had a knack for untangling things.

I am a visual learner... I can follow lines well... this is how I am able to draw & able to paint... & incidentally having that kind of eye is also very useful for loosening knots.


Monday, May 20, 2013

sign here.

This might be the shortest blog post in the history of my blogging.

The one FX clinical trial which was closer than all the others to actually reaching FDA approval, was prematurely stopped due to lack of funding.

100,000 signatures are needed to get the President's attention.

Please help the families trying to save the STX209/Arbaclofen extension by signing and sharing the online petition.
sign here.

I did. You can find me at signature #29:

Your turn.

Please sign and pass it on.


Friday, May 17, 2013

the right to an appropriate education

Although Hayden is part of a Gen Ed class each year, he fulfills his academics in a Special Ed setting. His Gen Ed teacher changes from year to year, but the teacher he works with for reading, writing, math & so forth, remains the same. She is a crucial, consistent part of his school day.

Just this week, we learned due to budget cuts & various teachers losing their positions, that those with tenure have something called bumping rights. So if the original role they filled is no longer needed, then they have seniority to fill a different position if it's offered to them. Thus essentially bumping someone else, non-tenured, out of their current job. Even if that non-tenured teacher is quite literally a special teacher, & one who was actually recruited to head an inaugural program. A program which was newly created, out of need, for students with special needs.

Hayden's Special Ed teacher is one of three who are newest to the district, & she is non-tenured. That's like a double-negative.

After speaking with the Board of Ed, the Superintendent, our Case Manager, & other administrators, I was encouraged to put my concerns in writing.

I was assured even though the law is the law, that my opinion would not be spoken in vain.

Here is a substantial portion of my letter with certain information & names withdrawn, or abbreviated, due to privacy:

"Hi Mrs. P,

...I understand you are not personally in a position to wave a magic wand (I so desperately wish I had right now), but I appreciate you helping me understand the importance in sharing my views.

I certainly wish I were in a position to NOT have to worry about anything so serious from one school year to the next, but as you know when you have a child with special, or different, needs— there are new challenges every year.

As I believe you are aware, Hayden is currently a first grade student at FMB & he has a genetic disorder called fragile x syndrome. This is not as common a household name as something such as autism, but incidentally this too is a hidden disability. Even more interesting, fragile x is the number one known cause of autism & the most common inherited form of intellectual impairment.

What this translates to in Hayden’s case— because the spectrum of how this affects people with fragile x is broad— includes, but is not limited to: global developmental delays, general anxiety, & sensory processing disorder, to name a few.

Consistency is crucial to set Hayden up for success in terms of almost anything in his life, but particularly details pertaining to his education. So when regular circumstances such as a teacher’s retirement will affect staffing, & someone like my son is absolutely going to notice this & be affected by it, I am even further motivated to find any & all ways to maintain consistency wherever possible.

In the world of real estate we hear ‘location, location, location’, & in the world of fragile x (or any student with special needs) we know ‘schedule, schedule, schedule’ & ‘consistency, consistency, consistency’… because this is what keeps our kids calm, able to focus, able to attend to task, & ultimately able to succeed.

It goes without saying that there is a population of students who will be affected by any change, but referring to my son for example & considering retirees first… next year the friendly, familiar face of the secretary whom he has seen in the front office every day since he started at FMB back in 2008, will be a new face. Then there’s the teacher he is finally growing comfortable with in art class whose position will also be filled by a different face next year… & this is an area in which Hayden has to put forth a tremendous amount of effort to complete a project, & sometimes he can feel overwhelmed even just from a sensory standpoint. But if you witnessed his own sense of pride when he does finish a project, then you would know how he is very aware of his own accomplishments.

And probably the one retiree whose discontinued presence will affect him most, is the nurse who administers Hayden’s medication every morning. She has been a familiar, trustworthy face to him for the last five years… someone he has such high regard for, that she is able to help with something even his very own parents have a challenge with at home.

Again, these are just some of the changes simply occurring due to various retirements.

But adding to this, are the changes from budget reductions, which ultimately cause many shifts in staff. Consider music for example. This was the very first year that my son had the opportunity to participate in a school concert. Because of his anxiety, I was offered the chance to observe their final rehearsal. Since he might or might not stand among his peers on the night of the actual performance, this was an opportunity for me to see him enjoy being on stage.

But apparently just the anxiety of the rehearsal alone proved to be almost too much for him, & he became physically ill a couple of times. Finally he was calm enough to sit with his Aide near the others, but was unable to bring himself to stand with them. On the actual night of the concert we had to play-it-by-ear, so as to not exacerbate his anxiety. Somehow we did get him in the car & over to the school, but then there was a substantial amount of wait time because the Second Grade performed first.

Hayden’s Aide was able to encourage him up to the stage (with her), but he would not stand with everyone.  Then when the First Grade performance concluded & the Second Grade joined them for the final part of the concert, she casually let go of his hand & told him he had to move over to make room for the other kids. He was taken off guard but shuffled towards the center of the row.

Every time he looked up his eyes went straight to Mrs. T. She is the face of someone he knows well, & just by looking up at her he was able to stand among his peers & participate in his own way. It literally brought tears to my eyes & as a parent this was a surreal, incredible, unforgettable moment.

It wasn’t about pressuring him to participate just because everyone else does. It wasn’t about doing this for me or for the camera. The fact is I just wanted him to know that he can do this.

To all of the aforementioned points, if there are any areas we can avoid inconsistencies then that is exactly what we need to do. Hayden’s General Education teacher will change from year to year & that is to be expected. Yet each time when this does happen, it is still a major transition for him. (He is still not fully adjusted to the new transportation in place this year, either.)

So therefore maintaining the role of the irreplaceable Miss B is without a doubt, a primary concern.  

I know I have said this before & I will reiterate, having been raised the daughter of a special educator I can understand this from both sides. But I also understand that we should be on the same side. It’s our job, as parents & as administrators, to ensure that a program is carefully formed with every attention to detail in order to provide a proper education. We know his current education plan to be proper based on progress.

I understand that due to certain laws, many people have their hands tied, so-to-speak. I can appreciate the difficulty in considering anything that might set a new precedent. But with all do respect I don’t consider accommodating a child with special needs as setting a precedent, but rather, adhering to one.

Please pardon me for sounding rather forthright, & this is not directed at you personally in any way, but apparently somewhere along the way it was dictated that all teachers would be bucketed into one of two categories: either tenured or non-tenured. But you see, as a parent this hardly convinces me that budget decisions are being made in the best interest of the children.

There is obviously a reason that these kids have IEPs. Luckily at some point society learned education programs need to be refined to fit the needs of a student, & not the other way around. I strongly believe that particularly during their elementary education, these are the years which will shape the rest of their life.

This is about much more than the fact that Miss B holds a special education certification & she was hand selected following a very careful, thorough, long interview process specifically for the MD program. This is about much more than the fact that it was agreed she was the best candidate to head the program, since its inception. And it’s not just about the fact that she is very highly regarded by the district (rightfully so, I might add), or the fact that she is very highly regarded by her colleagues.

The fact remains that none of the aforementioned automatically makes her the best teacher for our kids… she does that all on her own. Not her certifications.

Initially when Hayden joined FMB, it was during a summer session in the Pre-K program. That year the summer teacher was different than the one who would resume in the Fall. She was a lovely & pleasant woman, very kind, & eager to help.

During an innocent conversation with a neighbor, whose daughter had already been through the same program, she said something to the effect of, “Yes, I remember her,” (meaning the summer teacher). “She is nice,” she continued, “but she’s no Mrs. L.”

And in September, from Day One when the regular school year began, I immediately understood what she meant. It didn’t take a whole semester… it didn’t even take a week. The way that Mrs. L immediately engaged with all of the students, & looked at my child in such a way that I knew in my heart she saw the same potential in my son that we do… is not a qualification you can find on any résumé. Likewise, this is how I regard Miss B.

A couple of years back we had a specialist from a fragile x clinic in NY come all the way out to Andover to observe Hayden for a day. Her name is Dr. Vicki Sudhalter & she is with the Institute for Basic Research at the George A. Jervis Clinic on Staten Island. She has been working with families & children for more than 30 years. Throughout her career she has observed students in countless numbers of schools & with a very broad spectrum of varying abilities. One of her many areas of expertise is understanding how to detect when a child with fragile x may become overwhelmed, or hyperaroused as they call it, & how to prevent this. For people with fragile x syndrome, self-regulation is a constant challenge.

Immediately following Dr. Sudhalter’s visit at FMB, she told me that the people who work with Hayden “renewed her faith in education.”

I hope that the number of parents reaching out, or dare I suggest lack thereof, is absolutely no indication of how critical this is. Any such silence should certainly not translate into compliance of changes, or lack of concern over them. All it means is one of three things— there are likely parents who do not yet know of this issue, or there are parents who may know, but do not know what to say or who to address, & then there are parents who are misled to believe their opinion ultimately won’t matter. I support the contrary.

Near the beginning of my short novel here, I mentioned some characteristics about Hayden but I left out the most prominent ones— his smile, his engaging personality, his desire to be social, & his overall charisma. He is a happy kid who likes to do well, dress well, make others proud, & have opportunities to be proud of himself. He wants to be successful because thanks to someone like Miss B, he understands what that feels like.

Hayden’s inner confidence is certainly not something anyone can put a value on, & should never be jeopardized by any budget. My husband & I are active members of the fragile x community & between all of the conferences & various other events over the years, we have literally met people from around the globe. Anyone we have shared our education experience with is completely in awe of the stories about the people who work with Hayden— his team of superheroes.

Of course if you ask any of them, they will say that Hayden is the one who wears the cape." 


Sunday, May 12, 2013

a woman's wealth

Oh, I could go on & on about how wealthy I am.

Even if I only think about the women who have impacted my life-- because it doesn't stop there-- but you could say I've been spoiled with nurture for as long as I can remember. I believe I continue that trend with my own son, as well.

I have a rich heart because I am loved by a mother & a sister, each with a heart of gold. I have the memory of that love from one grandmother, & the continued love of that kind from another.

And when Hayden came into my already-wealthy world, there was yet another new "X" on the treasure map (quite literally).

But to all of the women out there who are "only" somebody's daughter, or sister, or aunt, or friend... you might not be a parent but you don't need to be... not for someone else in this world to feel they wouldn't have life if it weren't for you.

So I actually want to wish a happy mother's day to all women, including "moms" who are not moms as far as we define a mom.
Life is not about how many car seats we have, or whether or not we will become a grandmother one day. It's not measured by how many drawings & paintings cover our refrigerator doors, nor is it defined by how many pairs of different size shoes are left by our front door.

I believe it's measured in the way we care for one another, whatever capacity that may be.

So for the moms who are mother of one or mother of many... for the moms who are also advocates & continuous caregivers... for the moms who have to be both parents... & for the "moms" who are not technically a parent at all...

I wish you that genuine fortune of being thanked & loved by someone else in this world, who feels they would never be here without you.

And I hope my son grows up knowing that is just how he makes me feel.

Monday, May 6, 2013

my friday night date

Hayden is like the weather.

Not impossible to predict, but often unpredictable. Good on most days without perpetual natural disasters, but occasionally a stretch of gloomy.
When he is fair & calm, his warmth feels contagious to your mood like a gorgeous day. But just like the weather, when a storm does hit, hell hath no fury like a child in complete meltdown mode.

So, we try to keep an eye on the weather the same way we think ahead in terms of his schedule, & we attempt to prepare ourselves the best we can.
That could mean an umbrella, or a plan B, or both.

To that point, every now & then we decline invitations. I know this sounds awful but there are certain situations, when skipping something is sadly the better option.

People who really know us & know Hayden... they understand. People who do not understand, well... you fill in the blank. (Usually the people we choose to surround ourselves with are certainly not the latter.)

So with a bit of regret we declined a birthday party invite the other night. It was being held at a party place which would be total sensory overload for H... but the best thing ever for most kids his age. We are forced to pick & choose when to say yes according to factors such as venue, day, time, & how many guests he will or will not know.

Meanwhile, I learned that our PTA was hosting a Mother/Son Event at the upper elementary school the same night. I really wanted to go with H but I know better than to expect that he will eagerly accompany me.

Then of course in true H last-minute fashion, he decided he would go with me based largely on the fact that I allowed him to wear the dreaded "blue" shirt again (it's actually turquoise) which he has recently been obsessing over.

Had a tough time getting a picture before we left, but before long we were off! I even caught him smiling on the way in.
And then next thing I know... there we were:

We stayed for about a half an hour & then he told me he was ready to go home. On our way out of the school we stopped in the bathroom & he peed :) Another successful dry-boxer-brief outing!

Nothing particularly unforgettable happened during those 30 minutes but I think I will remember them for the rest of my life.

(He sure left some nice H's on the table:)

That's right, folks.
Hayden was here 5/3/13.


Thursday, May 2, 2013

every behavior has a purpose.

If we can blame waking up on the wrong side of the bed for a difficult morning disposition, then my child may have woken up on the wrong side of the universe today.

As parents we must exhibit extra patience or we'll exacerbate the situation, particularly when you have a child with special needs. The experts also tell us to pay attention to antecedents (if I had a mere penny for every time I heard that), & we're told that every behavior has a purpose.

In that case, I will say in my most calm, soft voice...
antecedents can be completely invisible, apparently I'm supposed to be independently wealthy, & my child clearly has a whole lot of f#@%*^g purpose in life.