Clouds, May 2010

Clouds, May 2010
Clouds, May 2010: This picture was taken from the car window on Route 80 in NJ. The lines in the sky are obviously from planes, but the fact that they form an "x" caught my attention. And after I snapped the pic, I noticed the cloud to the left as it looks like a boy's face.

Thursday, September 11, 2014


Someone recently emailed me a flyer about an upcoming fundraiser-- I know who it came from but I do not know them well, & only knew this person for a short period of time. The fundraiser is a social event at a restaurant, so a portion of the proceeds will benefit a particular foundation. It's an organization which supports research for a rare genetic disorder that their relative has; a relative of the person who I barely know in the first place. (The genetic disorder, by the way, happens to not have anything in common with Hayden's.)  

Although I do respect the fact that there was a personal message, on the other hand, I don't love what it says:

I know you understand the need for research for genetic disorders. Please share this flyer with your contacts."

That rubbed me the wrong way from the get-go. This person is making an assumption that I should be interested in a cause of some kind, & furthermore, no "Hi, How are you?" or "How is Hayden?" or anything... & then asking me right off-the-bat to pass it on when I don't even know what it is.

Following a paragraph summarizing how this person's relative has handled their experience, the email concludes with,

"My [relative] wants to give back to the organization that has helped [them]. I would greatly appreciate it if you would attend the fundraiser and/or make a donation in [their] name.
[First & last name of Sender]"

We met one another through the local school district. For a short period, this individual was in an appropriate position to address my concerns (during one of the many times I was advocating for Hayden). My input seemed well-received & our conversation productive. I expressed my gratitude, just as I am always grateful for anyone who is receptive to the proper support for Hayden.

However I would eventually learn that none of my concerns were even followed through, despite the reassurance communicated to me. There happened to be a change in staff, but we are adults & that shouldn't make a difference. We have responsibilities even when we're passing them on to someone else-- especially if you work within the education system & this is solely for the benefit of a student. Furthermore a young child, & even beyond that, one with special needs.

When I initially saw the email I wasn't sure why I was mad... was it because I felt let down? Does that make it okay to say this person had no nerve to ask me for support? That seems mean on my part or at least unreasonable.

The truth is my standard answer when solicitors call, for example, is always the same, "All of our donations go towards foundations which support a genetic disorder that our son has." My wording may vary but the thought never changes. 

Despite the fact that I've always felt these calls are rude, I used to often send back at least a little money if I received a request for donations in the mail. I feel those are less obnoxious. Of course after I became a mom & then ultimately learned I was a parent of a child with special needs, you could say my global charitable desire sort of dwindled. My energy focused on one.

I felt, & still feel compelled, to put all of my efforts there... to the fragile x community... because my son is that community... my friend's children are that community... & if you include associated disorders my mom is that community, my aunts are that community, & (unbeknownst to him) my late grandfather was that community too.

Fragile x became a steady part of our conversations, & our lives as a whole, when I was 31 years old & my only child was 17 months of age. 

I had a lot of hope back then that there could be a cure one day. I started to learn just how big our little community is (if you know what I mean), & that our impact is actually widespread. Our future potential even more so. It's a simple equation: awareness adds up to dollars which add up to research funding, & we all know what that equals.

A part of me does not necessarily have hope for a complete cure anymore, but I do believe that the medical community will continue to discover treatments. And ultimately one that is effective enough to significantly improve the lives of people affected by fragile x syndrome.

I don't want to promote any ideas that we shouldn't support one another-- of course we should. I, myself, have encouraged people to donate to the fragile x community even if they're not literally a part of it.

After all, contributions are like handing out hope. But I guess I am reserving mine for Hayden.


Friday, September 5, 2014

just fine

I am fine as long as Hayden's fine.


Post stomach-bug, or whatever that was, Hayden had a great first day of school. His teacher said he seemed to really enjoy himself.

The morning of Day Two-- well, let me backtrack-- the evening of Day One, nighttime routine got stalled & Hayden consequently fell asleep much later than usual. This will not necessarily affect his wake-up time but on Day Two it did.

Hayden gets up on his own because he has an extremely accurate internal clock (or something). This is wonderful because he needs just the amount of sleep that he needs-- so if he's not done, he should not be woken up. But likewise if he is done, you can bet he will be ready to go about his day regardless if we are too.

I will only attempt to indirectly wake him up if we are really in a pinch. The morning of the 2nd day of school, by about 30 minutes before pick-up time, he was still out. His breakfast was ready & being kept warm, so at that half hour mark I decided it was crunch-time.

Everything went fine at first, but after he was dressed he would not sit to eat his eggs. I think he just wasn't finished waking up yet-- he wanted to relax on the floor with his iPad & that was that.

I tried prompting him, nudging him, reminding him, & so forth. Nada.

Finally I knew that the school van must have been in the driveway by then-- I didn't even have to look-- so I calmly said I would reheat his breakfast & pack it to take with him. But as soon as he saw the little container he did not want me anywhere near his breakfast plate. (By the way, it wasn't until later that I realized the van driver had in fact texted me when they were in the driveway. I think they were waiting there for about six minutes.)

Basically it was time to go NOW but at that point he sat & began eating. His precious breakfast in which I have to hide one of his meds.

But aside from that I felt horrible in that moment, because why shouldn't he be able to sit & eat his breakfast at his own pace. I think we both knew what was going to happen next, but I had to say it anyway.

So I stated that I was going outside to tell the driver that we would see her later, & that H would be on the route home. He immediately got upset & said that he wanted to go with her, but I reiterated that she could not wait for him because there were other students to pick up.

Hayden does not want to hear that, & it is not helpful for him, but that's what came out of my mouth because it was the truth. I quickly tried to fix the moment by saying that I wanted my own turn to take him to school.

I've used that line before but this time it wasn't working. So I headed out the door so the school van would not be waiting in our driveway any longer.

He was still in the house but I could hear him from outside, getting upset. I told the driver & the transportation aide what was going on, at which point H stood at our front door, consequently causing them to pull out of our driveway even slower (making things significantly worse). Anything that prolongs transitions is just. Plain. Bad. So I headed back towards Hayden because there was nothing else for me to do.

Luckily he followed me back in the house. But he was truly sad & sort of fell to his knees right in front of the television, wiping his eyes with his bare hands-- not the typical frustrated & tense kind of sad, but more as if he seemed disappointed.

When I entered the kitchen I saw his breakfast plate on the corner of the table, with most of its contents piled inside the plastic container beside it.

I don't know what it was about seeing that-- but it just broke my heart & I got this big lump in my throat. He was trying to go along with my first suggestion but he just couldn't organize his mind & body to agree quickly enough. His brain just can not do that sometimes.

Eventually something distracted him, we changed the conversation, & I drove him to school. We arrived there about a minute before the van. As I got Hayden out of my truck, I tried to recap for the new aide what happened. He tried to reassure me & nodded, & then he prompted Hayden towards the entrance. Hayden walked off with him-- not so much alongside him but near him-- with his handkerchief in his hand, & his hand near his mouth.

I did not have time to stop back home after drop-off, & before work, so  when I arrived at the office I was not quite put together. My wet hair had been pulled back in a clip & clearly forgotten, & I had flip flops on instead of shoes. Luckily today was Friday (& it's still summer weather) so it was not too big of a deal, but I definitely felt the way H had earlier-- steps were missed in my routine. I totally get it. You do feel unsettled.

Fast-forward to a couple of hours later, & I saw an email from the mom of a fellow classmate at H's school. We know them outside of school, too-- the family happens to live in our neighborhood. Well, it was a brief email to me & bunch of other parents reiterating the importance of attending the next Board meeting.

Turns out that her daughter's aide was abruptly let go. On the first day of school.

Long story short, this wonderful aide who had been working with her daughter throughout the past four years, was apparently one in a group of layoffs-- people who were contracted through one of the local agencies. I texted her after seeing the email, & then a couple of minutes later we were on the phone.

During our conversation I also explained about the change in Hayden's Aide this year, too. And furthermore, the only reason I even found out was because I ran into another parent at the grocery store over the summer. She apparently knew that all of the Aides in the special ed room were going to be different. 

Suddenly I realized just how lucky I was to have that chance encounter-- I mean even though I was grateful at the time, I was equally furious that this was never communicated to me from the school. I tried to make excuses in my mind-- new Principal, new Superintendent, new Education Consultant on the CST-- but really the lack of communication is inexcusable.

As I said in the Day One post, I think H is going to have a delayed reaction to the transition of the new Aide. For now, he is just going through the motions of being back at school & he's happy that his routine has resumed.

At the end of the day today the teacher note said that Hayden did great in health & music class, & had an awesome day.

As for me? I'm fine as long as he's fine. But clearly there's no end in sight for doing my part, to make sure it's always just so...


Wednesday, September 3, 2014

'twas the night before

So I arrived at the school Tuesday afternoon to deliver my annual FX talk, for the people who will be working with Hayden this year. Grade 3. Goodness gracious.

Anyway, Tuesday was one of two Teacher In-Service days, & I was scheduled to speak 30 minutes before they were dismissing. (Who knew they had a scheduled dismissal time for an in-service day.) I arrived a little bit early & the new Principal seemed harried to gather everyone. When I realized it was down to 25 minutes before dismissal, I finally asked if I should start heading to the library (which is basically at the farthest end from the front office).

Instead, they directed me to the (new) Principal's office (I'll stop saying the "new" part). There were a few adults assembled around a table-- I recognized his case manager, the nurse, & his Special Ed teacher Miss B. Then his new Gen Ed teacher came in as well. I had a chance to meet her when I came home from vacation for a couple of days last week-- I had already scheduled a meeting when she was at the school for new hire orientation. She is young, very friendly, & seemed immediately receptive to my input. I felt hopeful after we spoke. I also think it's fantastic that she herself attended that very school when she was a kid, & now she is back there teaching!

There were two other faces who I didn't know, but came to learn that one was a new Education Consultant & the other was the art teacher (who I only knew by name, but had never met).

I have no idea why we were crammed in the Principal's office, when previous years we had our little discussion in the library where we could actually breathe... & anyone who wanted to join, could... but here we were. Just a handful of us...

Granted the first year I did this there were probably 20 people present, & last year it was down to about a dozen, but having only half that in front of me did not seem right. Where was his Aide-- both past & present-- as the former one of SIX YEARS said she would join us, & his current one (whoever that would be) was supposedly asked to join us as well...

What about the therapists? And all the other teachers for specials-- not just art... where was everyone?

We were now down to about 20 minutes before dismissal. I heard the woman in the front office begin to make an announcement over the loud speaker & I was finally thinking, "Oh, good-- maybe she is just reminding everyone..."

Not exactly. She simply stated that the school was closing at half past the hour. Like being in a store, & they're reminding you it's time to bring all of your purchases to the front.

The Principal popped her head in the doorway too see if I wanted to go ahead & start, but I asked again about the new Aide, to which she sort of stuttered, &  then said she would be right back. She returned with a young, big fellow who I had never seen before. By now it was about 15 minutes prior to the school being locked up, & someone had literally already turned out the lights in the main hallway.

Well, so much for the individually-wrapped Hostess treats I brought, with napkins, & bottles of water for everyone... certainly no need for refreshments this year!

I plopped the mini cakes in the center of the table, passed around some water, & began speaking.

It turns out the young man who the Principal came back with, would be Hayden's Aide.

I gave everyone a copy of his Positive Student Profile brochure. I prefaced the conversation by saying that in the interest of time I would not be able to talk through all of the points, & began by directing them to my contact information on the back.

I primarily focused on the importance of consistency with Hayden, & looked towards the new Education Consultant who was thankfully writing this down. Then I made sure to address his new Aide when I explained about working through behaviors, & to please speak up if he ever needs help. Otherwise, I wanted to emphasize that everyone else should ignore them because the more attention that the staff gives to Hayden if he is having a tough time, then the more attention the students will give to Hayden... & I do not need them noticing him when he's having a rough moment.

(It is important to explain this to people, because it obviously goes against our natural instincts to help someone when they are struggling. But assuming Hayden's Aide is by his side, everyone else should keep doing what they were doing & leave them be.)

I looked at the clock again, concluded the discussion prematurely due to timing, & we wrapped up a couple minutes past the designated closing time. Miss B stopped to speak with me in the hallway, but unfortunately the new Aide did not.

Not that I "blame" him... but I do feel like the success of Hayden's day is basically in the hands of a stranger. However according to Miss B, Hayden at least knows of this person because he was an Aide for another 2nd grade student last year (which means it is someone in H's grade, although I do not know who).

I will say when I got home from the school yesterday, I asked H if he knew who Mr. M was & he said, "he's an Aide." So that is a good sign that he remembers him... I guess... (I'm grasping over here...)

Definitely the highlight of my visit was actually when I was leaving. I saw the art teacher in the parking lot & long story short, her niece's son has fragile x! And it turns out that I met her niece at the Conference in California this summer! Crazy small world we live in.

This afternoon I returned to the school to drop off some items that Hayden keeps in the Special Ed room, with Miss B, just in case of emergency. I figured this way he would have less to schlep on the school van tomorrow. I was able to get Hayden to come with me-- it was a close one, though-- typical fragile x with yes then no then yes... & the same thing happened when we actually arrived at the school. But I have trained myself to not react (it isn't easy), & just going about it as if it's not a big deal either way (without actually saying so). He finally, slowly, got out of the truck & we headed towards the entrance of the school.

We happened to run into several familiar faces including some who were actually just stopping at the school to visit, & no longer work there-- but it was great, because it was only us & everyone we passed wanted their dose of H :) Hugs were given one by one & it took us a few minutes to make it to the end of that front hall, but I didn't mind. We brought the shopping bag of stuff down to Miss B's room, he got a preview of the new setup in her classroom, & shortly after he was ready to go.

By some miracle I was able to detour him to meet his new Gen Ed teacher. He actually extended his hand for a half-shake of sorts, & I was grateful for that much. At least now he knows where he is going tomorrow & who she is.

If this year is like all others, Hayden's will begin with the honeymoon phase (as his team calls it). He will be happy & compliant & everything will be coming up roses. The part I am worried about is when it really sets in, that this is the Aide who is now going to help him through his day, every day. He is still talking about his former Aides-- including the one from summer who he knew well-- so I don't think it has sunk in.

Trying, however, to focus on how grateful I am that at least the transportation component has not changed. And at least we have this year & next year before the BIG transition to the upper elementary. Oy.

And I am thanking my lucky stars that two hours ago when I sent a nervous last-minute text to Miss B going on & on about whether or not Mr. M knows this, that, & the other thing-- that she (a) answered, & (b) told me that she already told him that (bless her soul), & (c) said, "It's all good! We will have a great day!"

In the interim, the scene in our house tonight was me sighing over years worth of first days of school pictures, Dan sitting contently in his office, & our no-longer-ill & back-to-his-hyper-self child jamming in the dark living room by the light of the iPad-- to the apple bottom jeans song, before switching to the oldies... 'come go with me'... using his loud leaf blower toy as his instrument...


Tuesday, August 26, 2014

the next 48 hours

So for those who are part of my social media life, & have been witnessing the excessive amounts of pictures I've added lately, you know I have not been home.

But I am back right now, sans spouse & child, to return to work for a couple of days while they continue frolicking on vacation with the rest of my family. The decision was primarily driven by the fact that my days off are limited... however, there is another not-so-minor detail that also drove me home (pun intended).

Very long story short, there is a new Principal at H's school & there is a ripple effect of changes & inconsistencies as a result. Including details that even I did not see coming, & therefore did not make a priority part of our team conversations during his progress meetings & IEP, for the upcoming 2014-2015 school year.

The Principal who had been there before, had been there for a very long time & was simply retiring. When he did so, the Superintendent actually became the acting Principal for most of the last school year. This person made it sound as if she personally was advocating for as much consistency as possible (as far as the Child Study Team was concerned).

Furthermore, then there was the interim Principal who assured me that Mrs. B would be H's third grade teacher because she has in-class support. Her words were, "I see no reason why Hayden would not be placed in Mrs. B's class." This was great news, because Mrs. B was the one 3rd grade teacher that Hayden's CST felt would be best for him.

So before the last school year concluded, I was already communicating back & forth with Mrs. B & preparations for next year seemed like smooth sailing.

But then I got the letter. The "Welcome to Third Grade" letter & the "this is your child's classroom assignment" letter. Which not only made me feel like I got sucker-punched in the gut as it surprisingly specified, in black & white, a teacher's name who is NOT Mrs. B... but to make matters worse, the other name that was specified made me feel like I ought to reach for a brown paper bag altogether.

It said Mrs. S.
Oh, I know that Mrs. S alright.
A couple of years ago Hayden spent some time in her classroom, when we were preparing him for the transition from kindergarten to first grade. Part of this meant that Mrs. S would attend our team progress meetings. Which she did, & she certainly made her presence memorable.

I am telling you when this woman spoke about Hayden she used to look as though she could barely control herself from shaking her head. She would tell the team that when Hayden was in her classroom, he just wasn't getting anything out of it.

Needless to say this sparked one of my many famous advocate letters... & another long story short, Hayden was not in this woman's class for first grade.

So therefore the only reason I did not actually fall to my knees when I saw her name printed in black & white, on that "Welcome to Third Grade" letter, is simply because I was already sitting when I opened it.

A couple of emails & frantic phone calls later, I came to learn that Miss S (not Mrs. S) was a new hire. Same last name... different person. How the hell was I supposed to know!
Anyway, it's still not Mrs. B which I don't understand & I think sucks. However, needless to say, in comparison to who I initially thought it was, I guess I can deal with someone new.

The teacher bit, believe it or not, was my second moment of panic. The first episode happened when I ran into another mom at the grocery store, who tipped me off to some information about the aides for next year. And apparently after I did some independent digging, I was horrified to learn that the woman who had been working one-on-one with Hayden since 2008 ... was reassigned.

So here we are, 9 days before the start of the new school year & I still do not have confirmation of who his aide WILL BE.

This is the other reason why I am taking a break from our vacation. The goal is to get this sorted out in the next two days, while I am in town, & before the long holiday weekend.

For now, at this hour on a Tuesday evening, there is not much more I can do.

When I returned home to our empty house earlier this evening, I ran the dishwasher, did the laundry, caught up on my DVR'd shows, got the mail (although I didn't go through it yet), & then... the anxiety set in.

The silence in the house is not only weird, but I have little to distract me from my worrisome thoughts. For now, the plan is that I will rejoin everyone for the last night or two of the vacation. So therefore during the next 48 hours I have a serious amount of work on my hands. Not just getting to the office.

Picture uploading is officially on hold for now...


Friday, August 15, 2014


Hayden prefers music with pep so I am guessing he would not love this song. But when I listened to it a second (& third & fourth) time the lyrics made me think of him. 

Ben Howard, Depth Over Distance

It's a love song that hardly has anything to do with the love between a parent & a child. However, it is still about a bond between two people & in a broader sense the meaning is just as profound. 

This was the background music of a beautiful yoga video circulating on social media last week (it was published back in 2013). The youtube video is of a man & a woman performing acroyoga (yoga + acrobatics) along a waterfront. It is completely mesmerizing. It is a moving visual of strength, balance, & grace. And all I thought about the first time I heard the song, were these two gorgeous human beings because that's what was in front of me.

But when I step back, as with most things in my life, all thoughts eventually lead to Hayden. Most of what I see, hear, & experience-- at some point-- redirects me to how would Hayden react? Whether or not he would enjoy it... if I try something new, or learn something new... it could be a movie... an idea from a book... a conversation... a place... 

(If he saw those two people doing that, specifically, to be honest he'd probably say that's weird & then move on.)
But back to the song & why Depth Over Distance made me think of my H.

Not be a "buzzkill", but I am mildly terrified about how much inclusion & fulfillment he will have in life. To me it is blatantly obvious that his fx gene gets in the way of his ideas & interests. Often times, at the very least, the gene will interrupt Hayden. 
Occasionally it will stop him altogether. 

But something about this song... when I hear parts of it I feel-- yes, feel-- a different viewpoint. 

In the song I believe depth over distance refers to the relationship between two people. But out of context, depth over distance is exactly what I would hope for Hayden. Both would be ideal-- in terms of a long & fulfilled life-- but what good is a long life if it is not fulfilling?

I started to take a closer look at the lyrics...

Depth over distance every time my dear
And this tree of ours may grow tall in the woods
But it's the roots that will bind us here,
To the ground

For starters, the word depth makes me think of all the many layers of Hayden. My hope is that people allow themselves to see beyond the first one. I want nothing more than for Hayden to truly be able to reach for the sky. And for him to know that I will never not be with him.

And depth over distance was all I asked of you
And I may be foolish to fall as I do
There's strength in the blindness you fear
If you're coming too
If you're coming too

We are often afraid of what we can't see. But what if, instead, we draw strength from that-- if we allow ourselves to. Otherwise that not-knowing will scare us (I choose to see that as the foolish part, even though I am guilty of it)

So hold on; wait until that lone sun
Breaks from the arms of the Lord
Yeah hold on, though we may be too young
To know this ride we're on

Despite what we say or do, Hayden does most things when he is ready & not before. At the same time he often needs a visual cue to encourage him (which is exactly what that part about the sun makes me think of). One of the many interesting things about Hayden, is that he seems to understand when he doesn't know something. Therefore he is not fearless-- he is smart & he is cautious.

Oh depth over distance was all I asked of you
And everybody 'round here's acting like a stone
There's things I'd do, darling I'd go blind for you
If you let it grow sometimes, let it grow sometimes, let it grow
Just let it go sometimes

The only stones around Hayden are the people who do not have the depth that he does. Every day I try to help him truly see. On difficult days when I feel drained, I may feel like I lose a part of myself, but as long as he takes what he knows & does something with it... as long as his life has depth... that is all I would ever ask of him. So all those parts of myself are not lost after all, but rather they are passed on.


Tuesday, July 29, 2014

are you an eXpert?

In recent weeks people within the fragile x community have been hosting, contributing, and/or participating in fundraisers, walks, & other events, to let people know about fragile x during Fragile X Awareness month!

As July is soon to come to a close, I wonder... would YOU be able to answer this question:

What is fragile x?

There is a big difference between being able to answer this, & simply knowing someone who has fragile x.

If you are not confident that you can explain fragile x, & you're willing to admit it :) I hope you agree to quiz yourself.

Fragile x syndrome is:

genetic   b. caused by autism   c. both a & b

In total, there are ____ fragile x- associated disorders.

a. One   b. Two   c. Three   d. Four

3. National Fragile X Awareness Day is on:

July 1st   b. July 11th   c. July 12th  d. July 22nd

4. When it comes to fragile x, a person is either a carrier of the gene or they have the mutation. What are the chances of an affected female passing on fragile x to her children?

1 in every 4   b. 50% chance with each pregnancy  
depends on the sex of the child   d. it is randomly passed

5. Fathers who carry the fragile x gene in premutation form will:

only pass it on if the mother is a carrier, too
only pass it on to their son(s) but not their daughter(s)
only pass it on to their daughter(s) but not their son(s)

It is possible for the fragile X premutation to be passed silently within a family, for generations, before a child is born with the syndrome.

This statement is true as-is
True, but only in families of a certain ethnicity
Partially false-- the inheritance can only skip one generation  
This statement is completely false

So, how did you do?

1. The answer is A. Fragile X syndrome is genetic. Fragile X syndrome is not caused by autism. However, fragile x syndrome is the most common known cause of autism.

2. The answer is C. In total, there are 3 fragile x-associated disorders:
(1) FXS- fragile x syndrome
(2) FXTAS- fragile x-associated tremor/ataxia syndrome
(3) FXPOI- fragile x-associated primary ovarian insufficiency

3. The answer is D. National Fragile X Awareness Day is recognized & observed on July 22nd, during Fragile X Awareness Month!

4. The answer is B. A female has a 50/50 chance of passing on fragile x to each of her children.

5. The answer is C. A male carrier can & will pass the fragile x gene to his daughters, & only in a carrier form.

6. The answer is A. Yes, fragile x is often passed silently within a family for generations.

So, if someone should ask, please tell them:

fragile x syndrome is a genetic disorder. It is the most common inherited form of intellectual impairment, & the number one known genetic cause of autism.

Please explore to learn more!


Monday, July 28, 2014

people first

There is no such thing as a diagnosee. There are however, people with a diagnosis.

Just something to think about the next time you say "Autistics" or "Downs" or "Fx-ers". I do not know what any of those are, but I do know who humans are.

Having a diagnosis is not the same as a race or an ethnicity.

This is not just my thing. I am not making it up.

It's called People First language.

"People First language is used to speak appropriately and respectfully about an individual with a disability. People First language emphasizes the person first, not the disability."

I realize I can not stop all people from speaking this way, all of the time.

I can't even stop some of the people from speaking this way, all of the time.

But if I can change the way that some people speak, at least some of the time... then I will. If you agree, feel free to pass it on.