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.

Monday, April 18, 2016

hi hope, it's nice to see you again

I have blogged about this many times before related to different situations... but just to reiterate there is no medication that is specifically indicated for the treatment of fragile x syndrome. However, there are many medications for treating some of the symptoms.


I struggled with giving my son any medicine in the first place. I told myself he was too young or too little or both, & that he just needed a chance to develop & learn. 
Eventually, roughly a few years ago, we realized he was going to need something to help him through the school day. Even with his carefully crafted IEP, & therapies, & so forth... it was clear at times he struggled to stay stronger than that "fragile x".

So when things got to the point that I worried more about my son not being able to reach his potential, than I did about starting him on a treatment regimen, we sought appropriate help. It was a journey & it is still on-going, & probably always will be. There isn't any one streamlined treatment plan-- not only because fragile x is a spectrum disorder but also because people change as they grow.

One of the challenges that we have, outside of working with specialists to figure out the appropriate dosing for Hayden, is how the medication is available. We can't even so much as get him to take a teaspoon of cough medicine when he needs it. Once when he was really sick when he was a toddler, & we were desperate to get an antibiotic in him, we put it in his milk because it was the only thing besides water that he would drink. And he REALLY loved his milk. And Mommy & Daddy made a REALLY big mistake because after that he wouldn't drink it anymore.

Over the years if Hayden got sick-- which thank goodness was not often-- the pediatrician would just prescribe twice the amount of medicine that Hayden really needed, in order to compensate for the amount that we KNEW he would throw up. We tried every trick in the book & there is absolutely nothing he will eat or drink just because he is told to... ESPECIALLY when he is not feeling well. And bribes proved useless. Also due to sensory issues he does not eat candy, chocolate, or even drink juice.

For his daily medications (to help with attention deficit & anxiety) my creative, sneaky ways have been relatively successful. Breakfast is usually his best meal of the day & he eats a large one consisting of a spinach omelet, blueberry waffles, cinnamon toast & more. And I prepare this full plate every morning of his life, because most days there are nothing but crumbs left. So luckily I found that if I crush the meds & smoosh it into a strip of bacon, he will almost always eat the bacon. The second dose at lunch-ish time is hidden in a pop-em. That is one of the methods the nurse has been using at school as well-- one med administered in a pop'em & the other med is a patch. The latter of which was a pretty tough struggle because Hayden can contort himself to pull it off nearly anywhere it's placed on his back-- even if it's in between his shoulder blades.

In recent months the Dr prescribed a similar medication in a pill form that is faster acting, for the times when Hayden does pull his patch off. It was not long before Hayden began tolerating the patch less & less while asking for the other medication more & more. And that was fine, but now he would be stopping in the nurse's office for a pop'em throughout the whole day potentially, because the other pill is not an extended-release. So this doughnut routine went from doable to less than ideal when we're talking about multiple doses.

When I say there is nothing we have not tried to get to where we are now, I mean it. But long story short, very recently we revisited the applesauce idea. It had not worked in the past, but H was starting to show interest in wanting to take the pill with a little cup & water the same way he saw other people do it. It totally didn't even come close to working, but that made us think maybe he was finally ready to try again with just one little spoonful of applesauce.

If we could get him to do that & we no longer had to worry about how the medication would be administered, or how we would sneak it in him, it would TRULY open up our options. One of Hayden's greatest strengths has always been his happy, engaging personality. He is a very social kid by nature. But recently I have witnessed how he struggles with following through certain situations. It is heartbreaking. And it is not due to lack of interest but more so affected by his inability to mentally "organize" & participate for the duration of an event (or an extended length of time in general).

For example the last few birthday parties he was invited to, two of them he attended for barely 45 minutes (down from his average which was probably closer to at least an hour & a half), & most recently the last one which was on Sunday he didn't make it to at all. Usually a sort of sensory-overload is what will make his brain decide he is done with an activity. (At least now he will say he wants to go home... it was even tougher when he was younger because he did not have much verbal communication until after he turned 5.)

And I know he wanted to be at that party on Sunday. But he also wanted to play outside after we came home (early, mind you) from a particular rec program he participates in... & he was also tired... but he also wanted to spend time with his grandparents who drove out that day... & he also wanted to go to the party so he wouldn't miss anything... & even if I map-out how it will all fit, it's as if he can't stop these thoughts from replaying in his head until he follows through with nothing.

I believe there are medications that can help with that-- nothing is going to work all of the time, but I know there are options which should work most of the time. We will try, & we have been trying, but we have also been limited because of how the medications are available... & what methods are successful to get him to take them in the first place.

Still I have remained hopeful that one day Hayden would eventually make the connection, that these help him get through the day better. 


Then this morning happened. Less than a half hour after Hayden arrived at school, I got a text message from his teacher that he pretty much immediately pulled the patch off. I sighed & felt a little bit sad & then I read the next message: "Asked for applesauce & took it no problem!" I couldn't believe my eyes & answered "Wow". She replied, "I know, so proud!" Then, through my very watery eyes I texted, "If he's consistent with that, this could be a game changer."

"Definitely!" she answered.

#HighHope

--

Tuesday, January 26, 2016

good manners

I am a daughter, a sister, an aunt, a wife, & most importantly a mom.

I had a very eye-opening experience the other day & although it was one of the more difficult situations I have ever been in, I suppose I am trying to be grateful that I have an opportunity to turn this into something educational.  

For the most part my kid is a typical 10 1/2 year old boy. Upon meeting him initially, one would not notice any distinguishing physical characteristics that would hint to what does make him unique. But as everyone knows he was born with a genetic disorder called fragile x syndrome. FXS is the most common inherited form of intellectual impairment, & the number one known single gene cause of autism. Not everyone with FXS has a dual diagnosis of autism, but about a third of the people do. Another major connection between fragile x & autism is that they are both hidden disabilities.

This is one of the millions of reasons that I put forth so much of my effort, into awareness. For starters I speak with the faculty at my son's school every year. I focus on those who will be working directly with him, but it's always open to anyone who wants to join. In addition, since first grade I have been visiting my son's class once a year at the beginning of each school year, to speak with the students about fragile x.

We try to focus on three common key points:
1. Fragile X is something he was born with, the same way everyone is born with certain hair color & eye color. You can't catch it.
2. You may see behaviors or hear speech that is different-- especially if a person with FXS is overwhelmed.

3. For the most part, my son enjoys the same things as everyone else. 

Near the end of the school year I also supply flyers about National Fragile X Awareness Day, to remind everyone to wear green on July 22nd. The school even changes their sign out front to help spread the message of support. And as a matter of fact, July 22nd is now an officially recognized day within our own township as well.

But as I was saying, we had a very eye-opening experience the other day.
The incident over the weekend involved a neighbor but our son was nearby during the altercation. It didn't start out as an altercation, but after an unsuccessful attempt to resolve calmly, law enforcement was contacted.

Although my son understands much more than most people realize, he still understands less than most. And in a situation such as the one from the other day, unfortunately the tension & tone increased his anxiety & confusion. In addition he has sensory processing disorder, so his ability to make sense of everything around him & appropriately tolerate it is often compromised.

So while the officer was speaking to the neighbors, & we could not hear everything they were saying, Hayden's emotional discomfort continued to increase. He ended up yelling out to the neighbors, "I hate you."

With that, the neighbor turned to the police officer & said, "See what I mean? If that kid curses at me one more time I'm calling DYFS on them."

I have been a parent, advocate, caregiver, guardian, educator & every role in between for more than a decade. I have never heard anything even close to that comment directed at me.

Before the officer left, I asked him if he could please come over for a moment. I can't give all the details of our exchange but he did say that the neighbor's words were a comment not a threat. And I said something to the effect of... "Well, I have never heard anything like that before & I don't know what parent wouldn't be upset by that." At that point my husband started to explain-- or rather reiterate-- that our son has special needs. And the officer said something along the lines of, "I understand but at some point you also have to teach him manners..."

Whatever came out of his mouth after that went in one ear & out the other. I don't "blame" him though, & I want to be clear about that. But in the immediate moment all I could think was that he does not know who he is talking to. In the aftermath, I realized I need to do something more.

Well going back to the live scene, despite the fact that I was now starting to get visibly upset, 
I proceeded to explain to the officer that the school is like our second family. Having been raised the daughter of a special educator I understood from the get-go just how critically important the home-school relationship is. I pointed to the neighbors & said I know they have lived here 10, perhaps 15 years longer than us... but we have been here for 11 years ourselves. I elaborated from there & said (not necessarily in this order) I am an active volunteer with various groups within our local school district... I am also a national volunteer with the (National) Fragile X Foundation... (I went on about some other information that I don't need to add here)... & then continued further just so there was no misunderstanding, & shared that our son has been to clinics from New York to California. Not only for evaluation but as a study participant (when our clinic visits can be reciprocally productive-- even better). And I also added-- which I did not have to-- that we happen to work with a team of specialists at Atlantic Health who collaborate with our son's team at school as well. 

And a few times in between those points I simply reiterated we are not those people. He started to say "I know", "I understand..." but I tried to politely interject that he might not know, because this is out of context.

He respectfully nodded & said if it happens again to give them a call.

ALL of this being said, society needs to understand that Hayden's response is not bad manners. Nor is it a result of bad parenting. It's a neurological event in response to being overwhelmed. It is not a choice. And even though he knows it's happening, he does not like it. I can guarantee he actually hates when he feels that way. He is intuitive enough to sense that he can't control it, & at the same time he doesn't want to feel out of control.  
 

There is a critical need for law enforcement agencies, first responders, & other community helpers to be able to objectively respond to situations. There are many people like my son who live with hidden disabilities. And just like any person with (more obvious) special needs, they deserve to be safely assisted.

For example, how would anyone outside of the fragile x community even know that pushing or hitting can actually be a need for sensory input. People with fragile x are never trying to be mean. They are just trying to protect themselves because they can not handle what is going on.

The other fact that is equally heart breaking, is that my son does realize the importance of respecting adults. If nothing else, because he knows they represent safety, stability, & understanding. I noticed over the years that the kids at school he seems to be most drawn to, kind of fit into those categories as well. They're the ones who just "get" him & won't judge him. He perceives them as safe.

So for ANYONE who reads this, please consider this a standing offer... I am more than happy to supply information, speak individually, or to a group.

It is the people who do not have hidden disabilities, who are the ones that need to maintain good manners.

--

Wednesday, January 20, 2016

long time no write

The problem with not keeping up with my blog is that when I finally get to it-- & not for lack of wanting to-- there is SO much to fill in.

Hopefully I can edit this post in the near future to add related pictures but for now, I just want to get it all down.

So my 40th birthday was on a Tuesday & incidentally that was the same day of the annual Feast at school-- hosted by the students in the LLD & MD rooms (special ed). It was very official-- we received an adorable invitation in the mail which also encouraged siblings & grandparents to attend as well. In addition, this year H's class actually shopped for the meal ingredients the Friday before. He did wonderfully at the grocery store staying on task & helping to locate all of the items on their list.

They worked hard cooking & baking for the next couple of days in school & then prepared the classroom. The desks & other tables were pushed together to form one long table, adorned with a Thanksgiving tablecloth & various little crafts the students made. There was a long buffet set up with students stationed in front of each dish-- H was at the beginning of the spread serving the all-important turkey!


And the day after the Feast-- (because his teacher is awesome & conveniently they had leftover ingredients--) they actually baked me a birthday cake & sent it home with him. I was beside myself. I tried to savor each moment from beginning to end, knowing that it would be his last Thanksgiving Feast at this school. I remember way back to his first year of preschool... there's a photo of him sitting at the head of the classroom table with a headband made out of construction paper, & a feather sticking up (at about the 1:05 mark if you want to take a peak at this link). And now here he was just this past November, a 4th grader, standing & serving the turkey.
 

That link, by the way, is to a video that one of his aides from preschool put together when he was graduating to kindergarten. Quite possibly one of the nicest gifts I've ever received. But if you have 8+ minutes to watch the highlights of his first three years at this school, just imagine that multiplied because he's been there now for a total of nearly seven.

He has pretty much grown up that this school & it's been a second home for him. I always knew middle school was coming in September 2016... I've been very conscious of that date for a long time. Funny how that doesn't make it any easier though.

Anyway, the afternoon before the real day of Thanksgiving- Thanksgiving Eve if you will-- I happened to discover a tiny problem in our kitchen. (Which turned out to be not so tiny.) I went to grab a small piece of paper I saw at the bottom of the cabinet next to the refrigerator-- that's what it looked like-- something that got stuck there by a little cobweb perhaps or a dust bunny. But when I got close enough to pull it off I realized it was a small patch of white mold. Upon closer inspection I realized the floor was moist to the touch, & the cabinet was not only warped at the bottom but it was moldy inside. That was pretty much the beginning of the end of our kitchen.

It turns out that the water line behind the refrigerator broke & needless to say we didn't know. The damage went all the way through to the crawlspace underneath. And being that this was contained to the area behind the basement, that was just another reason why we didn't realize it.

There was water damage not only several feet out from the refrigerator, but also all the way over... to the point that half of the lower kitchen cabinets had to be ripped out, & most of the floor had to be pulled up too. I may have noticed it was sort of buckling but you know it's an old house & many areas of our floors are not completely level. I honestly didn't think anything more of it.

Hard to believe it's almost two months later now & it's still not fixed, but this is what happens if you discover a serious problem right before the holidays. Good luck getting a contractor that time of year! The mold issue was taken care of right away-- we had a company come in & do that portion. But the kitchen is still missing cabinets & right now has only a temporary floor. (And a folding table in lieu of countertop.) We do have an insurance claim & it's still open, but we do not have a definitive time frame on the repairs yet.

I will say Hayden handled it pretty well, though-- when the mold remediation was in progress we had to live with a couple of pretty loud machines running all day & night. Not to mention I had a makeshift kitchen set up where the dining area is, because what was left of the real kitchen was quarantined & closed off behind a wall of plastic sheets. It felt like ET in our house.

During December at least we were busy with lots of distractions so it wasn't as bad as it could have been. The township recreation hosted their first annual tree lighting... H not only had another awesome photo opp with his Mayor friend, but he & his buddy J got to plug the two wires together to turn it on. It was really very cool.


He also did really well at the Winter Concert at school. It is amazing how far he has come with that. This year his brave new music teacher actually had him up front at one point, too! He was on one of the xylophones. He was SO confident up there-- (my goodness what a 180 from where we started--) that I actually caught him acting like he was the teacher for a second. Nothing like hearing your kid call out, "All eyes on me" in the middle of a packed gymnasium during a school concert. I am so proud I don't even care. 

And baby Arya was there, too-- she is his teacher's friend's daughter who has been spending a lot of time with the students in the MD room. It's been immeasurably wonderful for Hayden. He even held her on his lap during the Feast. And for the holidays, with the help of Arya's mom, the teacher made scrapbooks for each of the students with pictures of their time together in class. These are the amazing details of Hayden's week that no curriculum could ever compare to. Wednesday morning wishes is another one... it's something that his Aide started to do with him. I believe this began because the gym
teacher has some sort of fun Wednesday morning dance with the kids-- I forget what they call it-- but the music, etc, was getting to be too much sensory overload for H. So one of his therapists thought maybe it would be better if Hayden had a job to do instead. And that's when one of the amazing people who works with him came up with the idea of Wednesday Wishes. He hands out little pieces of paper with candy & they have messages with quotes such as "Let your smile change the world but do not let the world change your smile."

I am telling you the environment he learns in is worthy of envy. Most of the people who work directly with my son are the reason I can remain sane. 

However, that being said, Hayden is 10 1/2 now & we are definitely experiencing new challenges together. But his team of specialists outside of school are thankfully (to say the least) collaborating with his team in school. Everyone is working together to manage his treatment regimen from medications, to helping him learn coping techniques, to introducing an appropriate behavior plan, & every detail in between. As well as helping him to hopefully have as smooth a transition as possible, knowing that he will be going into middle school. This is definitely at the forefront of our minds right now.

But one of the reasons I was motivated to finally record some updates, is because of two great pieces of feedback between yesterday & today.

First, yesterday he apparently did really well when the nurse had to check his eyes, ears, & weight. I am SO proud of his compliance. And furthermore, something borderline miraculous happened yesterday. One of his medications, in tablet form, is administered around lunch time at school. It's a half of a pill hidden inside of a doughnut hole. Yesterday the piece fell out & for some reason he actually followed the nurse's prompt to eat it. Apparently he picked it up just like a crumb! To even begin to explain how incredible that is I would have to compose a whole other blog post, but my goodness it gives me such hope when he has these types of moments.

And then today there was another excellent note in the parent-teacher communication journal. Just to put this into perspective, one of the current challenging behaviors involves very colorful language when Hayden is overwhelmed (for example). But today he did really well at recess playing tag with friends... & giggling... & teasing... & NO cursing. (If you've ever seen Inside Out-- which I happened to have just finally watched recently-- that right there is one to store away as a glowing, happy long-term memory.)

So... I was putting some books back on H's bookshelf this evening, & saw my late Grandma Gert's picture on the floor where he had been playing. She used to send him cards with photos-- I guess in between their visits she just wanted him to know she was thinking of him. I used to put the cards in between the books on his shelf to help preserve them. When I picked up the photo it only made me wish that I could pick up the phone, & tell her about his great day.

Then again maybe it's just a sign that she knows.


--

Sunday, November 22, 2015

adoptiversary

They sure do like their routine & they'll let us know it. And when they're hungry they have zero patience & very big appetites. They don't really give kisses but they both love hugs & joint pressure massage-- it is almost humorously uncanny how much they both crave sensory input.

They do not like being outside in the cold-- despite enjoying that temperature when it comes to drinking water, which they both require A LOT of. Yet it's clear they both significantly prefer playing in dirt versus snow any day. They can be super stubborn.
In theory they could both use a leash when we're out & about. And inside, unfortunately they're both very good at making crumbs but neither one of them is any good at cleaning them up.

Don't even get me started on timing-- they will both inevitably need something as soon as I'm busy. And every time I come home with packages, they will both think I have something for them. I don't know where they got that idea from.


Going to the bathroom is like an accomplishment-- one of them expects a biscuit & the other one feels the need to make an announcement. It seems they both interpret getting their nails trimmed as some form of medieval punishment. They both go nuts if UPS comes to the house, or there's any sort of loud truck coming up the road. Neither one of them is fond of cats, either. Generally speaking they tend to make enough noise to shoo-away any animal in or near our yard.

Despite the fact that they both have beds,
h
alf the time they sleep elsewhere on the floor. Usually they are both eerily quiet sleepers, & I find myself checking to see that each of them is breathing. But they do not like to sit still for pictures.

--
Exactly one year ago today on November 22nd of 2014-- during what was supposed to be a mere visit to a pet rescue center-- a foster parent walked into the adoption center with a dog named Sammie. She knew we were there to meet her, but not knowing any more than that she instinctively offered the leash to Hayden.

My son, who would typically be described as nervous or stand-off-ish around most dogs, simply accepted the leash without any hesitation. 


I was so shocked I took a picture:



Next thing I know I am writing a big check, & looking down at a packet of paperwork awaiting my signature...

"I hereby elect to adopt the dog listed above...". The name written on the line said "Sammie".

Before we could even walk around the pet store to purchase food & other basic supplies, our son started to leave. With the dog. 




Fast-forward a few minutes after that & Hayden was seated next to his new companion & we were on our way home.



A year later, as I look back on those pictures, I can see when she walked how her tail was drooping much lower than it normally does. And I notice a distant look in her eyes that I would not have noticed at the time. So much less expression on her face, versus the way she looks in our eyes now.

But even then, when her foster person left the pet center before we did, she did not cry for her & try to pull Hayden towards her. So she may have been confused, but at the same time it was clear they were both ready to get to know one another.

And a year later they sure have.





Happy One Year Adoptiversary, Sammie!

Even though you weren't a puppy anymore when we got you, we hope you'll be with us for many years to come.

We love seeing your white-tipped tail waving behind you...



--

Monday, November 9, 2015

a message

Less than two weeks ago H participated in his last elementary school Halloween parade. Next year it's on to the middle school (I refuse to call it Junior High) where they do not have much celebrating in terms of holiday parties. So this year his moving guy costume was his idea (which I think I mentioned in an earlier post), because he wanted to reincorporate the hand truck from last year's UPS costume. He looked great-- Pop Z scored him a shirt from an actual moving company, he had work boots & jeans on of course, a back brace (borrowed from Pop Z), & fingerless black gloves:


After the parade around the field, I stopped inside the school to visit his class party.
Two moms approached me to say how wonderful they thought it was that I spoke with the kids about fragile x several weeks prior. One mom in particular had a true, genuine passion in her words & in her eyes. I expressed my sincere gratitude that she shared this with me, while trying my best to hold back what otherwise would have been an emotional reaction. That was three times this year including the one other mom who had emailed me. Makes me extremely grateful that both parents & students continue to be very receptive & I pray that never changes.

Generally speaking Hayden has been a bit of a handful lately. I know that any young kid is constantly growing, & developing, & changing. At Hayden's age the hormones & hyperactivity are likely doomed to increase in the next several years. Not to mention we have that upcoming transition to middle school next fall. He will be moving out of the building that has been his learning environment since 2008. It is going to be a very big deal.

We are already working on a transition plan, & all around revising his treatment plan as well. At school a behaviorist will be working with his team to help him learn self-coping techniques when he feels overwhelmed, & outside of school we are working with his developmental pediatrician to refine his medication to the most appropriate regimen for our growing boy.

But in the interim situations basically make me feel drained sometimes. When that X gets the worst of him & he is angry or hyper, or in general clearly not in control of whatever he's feeling-- it just breaks my heart. He is fully aware of these fluctuating moods & wanting so much to not feel that way. That part is obvious. This morning I don't even know what set him off-- I can always find something to blame it on if I try hard enough or force certain details into being the scapegoat if you will. Could have been that initial return to school following such a choppy week with early dismissals & days off during teacher's convention. Could have been a residual effect of a new medicine we tried over the long weekend. Could have been both or neither. But it doesn't change the fact that I can barely react to his misbehavior because then he will not follow through with his morning routine. So if he's cursing at his iPad while eating breakfast, I need to remember that at least he's eating. If I dare to interfere when he's already worked up it will not do any good. I have to keep my cool & when necessary, address the behavior later. It might even be much later in the day, but he's old enough now that he'll know & he'll remember.

This morning when it came time for him to leave I carried his backpack to the door like I always do, helped him with his shoes & jacket, & off he went.
I don't even know how I stopped myself from crawling back into bed after he finally left for school. Hands down one of the toughest aspects of my week is getting myself to the office every day. What can I say-- the relief of seeing him off when he's actually calm, will in turn make ME so much more relaxed that I am ready to rest.

The evening was somewhat better than our morning, that is, until Hayden decided he wanted to play his keyboard. He only recognizes two volumes-- either all the way up, or off. And he doesn't seem to understand that pressing the keys slower is not the same as playing quieter. We were finally about to take the plug away (much easier than attempting to grab the whole keyboard from him), when I got a message from someone at school.

I have to relay the story somewhat anonymously, but here is most of what it said:
"Mrs. Capela, I've got to tell you what a special young man you have and how he touches lives in so many ways throughout the day. Today while we were doing the recycling a lady in the office was crying. Hayden put down the bin of recyclables and took off into the office. I followed and he walked up to her and hugged her as tight as he could and said, I'm sorry about your mom! She cried even more and smiled and told Hayden what a difference that made in her day! He then carried her very heavy bag to the door for her and told her to have a better day! Needless to say he is extremely precious to all of us! Thank you for such a beautiful soul."

The scene in our house was quite tense before I saw that message. It was the end of the day, we're tired, we have the whole week ahead of us & he was just being so very loud. But I saw that message & thought about what the Dr said at our last follow-up (the one who prescribes his medication), & she brought up the fact that the people who work with Hayden sound quite tolerant. In other words, something to be conscious of before next year's transition to middle school.

Maybe they are tolerant. But they've also known him for such a long time that they're like family. They don't exactly let him get away with things, but rather they know how to help him through his day. When I looked at that message a second & third time I thought well, when Hayden's home he knows that we'll carry his (often) heavy bag to the door for him. So at least his genetics do not interfere with his ability to recognize the gestures of those who care. And equally important, he wants to reciprocate.

I am grateful for these moments because they remind me that his fragile little x chromosome is not strong enough to win all the time.

--

Monday, September 28, 2015

Dear Hayden,

I had to speak in front of your whole class last week. I was very nervous & felt my face starting to sweat, which only made me even more self conscious. Your teacher let me use one of her easels when I was presenting, but all I really wanted to do was stand behind it.

 
I smiled & tried to hide my anxiety. I had typed a rough outline of what I wanted to say & held on to that sheet of paper like it was the most important document in the world. I began reading but had to force myself to keep glancing up so the students would stay engaged.


Anyway, I know your class started learning about genes, traits, & heredity so I changed my annual fragile x discussion this year to include that. I told them I was there to chat about a genetic condition called fragile x. After I gave them a very short textbook definition about how it's not only genetic but also inherited, I then explained it more simply. I told them that fragile x is the most common form of learning challenges that can be passed from a parent to a child.

 

I gave them an example by sharing about your cousin. I said, "One of my nieces has down syndrome. That is genetic, but since there is no pattern of how it’s passed it is not inherited. Fragile x is inherited because I have the gene for it." I smiled, & in a very matter-of-fact way, told them your dad & I learned this after you were born.


I was still nervous. One of the boys sitting near the front looked bored & several of the kids had a crinkle between their eyebrows. Somehow I just kept going. I told them, "Speaking of genes— fragile x syndrome is the most common known single gene cause of autism." A girl in the back kind of tilted her head to the side & raised one brow. I continued looking at the class & said, "Scientists know that it’s not the only cause— there are other genetic causes of autism still being discovered— but so far fragile x is the most known cause."

One boy raised his hand & said, "But what is it?" I told him we were going to read a book to learn more. That's when I pulled out "Fragile X Fred" from my bag. I told your class it's a story about a little girl named Claire & her younger brother Fred. (The author, by the way, is an amazing mom & household name within our national fragile x community.)


I know I was looking down at the book almost the whole time, but I was relieved to have something for the students to focus on instead of my blushing face.

After we read the book the boy who had asked me what fragile x is, raised his hand & said, "So basically fragile x means you have a lot of energy." It was such a perfect observation I could have easily handed the goody bags & parent flyers to the teacher at that point, & left.

I was grateful for his excellent comment because it was the perfect segue into our next part of the conversation, about differences. I usually go first so they don't feel uncomfortable sharing. Previous years I've offered examples about you, such as: sometimes you clench your hands together near your face when you're excited, or sometimes you're jumpy, or sometimes your speech is more clear than other times.

I think it's important to talk about things I know they already notice. They should realize it's okay to recognize differences because it just means they're paying attention. The only thing that's not okay is to make fun of someone for it.

You know, other years when I got to that part they would follow my lead & raise their hand to share stuff that is different. Back in first grade, one boy said sometimes you get applesauce on your shirt when you're eating it. In second grade a little girl said she couldn't always understand what you're saying. And last year someone said that when you write it's more like scribble. So this year I wanted to explain to the kids that since preschool, you have been able to visually recognize that the letters 'H-a-y-d-e-n' spell "Hayden". And that you are such a strong visual learner with such an incredible memory, that even back then you began to recognize which names on the class job chart went beside which chore. I remember opening school valentines with you in kindergarten, & you would look at the name & tell me which classmate they were from.


But this year, just last week, when I was presenting my annual fragile x chat with your classmates & we got to the part about differences... something else happened.

Your classmates started raising their hands to tell me what they notice, but instead of calling out differences they were raising their hands & saying you're always smiling... & you're happy... & sometimes in gym if there's music, you dance... & that you laugh... & you always like to say something, & you're funny.

I felt my eyes well up a couple of times but we kept going.

Near the very end there were a handful of comments I may have stalled just a little bit trying to answer on the spot... mainly questions about how you learn to do different things... getting dressed, swimming, etc.  I did say that sometimes if you're not paying attention you might put a piece of clothing on backwards, but I know adults who do that too.

We concluded by talking about different things they like
— last year I asked them in groups to list what their favorite aspects of school are, & what their hobbies are at home, etc. This year I just bundled it all together & we made one big list. Working off of that, I pointed out the things that you also enjoy, & the kids were able to see just how much you all have in common. (I learned this idea from another amazing mom, & friend, & household name... who I also met on this fragile x journey.)

 

Mainly I just wanted them to know three things— I told them fxs is just something you were born with & they can't catch it— the same way everyone is born with a certain hair color & eye color. I also said that sometimes when you get overwhelmed, they may see behaviors or hear speech that is different. But lastly, at the end of the day, you like a lot of the same things as they do! (More ideas that I picked up from the excellent support of the fragile x community.)

By the end, our discussion which was supposed to be 15-20 minutes turned into nearly a half hour. And the room full of quiet, curious kids were now very enthusiastic & eager to contribute— way more hands were up than down. And even your buddy J was there visiting from the other class, because his mom had the smart idea to ask permission for him to join us. (I promise next year I will rethink talking to the whole grade... I will at least consider it.)

But I just want to tell you the very day before was when you were having a hard time at recess. And one of your other buddies at school happened to take the brunt of your verbal outburst when he was only trying to help. But you know, your peers are really great about recognizing that it's not about them. Your reactions are almost always about something else entirely— & not the person or object that you seem to be upset over. And that you do enjoy being around them, but it's very difficult for you control how your environment makes you feel sometimes... or to be able to verbally explain what's bothering you even if it's something small.

And I'm not just guessing— I will tell you how I know that they understand you. I know because that boy was one of the kids who kept talking about your likable qualities.

I have been meaning to record everything about that day. There were some other great sidebar conversations with faculty members as well. But I didn't have time to discuss my discussion (if you will), because I had to get ready for St Louis. The day after I spoke with your class I left for the biannual NFXF CSN Leadership Summit.

And you know, that's another bone I was going to pick with you... making me get on that plane when you know how much I hate to travel. I do not look forward to the idea of being locked inside of a claustrophobic tube that flies through the sky, & I don't know why some people do. Never mind all of the other features of travel which heighten my anxiety... too many to list I'd have to start another post.

However I am not going to do that because someone interrupted my thought process. It was a parent of one of your classmates who I don't even believe I have ever met. As a matter of fact, I couldn't even picture which one her son was when she mentioned his name in her email. So, I will confess, I looked up the name on social media & you pointed to which kid he was in a picture. He sure is a handsome, happy looking boy.

But anyway, here is what she wrote:


"
I just wanted to say how incredibly brave you are. Thank you for explaining fxs and giving the children a chance to ask questions. My son came home and told me all about your presentation. This was a great way for the children to understand that we are all different in our own ways. Beautiful message!"

Four homerooms in four years & that was the first time anyone ever emailed me. I tried to read it to daddy after he got home but when I got through the first sentence I was too choked up to continue. 

You've got some nerve inadvertently making mommy face many of her worst fears, head-on. Having to speak in front of people. Having to travel. Having to make new friends at this stage in my life— when I was perfectly content with the ones I had. And still am.
 

But I didn't know what else I was missing out on. I didn't know that meeting new people just because I have something in common with them, would turn into genuinely liking them. And missing them when we're apart. And building friendships that feel like family, to the point where I might not see some of them more than once a year (some even less), but when I do we honestly pick up right where we left off. 


I am still exhausted from this past week. More tired than I can remember feeling in a long time. And I am grateful for this.

I will even go so far as to say that I am grateful I experienced the 10th Annual Fragile X Mouse Races— with my fellow Summit attendees of course— hosted by the Fragile X Resource Center of Missouri. Even though I was in the same room as real, living, breathing, creepy, long pink-tailed mice... who were actually racing inside of an upright, glass-front wooden case with lanes. And not to mention the ones who had a turn on the open-top roulette table! Oh my goodness. It was so weird to me I needed a picture but couldn't build up the nerve to get close enough, so I gave my phone to a friend to do it for me.

But putting that aside it was an enormous community gathering... not only fundraising by betting on the races, but there were silent auctions, & raffles, & games, & so much more. Many high-end auction items, too-- very impressive display of contributions. The energy in the room was just exhilarating.



On that note, I wanted to thank you Hayden. Thank you for essentially daring me to put myself out there, & for making mommy a better person.

I think you have that affect on a lot of people & something tells me that will open many doors for you in life.

--


Tuesday, September 22, 2015

speaking my piece

The students began their new school year in their new classrooms barely two & a half weeks ago. The elementary school just had Back to School Night last Thursday, middle school is having theirs tonight, & both schools have Picture Day on Thursday & Friday respectively.

The kids probably still have unsharpened pencils in their desks & notebooks without any creases in the cover. Many of them are carrying backpacks that are barely broken in. But we're all getting back into the swing of things together.

So don't mind the fact that many of us raised an eyebrow over our absent Principal at last week's Back to School Night-- as for me, I innocently assumed she must have had a personal emergency. And never mind the fact that the middle school is having their BTS Night tonight, when Yom Kippur begins-- you know, the holiest day of the year on the Jewish calendar. I completely understand that our community does not have enough of a Jewish population to warrant school closings during Rosh Hashanah or Yom Kippur. But to actually schedule an event that both parents & faculty should not miss...?

And in the middle of all this I have been trying to set a date to visit H's class for our annual fragile x chat-- of course not understanding why it was taking so long for anyone to get back to me. Well the iceberg was certainly visible last night as the news about our Principal became public, & our community suddenly learned that said person was spontaneously resigning. The position was filled just over a year ago, so basically it's as if someone cued a bunch of bricks to unexpectedly crumble from the walls.

So pardon me if this feels like we are in the middle of a Twilight Zone.

I have my own suspicions just like the next person, but truthfully I don't know everything that is going on (although even if I did, I certainly wouldn't publish it here). What I do know is that the teachers & the kids-- they are the ones who are going through this & it frustrates me because they are the ones who make school great. When one is enthusiastic it's reciprocated by the other. I have said this many times before but it's an appropriate time to re-share, that when Hayden was new to his current school we had a specialist in the fx community come out & observe him. I met with his team & we were in complete agreement that it would be helpful to have input from an expert. The importance of crafting an appropriate education plan for Hayden was mutually recognized. And at the end of the day when we were saying goodbye to the psychologist from the fragile x clinic, she told me & Dan that the people who work with Hayden renewed her faith in education. I am proud to brag about that-- I don't envy our teachers but I respect them & I am one of their biggest fans.

So while everything is still fresh-- new school year, new school supplies, & unfortunately new surprises-- I hope everyone remembers that even amidst this uncertainty we ought to strive to continue to be a district to be proud of.

And when it's time to stand in front of that camera for Picture Day so close to the start of such an unsettling school year, I hope chins are up & brows are relaxed. I hope the faculty carries happy, confident expressions knowing that the parents in the community stand beside them. And I hope the students carry the same poise in front of their dedicated educators. 


If someone pulls the rug out from underneath us sometimes we have to remember it was only covering the floor. 

Just wanted to speak my peace.

--