Clouds, May 2010

Clouds, May 2010

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.