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, July 21, 2016

the best worst thing

"I'm having a hard time understanding how you all can be so happy."

I hear ya.

I am grateful for the person who shared this sentiment in one of the many social media group pages that I belong to. Specifically, a closed "room" related to the fragile x community. 

This was shared to people who have been/ are currently now/ or will be at conference. That's about as specific as I'll get.

Me, personally... I am not happy when I have to travel in general. I am not happy that I happen to be out of work right now. I am not happy that my husband had to take time off of work this week, after having just started a new promotion. I am not happy that I am away from my son for a number of nights in a row. I am not happy that I can't be in two places at once & orchestrate Hayden's daily routine this week. 

And last but certainly not least... following numerous appointments due to a curious welt of sorts which appeared on Hayden's back a number of weeks ago, I am not happy that the day I left for the fragile x conference we received confirmation that he tested positive for one of the strains of lymes disease. Treatable? Yes. Administering three doses of medicine in Hayden every day for ten days? You might as well tell us to convince a random animal
 out in nature to sit still & smile for a portrait.

Putting all of that aside it's important to point out that everything I've shared so far during this conference(& have been tagged in), can either be described as fun or productive or both. Happy, joyful, hopeful... surrounded by people who share the same sentiments. 

How can any of us be so happy? We're here because of an inherited, genetic disability that affects our families. Heck, the first conference I went to I didn't even get through Day One before having a nervous breakdown on the phone to my sister. I remember standing in front of the hotel, curbside. Sobbing. I told her I went to a session about siblings... (a) I assumed Hayden would not be an only child & (b) in the interim maybe my sister-in-law would find some of the information useful for her (then) youngest, my niece, who was diagnosed with Down syndrome after she was born.

But you see during that sibling session there was a video of a young child talking very candidly about their brother with fragile x, & how he loved him but wished he could do more stuff together with him. He was reluctantly sad & I could not even begin to process what our options would be for the future. I remember telling my sister, "What am I supposed to do? Have three kids? How can I have only one more? That wouldn't be fair to them..." And I cried & cried because there was not any answer that seemed to be the correct answer.

How the heck can anyone go from that, to being happy.

The reality of fragile x is an ongoing mourning process & it is not easy. But there are people on the same, or very similar journey.  

As one friend reiterated, last night at the welcome reception we were reminded we all have a choice:
"we can focus on our kids' disabilities and the things they can't or will never do OR we can focus on the amazing things they can do and celebrate all their abilities. It's a choice we all get to make even though living with fragile X isn't a choice we would have made for ourselves. If you choose to live a glass half full life there are joys to be found and this conference, being around the people who walk in your shoes, is one of those joys.

If we look bafflingly happy it's because we are living that "half-full glass" life and enjoying the beautiful moments of feeling completely and fully understood and loved by the people we are sharing this time with.

It takes time to get here, it takes WORK to get here and some days are STILL "glass half-empty" days...heck, I have "the glass is shattered" days despite the time and work...but these are the people who pick me up, dust me off and refill my glass 

So, heck yeah, I'm happy here...I'm enjoying the people, feeling loved and refilling my glass for the times ahead.

I'll drink to that. 


To learn more about fragile x, the conference, & the mission of the NFXF, visit The National Fragile X Foundation
To support the NFXF during Awareness Month, or to simply view or share Hayden's annual LEK page, please click HERE


Wednesday, July 6, 2016

Cloak of Ignorance

Aaah... summer is here... the season of relaxation...

For most.

It is possible that sometimes (maybe) I might have a difficult time differentiating between "normal anxiety" (whatever that means) & "Cara anxiety".

This week has been one of those times but in this instance-- which I'll explain-- ultimately I decided to trust my anxiety. And more importantly, address it. (Just a side note, actual names have been changed in this post.)

Typical of Hayden he has been repeatedly asking me about summer program-- teacher, aide, van, van driver, transportation aide & so forth. I have of course consistently reassured him everyone's name, & shared any other information I have.
I am never in a hurry to disrupt Hayden's routine or confuse him in any way-- even temporarily. But the current transportation assignment for ESY (Extended School Year) left me quite unsettled.

Yesterday was the first day & when Hayden was picked up he confidently approached the van (the appropriate make & model I said it would be), & politely greeted the driver & transportation aide with, "Hi, I'm Hayden-" 

Quite oddly, his greeting was ignored. 

So I looked at the aide & said, "You're Gregory, correct?" And he said yes & I said, "Hi, this is Hayden." The aide sort of smiled at Hayden but didn't say anything. Then I looked at the driver & said, "You're Patrick, correct?" He said yes & I said, "Hi, this is Hayden." He didn't really respond & I didn't want Hayden to feel weird so I quickly introduced myself. Then I handed "Patrick" a piece of paper with our contact information & my cell phone number. I asked him about the route (if there were more stops on the way to school & if so, how many), & then I asked about what time Hayden would be home. The driver seemed ever-so-slightly annoyed & said that he didn't know because he only timed the route getting there but not the return. Again just wanting to ensure Hayden was not uncomfortable I looked at him, said to have a good day, & that I would be home for him. The vehicle was marked with the name of the transportation company & as they pulled away I took note of the license plate number (the latter of which might possibly be an example of Cara-anxiety). 

I knew he made it to school safely because the nurse happened to call about twenty minutes later to ask me about something. Anyway, fast-forwarding to yesterday afternoon when Hayden came home, I was surprised to see that the driver was on the phone. I do think he just got on the call as he pulled in our driveway, because it sounded like the conversation had only just begun. However, he was not speaking through a hands-free device. Worse, he didn't even turn to look at me or wave. The aide got out of the van, opened the door for Hayden, sort of helped him out of the vehicle, but didn't say anything either. No "goodbye" or "see you tomorrow". When we got in the house Hayden asked me if he was going on the van again in the morning. I reluctantly told him yes. 

This morning our routine was pretty regular. When Hayden was picked up I believe the aide may have even said hello to him-- but I am not sure. Hayden was sort of talking nervously as soon as "Gregory" got out of the passenger seat to open the door for him. I looked up & said hello. He didn't say anything back & then I looked at the driver & said, "Hi Patrick, Good Morning." He did not even acknowledge me. He had a binder in his lap which he didn't even look up from! It was open, sort of leaning against the steering wheel, & he was writing something... or marking something... 
I walked back into my house & within a half hour I called the school. I communicated to the appropriate person(s) that we simply had some concerns, so I was going to drive Hayden. I was told the transportation company would be contacted, & I followed up with a more specific email as well.(Phone calls are fine sometimes, but usually I don't want to risk someone having a selective memory when it comes to what I am communicating & how I am communicating.) 

Aside from the fact that the driver was punctual, & the vehicle seemed fine, I did not want my child spending another minute of his life in the care of those two. They might be very smart, fun, nice, tall, bearded men who just happen to be sloppily dressed-- but I wouldn't know. Because they treated me & my son like we were practically invisible.

I don't care a whole lot what a person looks like-- or if they're only a few years younger than my dad & they choose to celebrate their birthday at a restaurant seemingly named for owls & known for hiring women with large breasts. Which I may or may not have learned by possibly looking up information on social media. Because truthfully putting all that aside, I never want my son with people who do not pay attention to him. I doubt it's a simple coincidence that you can spell ignore within ignorance. 

This is not public transportation & he is just a child. Even if he didn't have special needs, & even if he was older, he is still a student. I know the transportation is outlined in his IEP & I do not make a habit of asking for services we are not going to utilize. Nor am I quick to complain (frankly I am a firm believer in catching more bees with honey). But these gentlemen left me feeling quite unsettled, & the unfortunate truth is that I am currently out of work so I am available to drive my own kid. 

Ultimately I just hope that my concern will be taken seriously & perhaps considered when contracting transportation for September. The quick reply from the district was little more than a polite acknowledgement thanking me for sharing the information, with an apology that Hayden's interaction with the transportation staff was not a more "cordial experience". And agreeing that they're glad I am available to "assist with the situation at this time".

Well, here's hoping in the fall I can return to my preferred season of relaxation.

In the meantime if you understand the importance of reciprocal friendliness, have the urge to spread awareness, & agree this is mutually beneficial for EVERYONE-- feel free to share! After all it is Fragile X Awareness Month!

Any excuse to raise awareness is a good one.


Sunday, June 12, 2016

love yourself

The weather was sunny & breezy & clear today-- what I would call a well-balanced day... a little bit windy at times, but a temperature of high 70s/ low 80s... no air conditioning needed. All four of us were outside this afternoon-- Sammie, too. I was lounging on the deck really taking it all in & for the first time in a long time, feeling optimistic about the summer because I won't be juggling sitters. 

It is not ideal that I'm not working full time right now. But in the interim Hayden & I can set our own schedule. Sometimes the relief in that balances out the stress. And as I sat on the deck with a table umbrella shading my face, my legs in the sun, & a book in my lap... I looked up at the tall trees & felt content. Dan was doing yard work, H was happily playing shed & riding his bike around, Sammie was sunbathing, & it was a lovely, calm scene. We haven't even had words with the neighbors since winter-- hate to admit that I've noticed, but after about eleven years of living across the street from the type of people who occupy a cute house which completely contradicts the personality of its owners... you tend to notice when things have been civil. It's as if there's something missing, but in a good way. Similar to being on vacation when you're out of your regular routine but it's not at all bad.

Dan paused with the lawn mowing to do some tree trimming, so he went to get his small step ladder from H's shed. Suddenly Hayden wasn't very thrilled about this & at first he was just asking for it back, but then he got a little more worked up.

One of the most successful techniques with people with fragile x syndrome is commonly referred to as side dialogue. This basically means speaking with someone else within earshot of the person that you really need to hear what you're saying. Side dialogue will often help them feel less like they're being put on the spot, or expected to follow through with something. And instead, they may think they're the one in control of making the decision to complete a task.

We noticed this before Hayden was even verbal. One day we were in the living room telling someone about a new scarf we bought for him. It was the perfect size for a toddler & happened to match a sweater & beanie hat set he already had. Next thing we knew he went & got the scarf & brought it to us. He was capable of following simple step instructions at the time, for sure, but this is also the sort of thing that he would not want to do if we were to ask him directly. It would mean he would have to stop what he was already doing, get up, go to his room, think which dresser the scarf was in, which drawer, take it out, close the drawer, & bring it to us. A lot of motor planning especially for someone who may feel like they were suddenly put on-the-spot.

Distraction techniques often work well, too. So as Hayden's behavior escalated today I knew it would become more difficult to focus on anything other than the step ladder. So I decided to pet the dog. This is such a bonus tactic now that we have Sammie-- he is especially drawn to her when one of us is petting her, because he wants to join in.

Unfortunately today it didn't work right away. And as this whole scene was occurring-- Dan on the ladder cutting branches, Hayden yelling, & me sitting on the grass petting the dog-- the lady across the street sort of walked into the picture. She was dragging some of their dead branches down the paper street beside our property line, & then throwing them into the woods behind Hayden's shed. It's not exactly as close as it sounds, & technically neither one of us owns that property, but a typical dispute between us often has something to do with the fact that they do not know how to stay on the side of the street that they live on. As I've said before, for a bunch of people who care so much about what their own property looks like, they have a complete & utter disrespect for anyone else's. 

There is not a single neighbor on the street-- past or present-- who they have not been in some sort of dispute with at one point or another. In some ways I kind of feel bad for them because I think the home they have is not the right house for them. They really enjoy gardening & yard work & various outdoor projects, but unfortunately the property they have does not really lend itself very well to such interests. And they are also the only home that is situated quite close to the neighbors on either side of them. Even the people next to them (on both sides) have more "breathing room" than they do. It's sort of like this:

trees & land << house >> house << house >> trees & land
They are the ones in bold.

Also, they can comfortably fit two cars in their driveway but they have four cars plus a boat on a trailer (plus an ATV & a little old tractor). A couple of summers ago they talked about buying some land across the street from the people next to them, to clear part of the woods & build a garage. But the area he had his eye on is privately owned & not for sale. Currently there are three drivers in that household & I remember the first winter they had that extra fourth car. When the snow was too much to keep their overflow parking in the street, they had two cars in the driveway, & two on a gravel area they built for themselves at the foot of the paper street. This is also where they keep the boat & trailer. And again, it is across the street from their house & alongside our property line. If not for the location of their excess modes of transportation, we would have a lovely view of the woods from the oversize sliders next to our dining table. Instead, the shades are almost always drawn so we don't have to look at their crap.

Anyway, that first winter they had the extra car it was particularly harsh & one of the iciest on record. I noticed that the wife & son were consistently parking on the area near the opening of the paper street, while both of the husband's cars were always in the driveway. One day I was out front shoveling the same time as their younger son (the older one moved away several years ago). He's friendly, said hello, & we were chatting for a few minutes. At one point I said, "I hate that you park all the way over there, it is so icy! Why don't you put your car in your driveway?" And he told me it's because his dad has bad knees & nearly fell the other day. I didn't want to point out that clearly his father can not drive both of his cars at the same time, so at the very least he ought to leave one of the driveway spots for his wife or son.

So, returning to the scene today, as the wife was walking down the paper street to go back home she looked at me & said something... which I could tell by her tone was nasty, but I honestly didn't hear what she said. So I told her I couldn't hear her. (In hindsight, big mistake.)

Well with that she said, "Oh, you want me to say it again?" (She emphasized the word "again".) So she repeated, "I said you have more affection for that dog than your own son." 

Just to recap the three of us were outside minding our own business, & out of nowhere she spits this pretty substantial insult at me. I told her they should move because they've overstayed their welcome & she snapped back at me-- something to the effect of-- "trust me Cara, I wish!" And maybe her wish would come true if their house was not for sale by owner for more than $100k above its value. But instead I told her to go drink another & as she was walking in her front door she yelled, "I only say what's true!" (or something along those lines), to which I yelled back that she should go get another bottle.

I do not know if she is actually an alcoholic*, but I do know she drinks & I also know she is a crazy driver. Neither of those statements are my opinion but rather fact, with plenty of evidence to support but that would take up a whole separate blog post. [*Side note: I am not downplaying the seriousness of alcoholism... it is a disease & those who overcome it are always in recovery. But if she is an alcoholic then I pray for her. Because even if she has the personality of a witch (& her boys are grown), at the end of the day she is still a mother of two.]

Just the fact that she spits this stuff out though, out of absolutely nowhere... as if she is instigating a fight? WHY. And why not use a normal insult about someone's intellect or appearance or sexual promiscuity. What the heck is up with this bad parenting slander. And it's not just the wife... they're both nasty, except her husband's style is more passive-aggressive. Although the snow removal incident from January was uncharacteristically in our faces. 

Maybe they are bored. Maybe they just have a Napoleon complex about the size of their front lawn & their driveway (which is absurd, because neither one of those factors necessarily has any bearing on a great house, even if you do live in the country). Or as someone suggested, maybe they simply miss having a dog. Their dog passed a few years ago but she was old & lived a long life. I can not say we miss her pooping on our lawn, though. Or on our deck. Or in our basement. Or the way they would constantly yell her name outside, because she was never on a line or anything. So she would wander around, & they would yell, & our son would mimic them, & he would yell, & inevitably she would poop on our lawn because she was allowed to roam free, & usually they'd pick it up with a shovel & flick it into the woods... but they'd always act like we were being ridiculous for getting mad.

But as far as me & my son are concerned I will say this. Parenting Hayden is hands-down the one thing in my life I am most confident of. I have never & probably will never doubt that I have always done the very best for him. I do not take compliments very well but I know when it comes to that aspect of my life, beyond a shadow of a doubt he & I have an unbreakable bond. He does bring out the best in me-- sometimes he also has the ability to frustrate the heck out of me & perhaps occasionally drain me of my emotional strength, albeit temporarily-- but he definitely brings out the very best in me. And vice versa. I am a strong advocate & a good mom. A very good mom.

Anything to the contrary would be as accurate as saying I do not speak English.

I can not promise that my son won't have another meltdown & that we won't be outside when one happens. He has a genetic reason for not always being in control of his behavior, but we do work with a team of specialists (& always have). They are as committed as we are to helping Hayden learn how to help himself, & to being a successful student, & ultimately a contributing member of society.

And yes, I do love my dog too. Maybe instead of using that against my parenting (?) it would be better to acknowledge that we do not allow her to defecate all over other people's lawns (tiny, manicured, or otherwise).

But there's nothing anyone can say to ever validate an insult to my role as a mom. 

Maybe that is the thing some people are jealous of.

And hopefully side dialogue is effective for them, too.  


Friday, June 10, 2016

A letter to Hayden's Superheroes

This is his last day with all of you. Hayden came to FMB in 2008 for preschool. He leaves now in 2016 headed to the middle school. It would be nearly impossible to thank you for every little thing.

So just off the top of my head...

Thank you for making sure someone wrote in the communication journal even on days when the teacher was out. The anticipation to pull it out of his backpack when he got home never lessened.

And thank you for eight years worth of those parent-teacher communication journals. I appreciate each & every glimpse into his day.

Thank you for literally carrying Hayden into the building when he was in preschool, & went through a major separation anxiety phase at drop-off.

Speaking of preschool, thank you for that video which still gives me chills & tugs at my heartstrings...

Thank you for letting me send in a small supply of applesauce & water-- for years-- for Hayden to keep in the classroom.

Thank you for finding a spot to keep extra clothing at school just in case.  

And for remembering I always put a clean (matching) top in his backpack, if he happened to need a fresh shirt during the day.

Thank you for not only saving his very first tooth when it came out, but for capturing the milestone moment:

Thank you for making sure he had a quiet place to go to when he needed downtime.

Thank you for making sure he had access to appropriate sensory equipment.

Thank you (to say the least) for all the valentine, Halloween, & everything-in-between gifts. (Oh my goodness... the volume of holiday gifts!) 

Thank you...

For easing the transition into kindergarten.

For easing the transition into the regular grade classroom settings thereafter.

For taking a walk with him outside when you sensed the fresh air would do him well.

For administering his medicine in doughnut holes. (For keeping a supply of said doughnut holes.)

For answering all of my (many) emails over the years.

For trusting me with your personal phone numbers. For the all the calls. For all the text messages.

For the regularly scheduled progress meetings. For the impromptu meetings.

For hiding me when it was risky for Hayden to know I was at the school. (Especially the time I was in the closet in the front office so he wouldn't know I was there to spy on him during concert rehearsal.)

For the various articles, brochures, & Hayden/fragile x-related materials you displayed in the front hall over the years.

For allowing me the opportunity to speak with the faculty at the beginning of each school year, during a teacher in-service day.

For welcoming me into your classrooms to speak with Hayden's peers about fragile x syndrome.

For sending home end-of-year flyers to remind everyone about Fragile X Awareness Day over the summer.

For changing the sign in the front of the school to encourage everyone to wear green to show their support on July 22nd. 

For saving & displaying Hayden's Wednesday Wishes in the front hall. 

For coming up with the idea of Wednesday Wishes.

For the book of wishes from everyone else that we will positively cherish forever.

For meeting with me at a yogurt shop, or wherever & whenever, to review his IEP with me.

For attending full-day conferences on your own time during weekends, on more than one occasion, to learn from various specialists in the fragile x community... when they happened to be presenting in NJ or NY.

For participating in consultations with fragile x specialists once at school, & several times via conference call.

For impressing them with your continued eagerness to help Hayden succeed.

For being more than okay with the fact that I practically bombarded you with materials over the years... books, binders, you name it. If it was something that could help you help Hayden, you held your hands out.

For confessing that you have his picture on your refrigerator at home.

For helping him through tough behaviors & smiling beside him during proud moments. 

For chewing minty gum because you noticed the scent calms him.

For always making him feel important & occasionally letting him be in charge. 

For reassuring us, especially during the many administrative changes over the years, & the frequent rotation of case managers, that in the end everything would be okay. And if it wasn't okay, then it was not the end.

For teaching me how to appropriately advocate for my son.

For supporting him both in & out of the classroom.

It seems silly to say thank you because it sounds too simple of a courtesy...

All we expected was that you would welcome Hayden inside & help him learn.

Pardon my language but you damn near rolled out a red carpet. 

You did not simply provide Hayden an early education. You nurtured, respected, & encouraged him. You accepted opportunity after opportunity, & continued to recognize capabilities we didn't even know he had. You were the team that stood behind him, or beside him, & looked at him with pride in your eyes. Even when he struggled... you knew he was trying, you knew he could overcome, & you knew he could always progress. 

When I picture Hayden as a preschooler I think of my blond, curly-haired, big-brown-eyed, non-verbal three year old wearing a bucket hat, high top sneakers with orthotics up to his ankles, & an absolutely enormous grin.

I feel like I snapped my fingers & he was in kindergarten. And then I blinked & he was in first grade. And before I knew it we were preparing him for the middle school transition. 

All I know is he went from that little guy to this big kid & his smile never left his face.

Because of you.

So please know when I say thank you, it is only because I do not know a more profound greeting.

Most of you have said Hayden will always have a piece of your heart, & I just wanted to tell you the feeling is mutual. I promise.


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.



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.