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, August 1, 2016

one for the books (or blog)

One time a couple of years ago I trimmed Hayden's fingernails by myself following a long, drawn out scenario like you would not believe. It was just one of those days when it was not going to happen, even with both parents assuming our usual approach of what we do to get through this. Finally when we were all emotionally drained, my devastated child with his tear-streaked pink face sat down, put his hand out in front of him, & said to me, "Please do it." He sort of sniffled his way through the whole thing but it was still amazing that it got done, with just my hands & his. When I finished he asked for his iPad & quietly retreated to his room.

Personal grooming & maintaining proper hygiene can be quite a struggle with people who have fragile x syndrome, despite how much they really want to feel good & look good. The difficulty is primarily due to sensory processing disorder & tactile defensiveness when it is time for hair cuts &/or hair styling, shaving, oral care, & nail trimming... to name a few. Dentistry aside, because I don't know anyone who loves that, but imagine trying to explain to someone like my son that most people gladly pay for someone to do their hair & nails... that going to a salon is a treat?!

Back in 2011, one of my blog posts described what it's like to trim Hayden's nails. As an analogy, I tried to illustrate a very complicated scenario of simply trying to cut a piece of paper.

To paraphrase, I said to imagine 
that you're wearing pants that are too tight. And think how your movement would be restricted if you had to sit on the floor, with your legs crossed like a pretzel. This sort of describes the uncomfortable pressure of having to safely get a large, desperately resisting child to sit somewhat still.

To understand how your hands are going to feel, make a fist with your less-dominant one while sitting on that arm.
Do this until your muscles start cramping, and your arm tingles. 

To understand the difficulty in maintaining precision, hold a piece of paper in your partially-numb less-dominant hand & try to cut the paper with a tiny pair of scissors using your other hand (the dominant one). It's going to be difficult but if the cuts are not precise then the paper will "bleed". 

But it is more than imagining trying to awkwardly cut a pretend piece of paper while your muscles are cramping. Imagine that someone is literally kicking you & pushing you while you're trying to do this. And at the same time, they are trying to pull that piece of paper from your tired, cramping, less-dominant hand. And the jerky movements from the person who is desperately trying to push & pull their way out of the situation, is also repeatedly asking you if you're done.
When I wrote that blog post back in 2011 Hayden was verbal & stringing words together, but not yet communicating in full sentences. And his articulation & pronunciation in general were still developing (as they are now as well). So the word done sounded like the word gun. And his voice would grow increasingly loud & desperate with each fingernail. "Gun? Gun? GUN? GUN??!! GUUUN??!!!!"


By now you are sweating, your muscles are throbbing, some of your extremities are numb, & you've barely survived trimming 5 fingernails but there are 5 more to go. And you have to completely flip-flop your position in order to attempt to safely control the other hand. 

In other words, time to start over again from the beginning. You can't back out now if you wanted to, because once the task begins the child will not settle until the follow-through is complete. Giving up would actually be worse than the struggle of finishing. 

Assume you have survived trimming all ten fingernails & you are now pacing to help yourself calm, while shaking your hands vigorously to regain feeling in them. And let's not forget this is a necessary task that must be repeated several times every month.

You wonder if your child will ever be desensitized enough to tolerate basic self care, let alone develop the fine motor skills to do it themselves! They are only going to continue to grow bigger & stronger. For the moment you feel hopeless & upset.

But as usual, your thoughts are interrupted by a much more important one... the one that resurfaces every time your child maintains such effort to resist a situation... because imagining what your child must be going through that they try so very hard to stop you... is not something that you want to imagine.

So like I said, one time a couple of years ago I trimmed Hayden's nails by myself. This afternoon was the second time that ever happened. But it was different & significant because it was actually quite calm.

Following me prompting him to retrieve the nail clippers from his room, he managed to sit beside me & let me trim one fingernail that was bothering him. Those are the ones that are typically the toughest because he has a sort of inner struggle with himself... wanting it to be over but unable to even start... & the anxiety of the follow-through only worsening the situation. It's tough to explain but when there is one nail that needs to be fixed, or one loose tooth, or one hair strand that is too long & needs to be cut... it is a nightmare following through with fixing whatever it is. Regardless how nonchalant we are.

So imagine my complete shock when I trimmed the one nail & then the one next to it. And then the one on the other side. And then I explained since there were only two left on that hand, we might as well finish. And we did! And then he asked for a prize-- which is fine-- & I reiterated how proud I was & said let's do the other hand & we will get a prize. We discussed where he wanted to go... what he wanted to get (a pickup truck)... & everything was going relatively well.

And then I got grossed out because of the amount of dirt under his nails... which surprisingly worked to my advantage because he thought my reaction was hilarious. So then I really played up the nausea & pretended to literally be on the verge of getting sick. 

At this point the only reason he was not keeping still was because he was laughing so hard.  

Of course me being so blind with pride next thing I know a simple trip to a local store for one $5 pickup truck turned into a pizza Play Doh set instead, plus a mini plush dog from that Pets movie, plus Nutter Butter bites, plus pita chips... & a failed attempt at sneaking in a police cruiser when I was up at the register paying.

But you know, maybe I'll allow myself to be hopeful that we can save that prize for another day.

One at a time...

--

Tuesday, July 26, 2016

Let who know about what?

What is LEK anyway? 

It stands for "Let 'Em Know"! 

Within the National Fragile X Foundation community, & far beyond, LEK is the annual theme of Fragile X Awareness Month! I like to think of it as Let Everyone Know!

Awareness-- & ultimately education-- is a tremendous part of this message. Generating resources is a crucial component, too.

If you know my son then you know that he is not shy about asking for money-- he is likely to target a man vs a woman, but either way this is a rather unique personality trait. He just really loves his bucks & without hesitation he will ask people (he knows well) for cash. But the good news is a dollar or two will suffice for his level of "greed"... which I assure you only comes from an innocent place. And thank goodness this does not carry over to strangers.

I suck at asking people for money. But it is very important to me to support the very Foundation whose efforts are unparalleled in helping a community that is near & dear to me. 


Obviously I have a personal connection to the National Fragile X Foundation. Anyone who has been paying attention regardless when they met us, but especially if you have known us since November of 2006 (our date of diagnosis), or both... also knows that this is not just about Hayden having fragile x syndrome... because fragile x is an inherited genetic condition...

Our journey is also about my late grandfather who was a brilliant man & a retired physician... & who passed away when I was about 5 months pregnant, not knowing that his Parkinson's-like symptoms were actually FXTAS... or fragile x- associated tremor/ ataxia syndrome... common in carriers, especially & more frequently in male carriers of the gene. This is the condition that snuck up on him slowly, later in life, beginning with difficulty holding utensils, & ultimately robbing him of his ability to walk.

This is about relatives who didn't understand why they were experiencing early onset of menopause... or FXPOI, which is fragile x-associated primary ovarian insufficiency... common in female carriers.

This is about the estimated one million Americans who carry the fragile x gene mutation, & who are at risk for developing one of the fragile x conditions-- including approximately one hundred thousand with fragile x syndrome.

This is about the research which will not stop at (only) supporting the community of people affected by fragile x & fragile x-associated disorders.

For example, so far fragile x is the only known single gene cause of autism. Furthermore, people with fragile x syndrome may also have seizure disorder. So without even going into further explanation, please understand these resources can ultimately help people affected by autism, or Parkinson's, or epilepsy... to name just a few.

I hope in the few minutes it has taken you to read this, you're already beginning to have a clearer picture of how broad the impact of this one gene can really be. Yes fragile x is technically considered "rare", but it is important to understand the true prevalence is greatly affected by an unknown number of people who are undiagnosed or misdiagnosed.

So where does the money go?

Well, these resources help support the mission of the NFXF in uniting the community of people affected by fragile x. This is achieved through education, emotional support, public & professional awareness, as well as research advances.

Then there are local families to think about.

Half of all funds raised during the LEK events directly assist families through the Community Support Network. The CSN is the parent volunteer program of the NFXF with Support Groups around the nation. I am Co-Leader for the New Jersey Fragile X Community Support Group. I also helped bridge communication between Atlantic Health & the NFXF, which eventually led AHS in becoming a member of the FXCRC. And ultimately, the establishment of the first fragile x clinic within the state of NJ.

The NFXF is tireless. Whether it be through educational seminars, workshops, social events, awareness opportunities, or outreach... or whether it be through offering scholarships to help families attend the Conference... the NFXF is always looking for ways to offer both immediate support while proactively advocating to help improve the future for all.

So, if you must, pretend I am a cute little charismatic 11 year old who is asking you for bucks... because the 40 year old mother & wife knows that you have way too many charities to choose from throughout the year.

But if you were in my shoes you would do anything in your power to help, too. These kids... these families... 

they're worth the effort. 


Publishing donation amounts is optional & donor names can be anonymous, too.  [<< click any of the highlighted words to support Hayden's 2016 LEK page]

--

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.

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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

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