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, October 16, 2014

what's in your future?

So, FYI, The National Fragile X Foundation is currently promoting their Membership Drive. If you are part of the fragile x community, than I gather you're already a member of the NFXF. If you're part of the fx community but you are not currently a member of the NFXF, then you best be correcting that immediately.

But for those of you who are not actually part of the fragile x community, you may be wondering why on earth you would ever become a member of the NFXF. Even if you donate every now & then, you're probably thinking that it's not necessary to become a Member.

It's not necessary. You're right. But I don't think you realize what you're missing out on. It's not just for people who are directly, personally impacted by fragile x. I am telling you that membership is beneficial for any parent, educator, or healthcare provider... or even someone who is a friend or relative to any of the aforementioned.

The support that the NFXF offers & the knowledge they bring together is unparalleled.

One of the many membership privileges is access to webinars. This evening the NFXF hosted a discussion on the topic of medication. And it wasn't just someone presenting information, but quite literally a Q&A... with The Dr. Craig Erickson of Cincinnati Children's Hospital Medical Center. It was a discussion. This is why the NFXF refers to their webinar series as "Let's Talk". And people asked, & Dr. Erickson answered... on-the-spot.

And if you're appropriately educated on fragile x & associated disorders, then you know that the benefits of this research stretches FAR beyond our community.

I am also a registered user with the global conferencing company that the NFXF works with. And I played back portions of the webinar because as I was listening, some of Dr. Erickson's words nearly brought me to tears. And I wanted to isolate them & remember them... should I ever forget why it's so important to support the people who support us... or should I ever need to remind others...

So that is why, for the first time in weeks, I decided to log into my blogger & get it all down.

Here is some of what he said. These are just excerpts, but this is why we have reason to keep moving forward: (Remember, the context of all of this is surrounding current medication options, as there is nothing specifically indicated for the treatment of fragile x syndrome. In addition, there are clinical trials...)

"Going after one neurotransmitter may not be the end-all be-all, especially for older individuals... We hope to start doing more research in that area... But I'd be lying if I didn't say it's really complicated... But I think the future of new targeted treatment may be similar to things like oncology when multiple agents are needed to treat... That may be the direction we're going.... I think it's a hopeful direction..."

"I think the big issue with the FDA is going to be safety first. I've been at the FDA talking about fragile x new treatment development & I think they're well-meaning folks that understand the need... they understand the lack of effective treatment..."

And when asked about certain clinical trials...

"What's biologically exciting is that we're able to show moving things, that are (otherwise) dis-regulated, in the right direction..."

"There are great efforts around the country... There's a lot of us out there in academia & in industry... I want to strike a hopeful chord, we're not giving up... We may need to combine things or take a different approach, but no one's really abandoning ship... We're far from that."

He talked about working through regulatory barriers & about the importance of academic science & working together with families... & he mentioned others who have dedicated their careers to helping us... Dr. Berry-Kravis... Dr. Hagerman...

"... & others that are really trying to not completely give up & look at other ways to re-tool, because we think there may be better solutions... Whether it's better outcome measures, combined therapy, whatever it may be..."

"It's important work & we're not giving up on new targeted treatments & our door is always open for consultation... to talk with providers... from around the United States & around the world... If you're interested in our research, fine, if you're not it doesn't matter-- we're really in it to improve treatment & we're doing it for the families... & I love these opportunities..."


When is the last time you interacted with a healthcare professional who is as passionate about something as you are. I am telling you that these doctors, scientists, & specialists fall in love with our community just because. You owe it to yourself to find out why.

I believe the next webinar is on Tuesday, November 11th with Dr. Karen Riley. (You can look her up-- her credentials will leave you picking your jaw up off the floor.) The discussion will be focused around Managing Meltdowns.

Who can't relate to that.

Are you a member?





--


Thursday, September 25, 2014

week three

I am trying to make a better effort this year to schedule play dates for Hayden, while being mindful of the fact that he needs his own space after school. He likes his routine-- which usually involves quiet iPad time. I best be a certain distance away from him, even if it means I am just sitting a few feet away, as long as he is not seeing me move about too much in his peripheral vision.

So when I do try to schedule an occasional play date, what seems to work best is if I say, "What if we try to meet up with so-and-so at some point this week." I can plant the seed without placing any expectations on Hayden. Then on the morning of the play date, before he goes to school, his mood can help me gauge whether I should bring it up or play it by ear.

It's not that he has social anxiety, because he truly loves people & thrives from being around friends & family. With Hayden, his challenges have more to do with understanding the beginning & the end of a "task" (ie playdate), & about how long it's going to take. Not that it needs to be over before it even started-- he just wants to know what to expect (to a degree). He does not necessarily need a visual schedule either because I can tell him verbally, but he will trust that I am accurate.

So in his life in general, when things do not go as expected, he feels it.

Here we are at the end of the third week, of the new school year. And apparently I missed a call on my way home yesterday, which I realized about an hour after the fact.

There was a voicemail from Hayden's teacher & she said it wasn't an emergency & that everything was okay, but she wanted to tell me about something that happened. She also said something to the effect of... "in case he is talking about it when he gets home..."

So, apparently Hayden's day began with some difficulty. Shortly after arriving at school, he stopped at the nurse's office as usual (with his Aide) to receive one of his medications. Yesterday there was not only a substitute nurse, but one he did not know. To make matters worse, his special ed teacher was in training for most of the day & the person filling in for her was unfamiliar as well. And to trigger his anxiety even further, he would have gym class this particular morning-- a loud, busy, sensory-overloading environment which he has difficulty in, more often than not. (We do have strategies that have been effective... but long story short, his new Aide is slowly being brought up-to-speed...)



Anyway, speaking of said Aide, even though Hayden likes him the fact is they're still getting to know one another. So today, as things stood, anyone who Hayden already has an established relationship with was not readily available. That's life & that will happen from time to time & I get that.

But this perfect storm of anxiety-triggers continued to escalate until Hayden could take no more.... & he apparently placed his mouth around his Aide's arm. He did not bite down & there were no teeth marks. But he put his mouth around another person's arm.

Hayden's special ed teacher has known him long enough & well enough to realize that he recognizes his own actions. Hayden's own remorse would weigh on him much more than anything we could say. Disciplining him is not what this is about, because we would only be bringing attention to something he already understands. What we need to do is address the antecedents of the behavior & devise solutions-- which we have & we will continue to do.

That being said, the most we did today was have a calm side-dialogue when Hayden was within earshot. I told Dan the story in a normal speaking tone & I talked about Hayden, even though he was right there to hear us. Ultimately he just wants everyone to be proud of him & he, too, wants to be proud of himself. So I need not say much.

Again, changes are a part of life & they will happen from time to time. I hate that this incident happened & I know it's not really "Hayden". He just does not have an aggressive personality or any history of self-injurious behaviors, or anything of that nature. The teacher knows this, too, & she reiterated the aforementioned to the Principal as well. Yes it breaks my heart but if I can take away one thing from all this, it's exactly what everyone else should see, too:

That my insistence for regularly scheduled progress meetings... my letters to administrators... my presence at Board meetings (dry-eyed, or not)... my fragile x talks with staff... my fragile x talks with classmates... my distribution of Hayden's Positive Student Profile... my regular sharing of input from specialists... my dedication to maintain as much consistency for Hayden as I possibly can... is all for a reason.

That's the thing about advocacy efforts for your kid-- if you're going about it the right way, they're actually in everyone's best interest.


To paraphrase the well-known quote...In the end, everything will be okay. Until then, it's not the end.

--

Friday, September 19, 2014

the conclusion

It took me three blog posts to summarize the week we had & I thought that was the end of it. But here I am on my fourth update, because my Friday started out with an unexpected text message.

Just to rewind back to the week before Labor Day for a minute, that was when I returned home mid-vacation to go to work for a couple of days. But more importantly, I was determined to head back to Jersey so I could meet with Hayden's new third grade teacher. I literally drove home one night in the middle of the week, leaving my spouse & child at the vacation rental with the rest of my family. Not a very Cara-thing to do at all.

But there was a new hire orientation at the school that week, so I knew H's teacher would be there. When I stopped at the school the one afternoon, I also happened to run into his former Aide (of six consecutive years, who we did not know, would not be working with him this year). I spoke to her for just a moment but she mentioned that she did not know either, about Hayden's Aide. I believed her of course, & then I asked her if she would come to the fx faculty talk the following week (it would be on a teacher in-service day). She said she would be there. 


Well, you already know what that turned into, because I covered it a couple of posts ago. And you also know that she-- his former Aide-- was not there.

The next time we saw each other after that, was at the first Board of Ed meeting of the 2014-2015 school year. And again if you've been following this week's craziness, then you already know what that turned into, too.

Anyway, the text message was from her, & she said she wanted to get together to talk. Very long story short, we decided to meet at the park because I would have to bring Hayden. This way he could be busy playing & hopefully not listening to us. I acted surprised over "running into her" so he wouldn't sense anything.

One of the first things she said to me was, "My heart goes out to you-- to both of you--", meaning me & my friend who also spoke at the Board of Ed meeting. Then she sort of filled me in on a timeline from late Spring through August.

I learned a few things to say the least, some of which I can share & some of which I can not, but as we spoke a couple of previously hazy details certainly became clearer. For example, on the day that I went to the school for my fx talk with faculty, the Aides were actually dismissed early. Furthermore, supposedly the next morning when they were going over the agenda for the 2nd & final teacher in-service day, my name was on the schedule in the afternoon. But when the Principal got to that part, she said to cross it off because that had already happened. Clearly something we have to get straightened out for the future.

I am ultimately very thankful & very grateful that his former Aide took the time to clarify some things, & get a conversation going to clear the air... & I know she practically loves H like one of her own... & I am glad they still see each other during the school day.

But now that I know more, & I have a better idea of everyone's perspective... my suspicions are unfortunately confirmed that there were definitely some missed opportunities for communication.

At the end of the day, though, as I said in my text message to her after we met up: "I know there are a lot of people who look out for H & will do right by him, even if they don't have to."

To which she replied, "You know as H would say, He's the best kid EVER!"

Can't argue with that.

--

back to school night

So, I made it to Back to School night & I did not have a paper bag over my head after all.

Shortly after we arrived I actually saw the Principal & interim Superintendent speaking near the doorway of the gymnasium, so I (gulped & then) went over to them to say hello.

With a smile, I thanked the Superintendent for "putting up with me" the other evening. But quite honestly he simply looked at the Principal (who had not been at the Board of Ed meeting), pretended to wipe under one of his eyes, & said they were all almost like that. Then he asked me if she (the Principal) had a copy of "the brochure" (Hayden's Positive Student Profile). I had distributed them to the BOE members when I was finished crying. I mean speaking.

She & I answered yes at the same time, because I had already given her one when I was at the school speaking with faculty about fx. But I have to say I was SO honored that he (the Superintendent) had actually read Hayden's "brochure"!


Anyway, so after the welcome meeting the parents all dispersed to their children's classrooms. We visited Hayden's Gen Ed teacher first, & listened all about what the third graders would be up to this year. Much of the discussion revolved around areas that are far beyond Hayden's academic level, but he is still a part of the class & for Back to School Night we were too.

Then we visited with the Special Ed teacher, who has been working with Hayden since before he even transitioned out of Kindergarten. This evening was our third Back to School night since he started in that program. And I will tell you that two years ago when H was in First Grade, I was one of three parents who visited the Special Ed room on Back to School night. Then one year ago when H was in Second Grade, I was the only parent who visited the Special Ed room on Back to School night. This year... Third Grade... once again Dan & I were the sole attending parents.

I get that it's tough for many parents to orchestrate childcare coverage, in order to get to the school for events such as these. Everyone's circumstances are different & that goes without saying.


However, for those who could make it to Back to School night & don't... I think it's sad. I mean truth be told for me I am selfishly glad because it's as if I get my own bonus Parent-Teacher conference. Hey, if no one else shows up to the Special Ed classroom, then naturally we just talk about Hayden!


But the thing is, for the parents who could be there & just aren't... I think they are shortchanging their kid. Any time I am at the school I learn some of the most fantastic details about Hayden's day. Perhaps my motivation to be involved in Hayden's education is partially because I was raised the daughter of a special educator... but whether or not growing up a teacher's kid is part of it... or if it's just my friggin anxiety that drives me to maintain any sense of control that I possibly can... either way... I go, we talk, & I feel better. About everything.


--

Wednesday, September 17, 2014

paper bag

Last night was the first Board of Ed meeting of the new school year.

And last night was also the first time in my life that I practically fell to pieces, in one of the worst settings possible for that to happen (as far as I'm concerned).

As I already posted during the week that the students returned, we had a major curve ball thrown at us regarding an unexpected change in Hayden's one-on-one Aide (which I learned following a chance encounter, when I ran into someone at the grocery store who told me). I did not however hear this from the school district. No one ever communicated to us that the primary person who had been working with Hayden for six years, would not be paired with him for the 2014-2015 school year. Although she would still be there, she would not be working with Hayden (apparently she did not know this either). 

He has now been at this school for two-thirds of his life, & this particular person is one of a few who worked with him since Day One.


I also came to learn that a friend of ours who lives down the street, & has a daughter (with autism) in the same grade as Hayden, had an equally if not worse experience right around the same time. On the very first day of school, they found out that her little girl's Aide of four years was let go. In her situation it was a result of a contract termination with the agency, & affected a bunch of people including her. Someone however failed to communicate this to the people who should not have reported to work that day, so naturally they showed up at the school. Until they were pulled away from their respective positions, called to the front office, & you can imagine the rest.

So my friend sent an email to me & a bunch of other moms to encourage us to attend the BOE meeting together, to support one another & voice our concerns over the inexcusable lack of communication.

I said I would absolutely be there.

But the night before the meeting, when I called her to coordinate what each of us would say, she answered her cell from a bed in the Emergency Room.

Due to a possible reaction from a new medication, she was being held overnight for observation. But the following morning they would not discharge her because they needed to do some more testing.


Once I knew that she was ultimately going to be okay, I worked through what I would say for both of us. She said she would text me, but I knew it was incredibly unlikely that she would make it to the meeting.

That morning I put dinner in the slower cooker, in the afternoon I printed out two copies of my speech, & then exactly one hour & three minutes before the start of the BOE meeting, I got a single-word text from my friend:
"Going"

As relieved as I was on the one hand that we would be there together, I was equally anxious as evening fell. So I took a few minutes for myself as my nerves started to creep up on me & I went in the bedroom, locked the door, & collected my thoughts.

I came out with my game-face on & ready to do this. I was already gathering my keys, purse, etc, when Dan had just finished helping Hayden with his bath. After he stepped out of the bathroom with his robe on & a towel draped over his head, about a minute later he threw up. I will spare you the details but basically my exit was delayed quite a bit & Hayden had to get back in the shower. 

Needless to say (probably), I arrived at the meeting with a little extra anxiety.

However, it turns out that Hayden's Special Ed teacher was there... and... Hayden's former Aide... and... her daughter, who used to be Hayden's sitter (she was taking notes for a class assignment).

I. Was. Not. Expecting. That.

Definitely one of those moments I wished to you-know-what that I would not actually know anyone in the "audience". Too late.

It's not that they were there to support me or anything... they did not know I was going to be there, either. I hadn't exactly told anyone. The new school year just started & everything happened so fast.


Anyway, before long there was a sort of difficult & borderline emotional tone in the room. One of the first few people to speak was the mom of an older student, concerned over the location of her daughter's bus stop being within a mile of a sex offender... & no one else being on that bus stop with her.


When the meeting reached the appropriate time for my friend & I to speak, she stood up first. I followed close behind in her support & also to get ready to speak next.

She was nicely put together & you would not have known how little sleep she was functioning on. She spoke in a controlled, clear tone but it wasn't until I was right near her that I noticed she was shaking. And I could see the fresh bruise on the back of her hand from the IV. And as she retold what happened on the first day of school & I thought about what that must have been like from her daughter's perspective, I knew my emotions were beginning to surface. My friend truly held her own with just a small stumble near the end of her address.

When it was my turn to speak I got as far as stating my name, where I live, & "One day over the summer when I was at the grocery store..."

And then I lost it. It was no use to even try & look at my well thought-out speech. I was too busy alternating between wiping underneath my eyes & pressing my knuckles against my lips, & trying to subtlety chew my gum hoping that the swallowing would slow my tears.


The craziest part of all this, is that the Board members were not only receptive to what we were saying, but at one point one of the members actually said he was embarrassed over the lack of communication. And another member said he would probably feel the same way, if it were his kid. And a couple of moms who are on the Board started tossing ideas out just off-the-cuff, & other Board members were asking timing questions, & what decisions are typically made when, & who should the appropriate contact be... & literally right before our eyes, there was this impromptu conversation beginning.

They could not have been any more in agreement with us. We were practically preaching to the choir & I can honestly say this was detail number two which I. Was. Not. Expecting.


And with every word that they agreed with, I felt less & less in control of my emotions, & I could only nod to thank them.

I was prepared to be persuasive. I was prepared for them to be on the defensive. But this complete & total validation of our concerns was somehow making me feel like an emotionally wounded young child finding sudden, unexpected, overwhelming hope.


When I was able to semi- pull myself together just enough to conclude, I added that I would love to be part of any appropriate conversations moving forward. And then I handed each individual Board member a copy of Hayden's little Student Profile brochure, & indicated that my contact information was on there as well.

Then I walked over to my friend, whispered that I would be right back, & without even glancing in the direction of Hayden's teacher (because I couldn't) I scurried out of the room, around the corner, into the bathroom, & hid in a stall. Within a couple of minutes I heard my friend trailing behind so I walked out towards the sinks to clean my face.

When I cry-- I mean really cry-- the whites of my eyes turn very red & their hazel centers turn very yellow. So basically I looked in the mirror & saw a dark-haired devil staring back at me.


I asked my friend if she could go back for my purse & jacket. I knew I did not want to step foot in that room again, at least not that evening. The only thing worse than being upset, as far as I'm concerned, is being upset in front of other people. 


--

Yes I am proud that we did what we did... we were the only two to speak out... & I think not speaking up is much worse because it's almost setting a precedent that these major decisions are all okay...

But I do wish that I had been able to keep my composure. And with Back to School night upon us, at this point in time I'm feeling like I want to arrive with something over my head.

The reality is I will go & I will do my best to keep my chin up... because if I ever saw Hayden struggling with his own confidence, that's exactly what I would want him to do.


It's not going to be easy but I have only two hands & I guess only two choices-- a paper bag in one fist or confidence in the other. And when I show up at next month's Board meeting, hopefully that will communicate my choice without having to say a word.

--

annual class visit


On Monday, September 15th, as the second full week of school began, I visited Hayden's third grade class for my annual fragile x chat with the students. I usually put some sort of goody bags together-- pencils, stickers, etc-- but this year I found mini playing dough with stamper lids which I thought were great. I rolled up the parent flyer, & this year I also included a kid-friendly brochure from the NFXF. The parent flyer basically says that I visited the class to talk about fragile x, how each of us is unique & fun, & that we read a book about accepting differences & encouraging kindness. The brochures I distributed have easy-to-understand verbiage about interacting with a child with fragile x.





This year I decided to begin by reading the book, & then I explained why I was there. I talked about fragile x being something that Hayden was born with & that it's not something you can catch like a cold. I said it just means that he learns things in his own time.

I asked if they noticed anything different about Hayden but I offered an example to get the conversation going. I talked about how he scrunches his hands together sometimes when he is happy or excited. There were lots of different things that the kids noticed about him such as the chair he uses, the way he "scribble scrabbles" instead of writing, & sometimes if he's having a tough time in the morning (for example) he is happy when they see him at lunch. I explained that in his mind there is so much going on when he enters a room, because he sees & hears everything at once... or if he is switching from one activity to the next... these things can make him seem unsettled. I said that it was great that they noticed these things because it means they're paying attention... & that it's okay to notice differences as long as we do not make fun of someone for them.


I said it might be difficult sometimes to see why something is tough for him. So for example if you hurt yourself & you had a cast, it's something we could all see & we would immediately understand why you were moving differently. But when you look at Hayden, it's not so easy to see why he could be having a hard time. One little boy smiled & raised his arm to show me his cast (which I hadn't even noticed), & I thought that was great. (They totally get it...)

I asked the kids about things they like to do at home or places they like to go, & pointed out how Hayden likes most of the same things, too. (His interest in the iPad is always something they have in common.) But I also wanted to offer his perspective as well, & spoke about how certain places can make Hayden feel overwhelmed. One little girl said she loves Disney, & I said Hayden loves rides, too-- but that sort of place is tough for him because there is a lot of waiting, a lot of people, & a lot going on. One boy said he likes going to his Dad's & I said how much Hayden loves spending time with family, too. And another student said they like to go to certain games (I didn't catch the team name), but I explained how Hayden went to a professional basketball game once-- he liked it for only a little while but enjoyed it while he was there. And there were many kids who raised their hand & said something which Hayden does like just the same-- such as the park, etc.

At one point near the beginning of the conversation a little girl raised her hand to tell me that she thought Hayden was a good person. I said he thinks all of you are great, too, & he learns from you just as much as he does from the teacher.

Overall it went really well-- I am always nervous about doing this every year, but afterwords I am always glad I did.



--

Thursday, September 11, 2014

re$ervation

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

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

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


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

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

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


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

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

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


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

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


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

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

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

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

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

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


--