Clouds, May 2010

Clouds, May 2010

Wednesday, January 29, 2014

peer power

So, over the weekend I spent part of my Saturday night blogging (just some of) the latest challenges along our fx journey. In this example it's mainly any activity in the (loud, over-stimulating, sensory-escalating) all-purpose room which is proving to be just too much for H. This would include gym, lunch, & recess (indoors due to the season).

At that point in time though, over the weekend, things were really looking upp . Based on the last few days we were finally having success with H's new treatment regimen & I was almost anxious for this school week to begin.

But Monday morning arrived & Hayden did not finish his breakfast & therefore he did not have both meds in him that day. When I pulled the parent-teacher journal out of his backpack after school, the Monday entry had notes such as, "lots of screaming" ... "very agitated doing work" ... "constant yelling & banging on desk" ... "didn't want to eat snack or lunch" ... "bad language" ... & even one person in particular, who is used to seeing him pretty calm because he enjoys working with her so much, commented how their session was so unusual for him. She even added, "hope everything is OK".

As if that wasn't enough to break my heart, when I calmly asked Hayden why he had such a tough time at school, he answered something along the lines of, "It's OK, I'm home now."

(I can barely type that without my eyes welling up.)

Thank the Lord on Tuesday (yesterday), he finished almost all of his breakfast. He didn't want to at first, but I encouraged him by playfully suggesting that if he goes to school with an empty belly again he is going to be cranky. (He can not know there is anything in his eggs or he would never eat them.

So basically he did go to school with one med in him & then as per regular routine the nurse gave him the second one when he got there. That's good, right?


I received a phone call because he was so upset during gym that he was making himself gag. I think the only reason I did not fly out of work & race up to the school at that moment, was because I was too overwhelmed to move. The nurse called again minutes later & reassured me that he had calmed down. I tried to control my breathing & get on with my day.

Fast-forward to after school on Tuesday, & the highlight of H's past week was that his Pop Z drove out for a surprise visit. So while he was occupied with his superhero, I went in the other room to pull the journal out of his backpack. The note said his day was actually "awesome" up until the gym incident. Furthermore, she said after he was finally calm, he actually had a great rest of the day including raising his hand to answer a question during Science.

I breathed a huge sigh of relief but grew equally panicked over the thought of him not eating his breakfast the next day. Which brings us to this morning.

So he ate most of his eggs but did not finish them... or maybe it was about half. Regardless, I warmed up what was left & packed them to take to school. The nurse would have to be present when he finished them, but I figured that was doable. Except for the fact that there happened to be a substitute nurse today-- which typically would not be an issue believe it or not, because usually if there's a sub it's our neighbor. Except the one who was there today was someone that Hayden did not know, so he did not want to finish his breakfast with her.

I did not know any of this until after school when I read the journal. But then I got to the part about lunch. The entry said, "H did awesome in lunch. Sat at a new table with his friend E. He ate, was quiet, & did great!"

(Cue the eyes welling up again)

A little while later I texted E's mom. I needed to let her know that for the first time in a long time, H had a good lunch period & I told her why. Nine minutes later she texted back & part of her message said, "Hayden was getting dropped off & E was very excited to see him & they walked in (to school) together chatting away :) E really does like H & I'm so happy E has a bud at school"

One of the many, many reasons why we are working so hard to improve H's experience during gym, lunch, or recess is because those are some of the periods when he is with his mainstream peers. There are other settings as well, but 2 out of 3 periods in that room are a daily part of his schedule. Furthermore, alongside any of his peers, Hayden is sort of somewhere in the middle... physically, mentally, & especially socially, he is on a different level than his special ed peers. Likewise, physically & mentally he is also on a very different level than his gen ed peers.

I also know that although E is a "mainstream" student he, like any kid, has his own strengths as well as his own challenges. So yes it is beyond awesome that my kid is someone E enjoys to be around & maybe even helps him with his own confidence... & it is equally awesome that E's mom is so extremely kind & accepting & encouraging... 

But I tell ya, from this mom's perspective... when I hear that H did awesome during lunch... heck, they could have told me that he had some sort of academic breakthrough today & I honestly could not have been happier.


Saturday, January 25, 2014

looking upp

In my last blog post, which was about 10 days ago, I said:

Today's post has a more 'upp' tone...
This is the term I began to use because it's what I see, when I see the word 'support'... after I really allowed myself to embrace the fx community.

The uppdate was about H's recent interest in Play-Doh (& why that is so very significant in our fx-sensory-processing-disorder world).

Although this post is completely unrelated to that, it is still pretty upp there...

So overall this school year has been rough-- one new challenge after the next. I would say that grade 2 has had a lot of number 2 because unfortunately it has been sort of shitty.

If you are a follower of our online world here, then you already know about the significant number of school staffing changes this year & how that alone is enough to throw Hayden off... & you probably remember the new transportation issues... & you are likely familiar with our on-going quest to find an appropriate treatment balance for H. This is something that is trial & error for all people with fragile x.

Well last week we had our first progress meeting of 2014. The participating team members included his Gen Ed teacher, the Special Ed teacher, the ST (although OT & PT were not available), a familiar behaviorist, & the case manager.

Lately, trending topics of concern have included gym, lunch, & recess: 2 out of 3 are part of his daily routine, & even more noteworthy, 3 out of 3 are among the various settings where he is integrated with the other children (so need I spell-out the importance of that).

As luck would have it the issues with gym are different than the issues with lunch which are different than the issues with recess... but one consistent descriptor is agitation. That is definitely a frequently used word in the parent-teacher communication journal: "H was agitated during..." or "H was agitated when..." or even the occasional "H was agitated for most of the day..." 

This breaks my heart & I am not going to pretend otherwise. However, we are working on various techniques to remedy all of the above mentioned, & I am grateful that during Thursday's progress meeting we had a productive discussion of ideas. I am typically happy if I can walk away with one positive note when we have these meetings... that's all I hope for.

Well, within the first few minutes of the meeting there were two positive notes. By the end of the meeting, a whole friggin list:

1. He volunteered & correctly answered a question during science
2. For the first time this school year he called the Gen Ed teacher by his name
3. He is now answering questions with the speech therapist 75% of the time
4. He is beginning to participate during hands-on science activities
5. He is able to respond to category questions. So for example, off the top of his head he can appropriately name 3 things that are the same color
6. He is beginning to finish sentences & social stories accurately, as they are read to him in the book
7. When offered a description (similar to 'I Spy' style), he will usually guess what the teacher is describing


But in order for you to even begin to understand the way my heart felt by Friday afternoon-- I need to recap what his week looked like:

Monday: This was Day Three (following Saturday & Sunday) of easing into the new medication regimen. But no school that day due to MLK holiday.
Tuesday: Day Four: Early dismissal due to the weather. Plus, he was definitely under-the-weather as well, with a lot of congestion. Both factors likely contributed to his agitation.
Wednesday: Day Five: His day was off-schedule again (an easy behavior trigger), because more bad weather meant school was on a delayed opening. He had a tough time during lunch & recess.
Thursday: Day Six: This was the first time in a week that he had a regular full day. They reported that he seemed a little tired but more so in the morning, & the afternoon was OK. But just a side note, the fragile x community lifted my spirits on Thursday anyway because a little something was published on the NFXF site :) (The link will open in a new window but you can check it out after... I'm almost done here...)

So anyway, that was how things stood through Day Six. I was anxious to see how we would close out the week.

Friday: Day Seven: Instead of recapping, I'll just show you what it said in his Parent-Teacher Communication Journal:

 "AWESOME time in gym & a fantastic day. Calm, but not tired. Very happy. Lots of hugs. Proud of how he did in gym."

(When I got to the part about the hugs I needed to wipe my eyes.)

There was also a P.S.:

"A little yelling in lunch, but calmed himself down & ate."

I think if I get a note next week saying that he did well in recess, too, I will probably sob altogether. But for now, like I said, this is pretty upp there.

I know next week is going to be crucial as far as continuing to track his progress & we could very well get hit with another snow storm & therefore have more disruption in routine... but if a little motivation can go a long way, just think how far this could take us.

And not for nothing he was pretty great today despite being snowed in again while Dan was sick, so therefore 1/2 of the parental committee was stationary on the couch & under a blanket all day (which does not help things for anyone).

But overall this polar-vortex-insanely-snowy winter... is definitely beginning to look upp.


Tuesday, January 14, 2014

operation Play-Doh

Today's post has a more "upp" tone...

This is the term I began to use because it's what I see, when I see the word "support"... after I really allowed myself to embrace the fx community.

So, my reason for this update is to share something that is seemingly simple but actually pretty amazing...

One of the (many) major challenges with fragile x is something called Sensory Processing Disorder. This can interfere with what our kids will wear, eat & drink, how they respond to light & sound, react to smells, textures, so on & so forth.

Hayden's earliest exposure to the very popular Play-Doh actually caused him to gag. (Jelly doughnuts had a similar effect, shaving cream was another culprit, & the list goes on.) This continued through his preschool years, whenever he was exposed to the stuff. Eventually he could tolerate Play-Doh but he never sought it out or asked for it. (I feel the same way about stuffed shells so I totally get it.)

Some time last year he started watching youtube videos of people (adults) who open & play with toys to sort of review them. (I have monitored to audit for creepiness... the youtube channels I've made shortcuts to, on his iPad, are completely innocent.) Two favorites have been Kinder brand surprise eggs & also Play-Doh molds. 

About a week ago he asked for Play-Doh one day. We have shelves with various toy bins, & one of the bins actually has Play-Doh in it, but he did not remember this. The fact that most of the Play-Doh was never opened goes to show why.

I have been in such complete awe of his new found enthusiasm that I couldn't resist documenting. Here are some of the pictures I have taken during the last couple of weeks.

When he made Diego faces...

when he said oink-oink...

when he stamped his hand... (& did not care at all)...

when he handed me a big pile of "waffles"....

& when he appropriately served one up...
& especially every time he made the dog's tongue appear...

his whole Play-Doh operation has been just as much fun for me to witness, as it has been for him to enjoy

Moments like these it is kind of nice that many of his "firsts" are so spread out. There is something to be said for never having too long a stretch of time when I miss them.


Monday, January 13, 2014

keep on trackin'

Years ago I began this blog primarily for two reasons: tracking treatment & tracking toileting. 

(Hmmm... those would have been interesting title explorations, huh? Treatment & Toileting... how about Prescriptions & Potties... or Drugs & Doo-Doo... I think my personal favorite might be Meds & Muck ....
It's probably best that I stuck with awareneXs.)

Anyway, we were working on both... we were beginning the journey to achieve an appropriate treatment plan & also accomplish appropriate self-help skills for H. In our personal life I have stayed on track, but in my published-life I have shared many tangents over the years.

Today was a clear example of how that "x" gene can get in the way, & what things might be like if it was not.

This morning Hayden was particularly agitated without any specific antecedents. He just did not want to listen to me, then he messed up his bed & had it half-stripped after I had cleaned his room, & lastly when I was helping him get dressed he repeatedly kicked me. Eventually I was able to distract & calm him by offering a simple reminder that he could wear his new shoes to school today. Thankfully, for whatever reason, that sort of snapped him out of his bad mood & ultimately he went off to school much calmer & happier.

No idea. Your guess is as good as mine.

When he arrived home we were back at square one. In the larger picture this is not particularly unusual because kids with FX, including Hayden, tend to have a tough time with transitions... even simple daily tasks that they expect... & even when they thrive on routine. It's just the "x" getting in their way.

First he had a meltdown about getting out of the school van, then he had a meltdown about coming inside the house, then he took it out on his little notebook by tearing the pages out, & ultimately the motherload of the day happened upon realizing that his notebook was now empty. Not just any notebook, but his recently-precious little green notebook that he suddenly became fixated on the other day. It is his current obsession, & therefore of vital importance.

During this time I was also trying to figure out how to get him in the bathroom, because if he did not pee soon I would have a much bigger mess than paper shreds to clean up. But reminding a big kid with special needs that his bladder is likely full, will not get through to him while he's fixated on something else. Ain't gonna happen.

What did happen next, was that he finally walked himself over to the bathroom, locked the door, & then closed it behind him.

Hayden: 1 , Mom: 0

After leaving him alone for a short while, I reminded him that when he was ready he can use the toilet (in the interim, I had unlocked the door with a credit card. Thanks for the lesson, Dad). I also reminded him that his food was ready so after he went to the bathroom, he could eat his hot dogs. I usually have hot dogs but this time I also happened to have crescent roll dough, so I made him one of his favorites... "in a blanket".

Luckily for the second time today, I was able to distract Hayden from his behaviors by talking about something else. So as I was finally steering him towards the bathroom I said I would look for a new notebook. This peaked his interest just long enough for him to finish his business.

I knew I might be pushing my luck, but I was also hoping to be able to vacuum up the paper shreds in the living room. I know better than to attempt that in front of him because the noise alone would bring that x-anger out all over again. I was trying to figure out how I could distract him with the hot dogs.

I looked at the time & realized the oven had been off for almost an hour & a half. I knew it would be luke-warm in there, at best, & therefore safe for him to remove the food himself.

Knowing full-well that he would welcome the opportunity to do such an important task by himself, I pretended like I wasn't sure he could. So I said, "I have to go in the other room & vacuum. Are you going to be OK in there by yourself? I'll just be a couple of minutes."

He already had his step stool in front of the oven (which he totally does not need), & was standing proudly with a pot holder in one hand & an oven mitt on the other. He raised one of his padded paws in the air & said, "I'll be fine, Mom!"

It was the first time in I-don't-know-how-long that I was actually able to vacuum without Hayden having a near nervous breakdown. We live in a small, ranch style home so I had a clear view of him the entire time. He was so excited to take the pan out of the oven & put it on the stove, that he started from the beginning several times-- just the pot holder & oven door part of the sequence. And in between sets he was happily scrunching (this is what we say when he clasps his hands together in excitement).

The only almost-mistake was when he was taking the pan out for the second (or third) time, & he was so proud he turned to narrate for me so therefore he was not watching what he was doing. He accidentally bumped the pan into the stove instead of placing it on it, but thankfully it was a light enough tap that nothing fell & he remained footed on his step stool.

I thought it was pretty responsible of him that he kept his hands protected when transferring the little piggies from the pan to a plate. But I corrected him by prompting him to use the small spatula instead, & then I cleaned off the now slightly greasy & crumby ovenwear.

The timing was perfect when he went to sit & eat because I had just finished vacuuming. Before I explain what happened next, let me offer a brief summary of where we stand with his treatment plan.

This school year started out much tougher than previous years, but usually the beginning on the year is like a honeymoon phase for H. We needed to determine if his ADHD meds are ready to be increased, or, if the addition of something for anxiety would help. The abridged version of why this came to be, is that this year there are a lot of new faces at the school due to staffing changes... & on top of that, there were unexpected changes with his transportation. 

We have known that the two trademark symptoms of fragile x that are most commonly treated with medication, are ADHD & anxiety.

So the first Rx we tried to help with his anxiety was in liquid form, had a bitter taste, & we were getting no where with it. We went for another appointment & the script was switched to a tablet. On the morning of November 19th I successfully added the crushed meds to Hayden's #1 most reliable meal of the day: breakfast.

Trust me, I did a careful taste test first because I was not about to compromise his most important & most successful meal!

During school while this additional medication was in his system, initially his Aide reported that he was slightly agitated. I explained this medicine was something his system needed to get used to. Our hope was to achieve consistent enough dosing to determine whether or not it would even help.

This continued for about two weeks or so, during which time the teacher & therapists reported that H was antsy, agitated, loud, uncooperative, & restless... not to mention experiencing occasional loose stools. Then on a Wednesday during the first week of December, Hayden apparently headbutted his Aide & later slapped her in the face when she was sitting was next to him trying to keep him calm.

I knew she was OK, although of course I felt awful (for both of them, really) & also from the standpoint of a mom who is constantly worried about peer acceptance... it truly broke my heart that this occurred in the Gen Ed classroom among fellow 2nd graders.

By December 10th, the doctor said to stop the anxiety meds. After that his school days were somewhat improved overall until Winter Recess began on the 20th. There were isolated reports of some yelling at the other kids, but he wasn't having the same level of difficulty as they witnessed before.

At the same time that the doctor instructed us to stop the other medication, she was writing a script for something else to try. We were told to wait a week in between.

I probably waited slightly longer than that, partly because the new medicine was not something I could sneak into his reliable morning meal. This would have to be creatively administered at night time, because it could cause drowsiness. After breakfast, the remainder of the day is not exactly consistent for Hayden in terms of his diet. I eventually tried making applesauce after dinner, but I made sure not to offer it to him... he would be entirely too suspicious. So I just left it accessible.

He ended up eating it & this worked for maybe a week but eventually Hayden was no longer in the mood for his nightly applesauce (I knew that would happen sooner or later).

But before the interruption in the applesauce, we were already getting reports of screaming & yelling at school. They also reported irritability & lack of appetite. After two days of not being able to get him to eat his applesauce anyway, I finally heard back from the doctor who said that we should stop anxiety meds #2.


We have another follow-up this week.

So, I just wanted to put this into perspective because I feel like the poor kid has been put through the ringer. I HATE putting all of these meds in his little body & I HATE that we have to keep doing this until we can help him.

I hate it.

So back to this afternoon...
There was Hayden finally sitting calmly & quietly eating his hot dogs. Granted sometimes H's bad behaviors are a result of hunger, but today it was clear-- from beginning to end-- this was something in his brain he was having trouble controlling. Therefore when he politely reminded me about the notebook, my guilt over the past couple of weeks convinced me to go hunting for a replacement. Obviously I was limited to whatever we had in the house, & all I could find was a blank journal. I knew he wanted something more mini (similar to what they use on Blues Clues), but he was actually happy because it's a hard cover journal so it looks like an important little book.

He stood up from the table & voluntarily gave me a hug. I do not need to spell-out how much these moments mean to me.

Yet when evening set in, & his behaviors fluctuated at least twice more before we could even get through our usual cleanup > bath > bedtime routine, once again my heart started aching. I do not mind having an atypical parenting track & if anything my unique perspective only helps me appreciate the sweetness inside Hayden even more...


I know is it would be really wonderful if, at 8 1/2 years old, we were only concerned with tracking things like height & homework instead.


Sunday, January 12, 2014

counting blessings

He challenges my patience.
Often tests my strength.
Occasionally confuses me.
Makes me feel like I can't keep up.
Has even caused me to question faith.

Sometimes he makes me feel stuck.

But Hayden has also enlightened me.
He has helped me see I am not weak.
He has revealed more about the human spirit than I ever would have noticed.
Hayden will teach me when I should stop for a moment.
He has showed me to never give up.

And he definitely is the one person who never fails to keep me moving.

At the end of the day even if I go to bed feeling drained, it is because of Hayden that I will wake up feeling blessed.


On Friday January 10th, after just 18 short years, a devoted & loving family in the fragile x community suddenly lost one of their greatest blessings.

None of us can change what happened, but we can support them in what will come next.

Please share the link below. And if you can, donate.


Thursday, January 2, 2014

mission possible

Hi Friends :)

I want to introduce you to someone named Cindi, & her family.

Even though my family has had some sort of involvement in the fragile x community since 2007 (following H's diagnosis which was late in 2006), it honestly took years to really embrace it.

For me, being blindsided by the discovery of this fragile x gene, only meant I wanted absolutely no participation beyond what we needed to do for Hayden. I was not ready to have anything in common with the very people who could actually empathize with us & support us.

But thanks to social media-- honestly, thank goodness-- where I could be in control of how much exposure I was comfortable with, & I could be in control of how much I wanted to participate (or not)... I was finally connected with about 100 different families. Not individual people, but households-- so person by person that number is much greater.

Just to offer perspective... on Facebook alone the average number of mutual friends I have with most people I graduated high school with, is around 100 or so. The average number of mutual friends I have with most people in the FX community-- almost double that.

Suddenly our unfamiliar circumstance did not feel so uncommon.

A couple of years ago a mom of two young men from Colorado (both with FX), posted something about seeking a new home for therapy equipment that their guys used when they were kids, but had long since outgrown. I'm talking about big stuff-- suspension equipment for sensory integration. (It's OK if you do not know what I mean... just pop it in any search engine.)

For at least 5 years now, we have had a platform swing for H (handmade by Pop Z), hanging in the middle of our living room. Since the hook is already anchored into the ceiling, I inquired about the equipment. Besides I knew if it didn't work well for H, for whatever reason, I could also donate it to the school because they too use suspension equipment.

Mrs. Cindi Rogers graciously, eagerly sent said equipment across the country to our home-- just a heartfelt donation that she would not accept anything in return for-- except gratitude.

This is just a mere glimpse into the kind, generous, supportive people that make up the Rogers Neighborhood. (If you wish, you can click here to learn more about the Rogers Family Story. This link will open in a separate window.)

They are also famous for their RV named Rocket, & every time they blast-off on a new family mission all of us look forward to following their travels. There is even a special Facebook group dedicated to their journeys, where we can enjoy frequent updates posted by Mrs. Rogers herself.

In the summer of 2013, cleverly using the neighborhood theme of their family name, as well as their family's beloved Rocket, the Rogers Neighborhood FX Family Fund was born!

This was a fund specifically created to assist families affected by fragile x, who otherwise would not have the resources to attend the International FX Conference. These conferences are hosted every other year by the National Fragile X Foundation, & it is the single largest gathering of parents, researchers, clinicians, educators, psychologists & other experts in any place at any time.

As far as the fragile x community is concerned, it's like the World Series & Superbowl all rolled into one event. I mean Advocacy Day is up there too, but that's more like our chance to put on our army uniforms (so-to-speak)... straighten our backs... raise our chins... show 'em just how strong we really are... & march tall on Capitol to truly have our voices heard.
researchers, clinicians, educators, psychologists and parents. - See more at:

researchers, clinicians, educators, psychologists and parents. - See more at:
The International Conference is more of a mutual participation... it's our opportunity to listen, to talk, to support, & to be supported. But it is also a substantial investment to participate in such a worthwhile opportunity. As a matter of fact I will swallow my pride right now, come straight out & admit that both conferences I have been to so far... never would have happened without assistance from my family. And there have been plenty of years when we have simply had to pass on a lot of things... not just Advocacy Day or an International Conference, but even smaller out-of-state events.

All of these opportunities are out there... all year long... but making sure people can take advantage of them is a different story.

So needless-to-say the amazing, incredible Rogers Family is personally going above & beyond to help ensure that more families are able to experience this unparallelled Conference. So far, they have raised enough funds to offer 10 scholarships to 10 families! This is incredibly impressive... but need I explain how there are countless more who can benefit from this.

Once again, here is the link to donate & help!

I would personally opt for the perfectly-priced $20 famous t-shirt if I were you-- (H of course already has his own--) but non-t-shirt-wearers can donate, too! In any amount of your choice-- it's very easy! :)

Even if you personally are not in a position to donate, simply sharing the link is contributing as well...

On behalf of the entire fragile x neighborhood, thank you in advance for helping us move

For more information about fragile x syndrome & fragile x- associated disorders, please visit The National Fragile X Foundation