Clouds, May 2010

Clouds, May 2010

Tuesday, May 31, 2011

all aboard the potty train

Now that everyone's on board-- babysitter, school, daycare... here was the feedback from today:

Hayden's classroom teacher said, "Hayden had one of those WOW days. He completely cooperated with toileting, although he was already wet. We will create a time schedule....I noticed he was calmer than usual. Way to go Hayden with the bathroom!" Signed by Mrs. L with a car and a boat sticker. 

From the daycare, "Hayden had a great day today. We will definitely keep working with him with the bathroom, and I know he will get more and more comfortable with it."

He's trying. That's what I want to hear. Unfortunately the calmness he displayed today, I believe, is largely due to the fact that he's not feeling well. So I let him win this evening when I prompted him to sit on the toilet and he didn't want to...I allowed him a 'get-out-of-bathroom-free' card. 

But as soon as he starts feeling better it's back to the chart! 

Monday, May 30, 2011

new day, same status

At least he seems excited about his new underwear-- holding them up to check them out. He's not interested in putting a pair on yet. 
But I'm just happy he's not using them as a slingshot.

Sunday, May 29, 2011

number two stinks

Pain is often at its worst on Day Two. 
If you have surgery, the meds are always more effective Day One and you're entirely too out-of-it to care. Day Two hurts like a M@#^&R!

Or if you injure yourself...yes, Day Two you will wake up feeling everything. 
If you're sick, or if you're a woman and on your cycle...Day Two. The worst. 

Hayden's potty training is following the same trend. 

Saturday, May 28, 2011

new motivators

My third and final blog of Day One, of bathroom business

The on/off practice from this afternoon gave us an idea. Maybe it was also the hard, cool seat that was making him nervous. We relieved ourselves of house arrest to treat him to dinner, and a trip to the store. We picked out a nice, cushion-ey toilet seat complete with chrome hinges. 

He was excited that we bought it, but didn't want to sit on it yet.

I left my boys at home and went to the grocery store to buy more ammo, while acknowledging H's new fondness of the color "geen". I filled the cart with specific snacks (both Hayden-faves and drink-encouraging) such as animal cookies, tea biscuits, cheese-flavored crackers, ranch-flavored crackers, big, shiny glazed doughnuts, a new box of personal wipes with a green character on them (meant for post-toilet use, vs baby wipes), and a green refillable water bottle. Oh, and Hebrew National hot dogs.

I saw the window shade was down in his room when I got home, which meant he was already in bed. I'm sure he heard my truck and within ten seconds of pulling in the driveway I saw the shade go up (and heard him squealing).

He bolted out of his room to greet me, and was very excited to hear I had new prizes for him tomorrow. When I mentioned about his own new container of wipes he wanted so much to see them, that he started to pull his pajama shorts down while he was running to the bathroom.

Now, he was very happy to sit on the new seat. The wipes were the cherry (or doughnut hole) on top.

So we concluded Day One with him sitting, and legitimately happy about it. Nothing in the bowl yet but he's following his potty chart, he knows all the steps already, and these little bribes (I mean rewards) are clearly helping.

Tomorrow, I buy size 6 underwear. Someone once gave us the idea of putting them inside the pull-up so in the event of an accident, he'll feel it and hopefully prompt him to sit on the (cushioned) throne.

shall we have this potty dance?

afternoon attempt...

He was eager this time, and he wanted to get on and off by himself. 

When he did that once but didn't actually go, we said that was a good job and decided it was still doughnut-worthy. 

But then he wanted to get on the toilet again. So there he was holding on to the sides with locked elbows and white knuckles... and wearing a very nervous smile. 

We promised him he could let go and relax and he would not fall in. 

We offered a car magazine, but he prefered Dan's rap. Accompanied with a non-traditional potty dance. 

Finally after three or four times of getting on and off the toilet, which he narrated to point out that he was doing it "myself" (uh my heart is melting) his posture became more natural. 

He was clapping and said, "you proud?" I choked up for a second but I guess the look on my face said enough as he leaned forward to hug me. (And thankfully didn't pee on me as everything was still exposed)

He got cookies on top of doughnuts :) 


Today's UPP is Pull-Up.

(you're about to witness a different mood...)
we knew to expect toileting delays but sometimes expected things, are still unexpected. 

Initially he didn't mind sitting on it at all. As a matter of fact, he was proud to. Then the novelty of the whole thing wore off, because nothing ever happened.

So we've decided to celebrate this hot, humid memorial weekend by spending time in the coolest room in the house.

Our intention was to begin as soon as he woke up, but that was at about half past this-is-entirely-too-early-for-me-to-function-yet. 
Hayden pulled himself onto our bed (it's a little high for him), and his bright-eyed face smiled at mine, "hi mom! moooom....wake?" He lay down next to me and pulled the sheet up. "Fun! Best party!" (hanging out in a bed is always a slumber party...)

But he tolerated most of a potty training video...better than we did. Ugh... that narrator... I wanted to throw a roll of toilet paper at her face. Her exaggerated smiles and overly expressive eyes and eyebrows were more irritating than a diaper rash.

So we started after breakfast instead, and following last night's pep talk it seemed okay. He understood that sitting on the toilet = doughnut hole (a.k.a. prize). I would recap what we'd do, and he'd finish the sentence for me. 

He happily sat on the toilet and we showed him his chart, and he seemd to be having fun, and even though ultimately nothing happened... he completed all the steps. So we moved those magnets over to the sunny "done" side of the tree. 

But the next attempt, after having drank enough water to give us a chance, we didn't get far enough to move any magnets over to the sunny side. But he flushed to signal he was done. I tried to explain we only do that if there is something in there to flush.

Same with the time after that-- no magnets to move. But he flushed.

Finally following lunch he sat, but for only a few seconds and then clearly communicated that he was done. Guess how? 

It's only the first half of Day One of boot camp. Trying to stay focused on the sunny side of the tree. 

Tuesday, May 24, 2011


I didn't want anything to do with Fragile X when I learned about it. 

When H was diagnosed, we had to schedule our sit-down chat with the pediatric neurologist. It was late-November, just after my 31st birthday. 

Both my parents and Dan's parents came to the house to babysit Hayden that night-- not that he needed all four of them (although some days it does take a village). But they knew we'd come home with information to share. 

During our appointment, we let the neuro do all the talking. I am pretty sure I only asked one question-- if this diagnosis would affect Hayden's physical health. The neuro answered with something along the lines of, "there is no increase in hospitalization associated with Fragile X Syndrome." 

Not how I would have worded it, but O.K. 

I don't remember how long we were there, but I do remember just sitting and taking notes. And I remember not being able to answer any of Dan's questions during the (thankfully short) drive home. Though, they may have been rhetorical. 

Once we got home I felt surprisingly anxious and relieved to stand up, and read my notes. (Thankfully Hayden was already asleep-- he's very perceptive of people's reactions.) It was as if those words were literally being projected off of me, so I wouldn't have to sit there and absorb all of the overwhelming emotions associated with it. 

I barely looked up. I couldn't get the words off of me, I mean out of me, fast enough. (But in my mind, I was passing the information so I would not have to hold onto it.)

Anytime that Dan & I were in the presence of other people with children with special needs, or even people who are specifically part of the FX community, instead of feeling relieved we were a little bit uncomfortable. We almost didn't want to have something in common with them.

I know that sounds like a horrible admission, but it stemmed from the significance of the diagnosis. It was unthinkable. 

And I write that in the past tense, because now things are different. We can see beyond the fog and we are living the most privileged life of being Hayden's parents. And we love that we can share our blessedness and our challenges with people who can actually empathize.

I want to thank the community of people who are affected by Fragile X Syndrome and I can't even think of a single word in the English language that encompasses the gratitude + understanding (without judgement) + kinship + positivity + hope... all in one.

I love the word "support" now. I see it, and I see the word "UP". With two p's... UPP!

Embracing the support will lift your spirits and raise your own personal awareness in a way that many other people don't even realize they're missing out on. 

Hayden never ceases to amaze us with his effortless smile, and charismatic personality. 

The only thing that overwhelms me the surprise in knowing that the very person I was so concerned with supporting, is the one who has done just that FOR ME.

Hayden is, and will always be, my UPP.

Monday, May 23, 2011


Most of the time when H wakes up in the morning he stays in bed and I can hear him tabbling (talk + babble), or playing with toys. Usually he will wait until one of us comes in to get him, before he leaves his room. This was always the routine when he was too young to just get up on his own, so I suppose he's just used to it.

This morning I slowly opened the door like I usually do, and he was on his bed with his toy laptop. He looked at me and smiled. Most days he just wakes up perfectly happy. (He may have my genes, but there are some slight differences in our personalities.) 

I sat on the floor beside his bed and I was looking at him through the net of the side bumper (which he doesn't really need, but he likes having it there). He laughed and tabbled something, but I definitely heard "net". I said, "you know the word net? good talking." And I sort of brushed my hand from his forehead up into his hair and messed it up a little. He was laughing but he said to me, "stop mom! 'noying!" 

I smiled and said, "annoying? Who taught you that?!" Nearly laughing he said, "Pop Z". I said, "Poppa Z taught you the word annoying?" And I started tickling his neck and he was laughing and I said, "is this annoying?" And he was still laughing... and then when he had enough, he held up his hand and said, "Stop mom. Back bed. Need rest." He put his head down on his pillow, pulled the blanket up, and then two seconds later sat up again. He exclaimed, "Me wake!" 

I am going to be late for work today because I could not stop myself from blogging about this. This new back and forth ability to have conversations with us literally feels like a daily blessing. 

Hayden's 5th birthday came and went last year and he was still barely speaking. But a couple of months later, for whatever reason, his language just started pouring out of him. Even though it was still gradual, suddenly he was making a lot of progress in a very short amount of time. That September his teachers were just floored. 

I know H...he'll do everything when he's ready. And not before. No rush. 

(Except to get to work...)

Thursday, May 19, 2011

Chart This.

I started more than one journal at different times in Hayden's life...never kept up with any of them. The first one was when he was a baby, and I realized after x amount of months (no pun intended) that I had little to report on. Only because every day was so unbelievably similar to the one before. 

When his teeth started coming in and his smile became even more attention-grabbing, I wrote about that. I kept counting the teeth and repeated how much we loved him and how proud we were of him. I would also go back and forth to that book about what to expect during the first year, but I got bored with it. Not annoyed that my kid wasn't doing those things, and surprisingly not afraid either, but just bored. Because I could not relate so I didn't feel like reading about whatever most kids do, by whatever age. 

Gradually the journal writing stopped. I remember when my husband and I were at a friend's wedding a number of years ago, and Hayden was approximately 9 months old at the time. It was around then that our confusion over Hayden's slow development began. The doctors kept telling us he was only developmentally delayed due to his large size-- because his height was off-the-charts (he has evened-out now). 

By the way, at the time, I SO LOVE that my grandma told me the doctor should get a new chart. 

Anyway, I remember one of our friends whispering to me during the reception, when the groom was dancing with his mom... the groom being significantly taller than his mom...and she smiled and said something along the lines of, "that's you and Hayden one day." I couldn't envision it. I was not upset, but I couldn't envision it for some reason. So, nine months was the age our suspicions began, but they were ultimately not confirmed until Hayden was 17 months old, in November of 2006. 

We're almost 5 years into the diagnosis now (4 1/2 to be exact). H will be 6 next month, and transitioning into Kindergarten next year. That is one reason why I am getting back into writing about him, to track his developments and progress, and personal growth.

Also because September will likely mark another milestone... the beginning of medication. Our decision of which regimen, is pending whether or not H will be part of a clinical trial. Last month we traveled out to California to the M.I.N.D. Institute (something I had anxiety about for more than a year). The miracle-working specialists we met with, got the ball rolling for us. 

There was nothing "easy" about that trip, but that being said...there are still no words for how much H impressed us. Airport...airplane...long ass flight...another airport...strange place...time difference...long ass car ride...hotel...appointments...another strange place...unfamiliar people...another hotel...airport...etc...

As out-of-sorts as he was, he was unbelievable. He just gets through something when he needs to...he just does. (Frankly, I wish some of that would rub off on me.) I remember when he was 2, and one day the physical therapist commented that even though he could see just how exhausted Hayden was, clearly Hayden's motivation was taking over. He was 'wowed' over Hayden's determination to make it the entire length of the kitchen, on a scooter board, using only his arms to navigate.  

I guess his height doesn't have to be the only thing off the chart.

Tuesday, May 17, 2011


Hayden will be six years old next month, and he ate part of an apple today.

He has done this before, maybe just a couple of times. In his life.

He likes applesauce, but biting into an apple is a whole different skill. You don't realize that you have to know where to bite (for example not the top or the bottom, but rather the side), how much of a bite is the right size for what you can chew, and that the skin may take a little bit more chewing than the fruit it protects. 

This is a challenge for H to put together. He knows it's OK to bite into one, he has seen how we eat an apple, and he wants to do the same. Just the fact that he will now open his mouth wide enough to position the apple to bite into it-- despite the fact that his teeth aren't even piercing the skin-- is an accomplishment. 

Like the first time he successfully used a straw-- he actually drew liquid up through a straw and into his mouth. I remember the exact moment. He was so surprised he ciggled (cough + giggle). We could tell him a million times over, narrate what we are showing him, yet sometimes there are words that his brain doesn't successfully interpret. Or there's a lack of communication between his mind and his body (sometimes both). But one day, we were having a meal at a restaurant (another accomplishment), and he was watching me drink my water with a straw. He has seen me do this literally countless times. For whatever reason, that day at that moment, he wanted to try. And he got it.

So I have had these apples in a little basket in the center of the table for a number of days now. Tonight while my husband and I were having dinner (H already ate), he joined us at the table and displayed interest towards the apples. 

He is developing expressive language now, and asked me to cut one.  Then he said "self", but I told him I would cut it for him. And sure enough, while playing with the apple and sort of exploring it, he actually consumed some. 

My husband and I know better than to praise him too soon, or he will feel like he is being put on the spot and an expectation being placed on him. So we will exchange glances, knowing the other one notices the same thing, and when we're sure H is done... then we will repeatedly tell him what a great job he did eating that apple. 

This is when our proud, happy, child will clap while flashing us that beaming smile of his.