the good, the bad, the ugly, & the BETTER

Well, the good news is that H sat on the toilet again over the weekend. Nothing happened, but he enjoyed his reward for sitting there (insert me rolling my eyes):

No, the bad news is not that nothing happened. The bad news was Monday following Thanksgiving Break. The teacher's entry in the morning journal said he did well-- they started the letter "Ss" and read Growing Vegetable Soup. The afternoon teacher had a different perspective. One of a loud child who was particularly hyperaroused that afternoon, and seemed to be having difficulty. His chart was the ugly part which indicated that he was screaming when the children were doing a holiday craft, so he had to be removed from the kindergarten room.

It makes me sad-- for him, for them, for me. We are now less than 18 hours away from the meeting I requested last month. I am at least thankful that Tuesday and Wednesday reports were BETTER.

(Except for the nurse alerting me that he's missing his kindergarten immunizations and he has two weeks to get them or ----)

But yesterday the kindergarten teacher actually noted:
"Hayden WOWED us today with cooperative behavior / 360 from yesterday"


Then today, both of the Aides sent home some more positivity:
"Hayden had a great morning! He is so excited to show you the story he has in his folder because there is money on page 7."
"Hayden had another great day!"

Lord willing the best is yet to come tomorrow. I'll report on the meeting either way...

his first gobble

Since becoming a mom, I could have sworn this is the first time my birthday was going to fall on Thanksgiving. But I stand corrected... the year H was born apparently my birthday was on Thanksgiving.

Anyway, this is a picture of him that day...eating baby food sweet potatoes :-D

I just showed this to Hayden. If I had ANY clue as to the reaction he was about to have, I really would have video taped it!

I consider myself a pretty decent writer, and I can barely put into words how amazed he is with himself. He had his hand on his cheek because he was literally in awe. He pointed to his eyes and said they were cute, he pointed to the food on his face and laughed, and he said, "me borned?" I said, "Yes! This was taken the year you were born... your first Thanksgiving."

I am so angry I did not record that!

kindergarteners feasting

Dan was there & took these pics with his cell phone, but you get the idea...

(Apparently the children had fun remembering H's Halloween costume, & said they were eating at Cafe Hayden!)

sleepover

the kindergarten classroom mascot accompanied Hayden home this afternoon, for another sleepover:
(the blurry, brown thing over his face)

(and yes, that's a cash reward for helping me record in Ted E. Bear's journal)
   ^^     ^^
See below:

"Ted E helped me pile wood outside after school. I had a bath and then we watched house shows."

this is my 89th post; on November 18th, of 2011 (for the record)

I caught a whiff that H must've gone to the bathroom, and since it was near his bedtime routine anyway I started the bath before changing him.

While the tub filled with warm water and Mr.Bubble, I "cleaned" him up. There was only a little bit but he often goes in stages, and especially a favorite time is after bath (insert emoticon for rolling eyes if there is one).

After his hair and body were washed, and I listened to repeated pleading, I finally turned the shower on for him. Our washer & dryer are in that bathroom, and a laundry load had just finished. I started putting the clean clothes in the dryer while he practically narrated everything that was going on in the shower. Then I thought I smelled something.

I peek over and sure enough (I know it's gross, bear with me) there's a brown ball in the center of the tub. He was "upstream" from the accident so following a tic-like inspection I lifted him out there, wrapped a towel around him and plopped him on the toilet, not leaving him much chance to have a choice in the matter.

I removed & disposed of the object in the tub, grabbed the bleach from the laundry closet and starting pouring it on the porcelain.

Next thing I know, H stands up & starts wiping his butt with the bath towel. I quickly put it aside-- didn't even look to see if he was successful or not, because I didn't want to know. Then I put his bathrobe back on, but flipped the back up to his shoulders so he could sit down on the toilet again... neatly (for lack of a better word).

Once all the clean laundry was in the dryer and the washer was re-loaded with the newest dirty laundry (on hottest water/ double rinse cycle) plus extra detergent, and the bathtub was rid of any and all DNA... I tried to investigate the status of the toilet situation.

What began in his diaper and continued in the shower had finally, successfully (and properly!) concluded on the toilet.

He saw how happy and proud that I was, and immediately asked, "give me money?" I told him he was welcome to whatever was in my purse.

Once he was officially clean and I helped him in his PJs, he very patiently waited in his armchair. I looked in my wallet and realized I only had two dollars so I had to borrow another three from his bank. (A while ago we had to remove his bank from his room because he would not stop trying to open it.)

I sat down in front of him on the floor and I handed him the first dollar. "This is for sitting on the toilet," I began.
He smiled at the bill in his hand. I handed him the second dollar and said, "This is for pooping in the toilet."
He smiled at the two bills in his hands. I handed him the third dollar and repeated, "This is for sitting on the toilet."
He smiled at the three bills in his hands. I handed him the fourth dollar and repeated, "This is for pooping in the toilet."
He smiled at the four bills in his hands. I handed him the fifth dollar and repeated, "This is for sitting on the toilet."

He beamed at the five bills he was holding. I placed my hands on his knees and reiterated how proud I was. My eyes began to well up, and with that Hayden said, "oh, mooom," stood up and wrapped his arms around me.

My face was soaked.

I gave him permission to go tell Gad the good news (asleep from having worked night-shift), so together we went in the bedroom. Hayden was so anxious he was stuttering a little bit, but he got out, "poop" and "koi-let". I confirmed the story for Dan and Hayden received another beautiful congratulations.

We left Gad so he could go back to hibernating, went in the other room and sat down to watch some TV before bedtime. At one point H said something about his "coo gollars". He stood up and repeated "need coo gollars" or "where's coo gollars"...I can't recall exactly how he phrased it.

I looked at him and sure enough he had three singles in his hands.

My face was soaked again.

I tip-toed back in the bear cave, blinded by my own tears, only guided through the darkness by a mere glow from my make-shift cell phone flashlight.

There on the floor beside the bed, I found two dollars.

I don't think I could have been any more proud of him this evening unless he wrote this 89th blog post himself.

and in other news today:

The logo has launched!

Same phenomenal organization; fantastic new logo:

visit www.fragilex.org to see more!

I also wanted to share an encouraging note from one of H's teachers. This was in the communication journal today. She wrote,
"Oh my G-d what a great day. He sat at my table without his Rifton chair for 20 minutes."

She's supposed to be sending me a pic.
Pretty fantastic to say the least.

stay tuned

I've been sick for a few days now with flu-like symptoms, and I was unable to go to work yesterday. This morning I originally sat in front of the computer to send another out-of-office email as I am still not feeling well.

I attempted to log-on to corporate webmail, and the page kept getting stuck trying to load. I was frustrated and opened a new tab while I waited for it to be un-hung up. I opened facebook, and at the top of my newsfeed I see a blog post from an aquaintance. Our parents are friends, but outside of facebook-land I don't personally know her very well.

In recent months I feel like I've gotten to know her, as she has been documenting a horrific experience.  A short while after she got engaged, she was diagnosed with a very rare form of cancer. Seven months (or so) later, after completing various cycles of the most aggressive treatments available (and somehow having the strength to get married in between), she recently posted that she would have a follow up scan.

This morning the blogpost at the top of my fb newsfeed reads, "The Final Installment." I knew the news before I read the rest...

Her family has the biggest miracle of all to celebrate this holiday season as she finally received the news her scan was clear.

I read the blog entry like a tragic novel with a twist to a fairytale ending. As if I grew to know the characters over these months, and could share in their joy. I felt so relieved for her that she could write, "The End".

Suddenly I started crying and I could not stop. Again, I do not know her very well and although I have known her since childhood I did not grow up spending time with her. Was I just feeling empathetic as a fellow mom in her mid 30's? Was it the flu? Was I relieved for my parents dear friends?

As I stared at her blog entry on my screen, I started thinking of my own blog. I can't scroll when I'm on a new entry page, but without looking back I am pretty certain my last post was of Hayden getting a haircut and tolerating it really well. Just like a big boy. Only followed by wanting to take a shower. Just like a young guy.

And then it hit me out of nowhere and I sobbed. Although I am not comparing my son's genetic disorder to life-threatening cancer, and I am certainly not comparing his challenged life to someone whose life could have ended... still, as the person who gave him life, I feel sad that it's indefinitely compromised.

Lord willing he will be toilet trained one day. Lord willing there will at least be effective enough treatments for FXS that all of their lives can actually be comparable to that of a typical person. And if there's truly a miracle, there will be a cure.

But until then, the fact is I'll have a lot to write about.

some days

He got in the chair all by himself, and didn't even need to sit on Dan's lap when he had his haircut today. (And it was a different person cutting it-- totally out of routine!)
Then he wanted a shower before bed, not a bath.

Some days he is very grown up.

it's not a party until someone breaks

I was relatively nervous about yesterday. The Halloween parade at the school, originally scheduled for Monday ON Halloween, was canceled (as was school) due to the odd October snowstorm.

I remember when Hayden woke up that morning and I gently explained about the school not having heat because the power went out, and the parade would be another day. I was surprised when he cried and felt awful. Finally when I told him he would see Fluff later at Grandma and Poppy's house, he calmed down. Hayden's other grandma also stopped by that afternoon to see him in his costume before we left, so that too helped cheer him up.

The school was closed for two days, and on the third day he actually cheered in excitement when he was getting on the bus. But still we had an out-of-routine week, and since I couldn't prepare him ahead of time with the snowstorm and it's effect being unplanned...we just had to take each day as it came.

By Friday I was genuinely concerned between his recent difficult behaviors and this week being such a different one, that he might act out and not want to join his peers. The excitement of the day could certainly lead to hyperarousal and further complicate things.

The parade part would probably be fine because he generally enjoys being outside. As expected he walked at an appropriate pace around the field with the other kids, and held his Aide's hand the entire time. He was ecstatic to see his cheering fans (Grandma, Grandpa, Mom & Dad).

Once inside the classroom for the party portion of the afternoon, he was a little loud at times and often wanted to do his own thing. They had centers set up so each one was a different activity... crafts, snack, story time, ring toss, etc. He ate snack at the craft center while I assembled his bat complete with his own handprints as wings, and a Halloween picture frame. When he started to fidget I gave him my camera. Taking pictures occupied him for a few more minutes, and then his aide let him borrow the tail of her costume for some added amusement.

Once out of his rifton chair for story time on the carpeted area, he was not exactly in the mood to attend anymore. His K teacher has a small hand drum that she uses when it's time for the kids to switch centers. Hayden was fixated on it and that was that.

I noticed the classroom mom eyeing him every so often. (It was difficult to tell if it was a glance of disapproval, or if that's just what her face looks like.) So when she was setting up for the next activity while the children were having story time, I went over to introduce myself and ask where I should put the goodie bags.

Without even looking up at me she said, "Hi, how are you?" More as a statement not a question. She is certainly a task-oriented classroom mom, but doesn't smile much. I showed her where the shopping bag of goodie bags were, and asked how or when she wanted me to distribute them. She started to offer an over-analytical answer...something about "if the kids are doing this, and then they have those, maybe we should do it this way, but wait until after that, for these..."
No idea. She lost me. At one point she even added that she hopes the holiday party isn't like this.

Mid-conversation a mom standing to my left said, "I'm just in charge of the ring toss-- that's all I know!" When the classroom mom was finished speaking, I was left having no clue what I should do with the goodie bags.

Between the kindergarten orientations and a couple of these events that parents have been invited for in the K classroom, most of them are now aware which kid is Hayden and that he's a little different. They definitely know I'm his mom.

So yesterday when one of the other moms came up to me because she noticed the 'Our Fragile X World' brochure (with our picture) still posted outside the front office... she completely improved my perspective.

She recognized us, read it, and truly could not say enough nice things about it. She was smiling and teary-eyed. I can barely put
into words how that warmed my heart.

So I think in December when it's time for the holiday party, let the class mom arrive all wound up. As for me, I am going to arrive with a completely different attitude.

sorry streak

Ever since Hayden apologized to me last month, so heartfelt and sincere but more importantly for the first time in his life when it was absolutely appropriate, he now likes to throw out "sorrys" all the time.
Almost like someone who deliberately bumps into you, and then says excuse me.

For example Hayden will take my cup, usually without asking and even when he has his own water, have a sip and then dump out whatever is left. He'll walk away and as casually as I'd expect to hear a thank you, he'll say, "sorry mom".

Today he decided to throw half the contents of our living room over the Dutch door to the kitchen. The door is typical in height and size, except it does not have a top half for some reason.

Anyway, I do not know the order in which everything made it over (I was occupied in the restroom at the time), but here are some of the items that were on the floor (and explained the noises I thought I heard):
his life-size lion cub stuffed animal
two chairs from his kid table
a toy drill
a piece of wood
couch cushions
a throw blanket
and when I arrived at the scene, he was picking up a small area rug.

When he saw my face he started repeating, "sorry mom" in the same tone that he would say, "hi mom".

I told him that unless he says it like he means it, and shows me he's sorry by helping me to clean up, it's not an acceptable apology (that is, in language he understood). He did not like this very much.

I don't believe he was seeking any kind of sensory input when this happened, because he was perfectly calm when I told him I was going to the bathroom. There was a movie on, but he seemed more engrossed in playing with his trucks. There was no identifiable antecedent.

Ultimately I was unable to get him to help me clean the mess up, and out of frustration I (jokingly) muttered something about calling a taxi to come get him. Next thing I know he's got a computer case that he uses as a briefcase when he's playing "go to work", and he shoves a sweatshirt and undershirt in there and possibly a dirty pair of socks (in other words, things he had taken off and found on the floor).

So either he called my bluff, or he really wanted to leave. Hopefully not the latter, but something tells me he would have said sorry on his way out the door.

a new fxs awareness day

On May 2, 2009, Leo Messi dedicated two goals to Fragile X Syndrome at the Santiago Bernabeu Stadium of Madrid.
This November will mark the first nationally recognized FX Awareness Day in Europe!