the anti-work ethic

This morning Hayden had zero interest in cooperating with the P.T. (again). Then we went to his speech appointment, and due to his behavior it was cut short (again). At least this time he didn't slap me across the face.

A few weeks ago I was so exhausted one afternoon, that I told H I would pay him if he took a nap. It only worked for a couple of minutes. 

But all of a sudden this afternoon he grabbed a blanket and pillow, made himself a bed on the living room floor, and then he asked me for money. I gave him a dollar but he didn't sleep.



Quite a 180 from this morning-- the change in mood never ceases to amaze me when no one is placing any demands on him.

His babysitter was here this afternoon so I could run some errands. It is POURING out. After she left he wanted to play on the deck with my umbrella. He looked at me through the door, and said, "Cheese me!"

I said, "What?" And he said, "Camwa!"
(Yes, of course, camera. Cheese Me... pretty funny.)

So I used my phone:

I am obviously much more phased by his behavior this morning than he is.

good news and bad news

I always like to absorb the bad news, then the good news.

So, the bad news is that Hayden peed on the bathroom floor right before his bath. I honestly don't think he had any idea what happened. He looked down because he felt his leg was wet, and his face was actually confused. 

I didn't know either, at first, and I asked, "What is that?" Then I realized. So as he was stepping into the tub I looked at him and asked, "Did you just pee on the floor? Why didn't you sit on the toilet? It's right there. That's what it's there for! You know that!" 

He looked at me with this face I can't quite explain-- it was a cross between I have absolutely no idea and it's a little funny, isn't it? But I'm sorry. 

I am guessing he did not even feel he had to go, or he wouldn't have taken off his clothes in the first place. That was rather frustrating because it sort of feels like a setback, even though he has yet to release anything into the toilet. At least this summer he has been sitting on it a lot.

Well the good news, that I am trying to enjoy, is a conversation we had earlier this evening (after bath).

I was prompting him to go to bed, and he was not cooperating. So I consciously suppressed my own impatience, went to my room, got on the bed, and said, "then let's sleep here." 


(He has never slept in our bed because he has zero interest and I certainly never encouraged it-- I know what a pain in the neck it is when kids get used to that routine!) 


"I get the left side," I shouted. I heard him following me, and he laughed as he tried to pull himself on Dan's side.

After he shook the sheets for a couple of minutes and released some of his hyper energy, he sort of rolled into me with his face in the pillow and mumbled, "Best friend!"


I said, "Yes, we'll always be best friends." Then he put his hands behind his head and I tried to follow his ADD as he talked about a million different subjects in a matter of minutes. Poppa Z, boat trailer, Dad, golf, Kayla (babysitter), Mongo (her car), Fluff (cousin Flora), and family. Dan is "Gad" and I'm "Mom". And my name is "Cawa". And I'm Gad's "wife". And apparently, Gad is my wife, too. I corrected him and said, "husband". Hayden repeated, "hubband!"

I said, who's my Dad? He said, "Poppa Z!" I said, "Poppa Z is your..." 
He said, "Gampa!" I said, "That's right! And you have two grandpas. Who is your other grandpa?" He correctly answered, "Al!"

When we finished our conversation, I finally got him to follow me to his room.

As we were walking, he told me that was fun and he had the best time in there.

Kids with FX are difficult... they are quite difficult. And sometimes draining. But they sure are easy to love.

brusha brusha brusha

We went to the dentist yesterday.

The experience is a lot like cutting Hayden's nails, only worse. Similar to blood being drawn, but not as bad as an x-ray.
(Following previous blog posts, this will put it in accurate perspective.)

We were running late because we're (still) borrowing Poppa Z's car and had to drop it off for a tire fix and an oil change. So right before we left the house, I told Dan to wait for the car at the tire place and I'd take H to his appointment.

By the time we made it a mile and half to the stop sign at the first intersection, I had a moment of clarity (as Dan put it-- but I'd say I must have been suffering from temporary insanity). I followed Dan to the tire place so we could all go to the appointment together.

We told H about the appointment the night before, and reminded him earlier that morning. He kept telling us they were closed :(

When we pulled in the parking lot he started crying a little bit. By the time we got inside the dentist's office he was asking if we were "gun". I said, "yes, we're almost done."

He did not want to get off of my lap when the dentist met us in the examine room. Before he even made it to the patient chair, breakfast came back up.

(Our appointment reminder card for his next visit in February specifies "NO FOOD" on it, in capitol letters. And it's scheduled for an hour earlier so we can put off breakfast more easily.)

With the dentist, hygienist, two parents, half a box of tissues, and one trashed blankie, we made it through the appointment. (Sounds a lot like the tooth scene at Flora's birthday party, right? That was way easier.)

Even though H left the dentist looking like he did that morning when he and Dan returned from their weekly diner breakfast last Sunday (?) without having eaten any breakfast, he acknowledged the staff on his way out.

"Bye guys," he said in a raspy voice to anyone who was listening.

He got in the elevator clutching his "prize" bag and two toys from their drawer of tricks-- a little Sponge Bob figurine and a stretchy frog.

How many days until February?

I really hope Hayden knows that he's not actually being punished when these things happen, and they're just a part of life. 

trip down paperwork lane

I am finally organizing the pounds and pounds of paperwork, pertaining to Hayden, which have accumulated over the years.
Most of them have been in a drawer, but they're finally going in date order in binders.

I came across the written request for his evaluation for Special Ed services, through the public school. I sent the letter to the Child Study Team in February 2008, as he was going to age-out of Early Intervention in June. 


I added an addendum and also attached a picture. I just wanted to post them because it's fascinating how much he has grown. At the same time although he has come such a long way... in some respects he has barely changed at all:

weird day

I know I already blogged this morning because of the comic-relief thread in the closed Fragile X fb group, but I was holding off on posting something else until I knew whether or not it was a fluke. 

This morning Hayden wanted to sit on the toilet. And once he did, I noticed that he had clearly just started going to the bathroom before his diaper came off. I was exuberant. 

Nothing more came out after several minutes of sitting there, but I praised him as if it all happened on purpose. I knew he was not done going yet, and I was so hopeful that whenever he decided to finish he would go back to the bathroom. 

He ended up sitting on the toilet two more times today, but the 2nd time he sat he immediately asked for a prize so maybe he was just in the mood for a present. Nothing ever went in the toilet. The third time he sat for a couple minutes, but really it was a sly segue into something else. He stood up and removed the rest of his clothes, and stepped into the tub. It was two hours before his usual bathtime, but he was suddenly in the mood to be in the water (there's a shocker).

Well, in between these toilet attempts he was a bit of a nightmare today. I don't know what was going on with him, but it started with physical therapy this morning.

He was very happy to see her and ran outside to greet the P.T. before she even made it to the front door. The first 30 minutes or so, he attended beautifully. Rode the scooter, did a puzzle while bouncing on the ball, and something else which escapes me but he did well. 

But then he just got angry out of nowhere. It's one thing when Hayden just doesn't want to pay attention anymore and he'll go and do something else. But this was a borderline meltdown with no antecedent. He was fine when she left.

Later, we were off to speech. He gave phenomenal effort for the first 15-20 minutes, and then it was all downhill. I could tell how hard he was trying to say the vowel correctly that she kept prompting him to repeat... and I think after enough tries he just had it. I tried to encourage him and tell him how proud I was, and she just wanted one more vowel out of him before they played with the next toy. But I guess it was too little too late. He was done. 

Fast-forward several hours and after the third toilet attempt and then the early bath, he suddenly wouldn't let me put a diaper on him. I mean I literally had to wrestle with him. It was absurd. 

He wasn't constipated by the way, he did finish going to the bathroom earlier in the day. His appetite was pretty good, he drank plenty of water today, and he was certainly active. Too active.

So frustrating. 

Well, after all this I was equally fascinated and confused with his 180-degree turnaround after the PJs were on. He got a candle out of the pantry and wanted to do happy birthday. So we decided it was the chef's birthday. And then Hayden went and got his keyboard (and pretended) to play while I sang. Then he said "camma" (camera) and reached for my phone. I said, "OK, let's take pictures!" So we did:

About an hour or so later when we were in his bed as per our new bedtime routine, he brought a two-piece cube puzzle with him. He had been playing with it earlier. When you match both sides of the two cubes correctly, it will make the sound of that image. It's all transportation, so among the six sides there is a boat, an ambulance, a train, a firetruck, an airplane, and a motorcycle.

There we were on his bed in the near-dark, and he was unbelievably attentive. And patient. He would take one cube, find the image he wanted, and just kept turning the other one over and over in his hand, until he found the other half. And then he would say it: "me want pane!" (airplane) or "me hear boat" or "am-buh-ens!" (ambulance) ... a 3-syllable attempt! And I love that the latter was followed by "hospal!" I said, "Yes, the ambulance goes to the hospital!" And he said, "me want." I said, "no, you don't want to go in there. They drive people who got hurt." He asked how and I told him they put the person on a stretcher and drive them there. "How works?" he said.
"They strap them to the stretcher so they don't fall off."
Then he asked, "Hospal bed?"
"Yes, it's like a hospital bed."

He has an ambulance with a little stretcher and an EMT guy, so he knows. It was nice to hear him say it though and actually have a conversation.

Anyway, so I don't know why all of the Jekyll and Hyde business today but it would be really nice if Hyde hid himself more often.

You know Fragile X when...

There is always a new 'trend' on fb, and last week it was "You know you're from [     ] when..." pages. So for example, "You know you're from NJ when you've never pumped your own gas"

There must be a page started for everyone's hometown by now. So someone made a joke and posted in one of the closed fragile x fb groups "You know Fragile X when..." 

It would take a separate blog to post all of the great ones. Here's an excerpt from my favorite one posted by a parent:

"...if the Principal of your local grammar school calls you at work to come pick up your (just turned) three year-old son from school. In a very shaky voice, she explained to me that he had pulled the fire alarm outside of his classroom sending the Police and Fire Departments (including all the volunteer fire fighters from their "real" jobs since we live in a small, rural town) to the school which had been evacuated. The Principal called my precious little trouble maker to her office, sat him in a chair and tried to explain about the dangers of doing such a thing. However, he kept laughing and couldn't stop. To make it even worse he still had balance issues so when he would get laughing that hard, he would end up tipping over in the chair and she'd have to get up and "right" him. Hence she called me so that, "I could take care of the situation." Not to say that my kid had anything to do with it, but the Principal retired the following year..."

Here's my contribution:

You know fragile X when...

input is an action, not information

sensory makes u think of issues vs an aromatic experience

repeats does not remind you of music or sitcoms
brushing is for skin, not hair
if you look up CGG on wiki you're confused why there's nothing about DNA
someone says swing and you think of therapy vs a playground
you know the word proprioceptive
Mouse is a person (and not a Disney character)
you know someone forgot to make the next size disposable swim diaper
you're aware that O.T. has  absolutely nothing to do with occupational in a job sense
summertime is not synonymous with vacation. It's a pain in the ass.
you've developed a fear of waiting
you're essentially certified in special ed even though you don't have the Degree to show for it

and so it goes with fragile x

For every 'wow' day, there is a low day.

Hayden was clearly exhausted last night, yet he had a tough time getting settled for bed. We have our usual wind-down routine, and I also tried laying with him for a few minutes.

Eventually, after walking in and out of his room, he went to sleep about an hour or so past his typical bed time.

He slept a good amount-- at least ten hours. Sometimes it's closer to 11 but he woke up fine. 

He even sat on the toilet while Dan was getting ready to bring him to the diner for their weekly Sunday morning breakfast. 

And then, without warning, Hayden's switch was flipped. No antecedent, no signal-- just I'm suddenly not cooperating.

After much back and forth to get him to leave the house in the first place (partially motivated by being able to take Poppa Z's car), they finally left for breakfast.

I think they were gone about fifteen minutes, when I heard an upset, frustrated Hayden trying to unlock the front door.

I opened it and his face was red, dripping with tears, and snot-streaked.
 
I asked Dan what happened but I didn't really need to. When they got to the diner he couldn't get Hayden out the car.

Who knows.