Clouds, May 2010

Clouds, May 2010

Wednesday, August 31, 2011


Today was Hayden's last official weekly daycare attendance. Moving forward, he may have some visits when school has scheduled closings, and he may attend again next summer... but he has officially aged-out of the regular program. 

It was surreal picking him up today. I was thinking about the fact that he was still drinking from a bottle when he started going there, and had severe separation anxiety for months where we'd both be crying at drop-off. There were also a couple of Early Intervention therapists who sometimes worked with him at the daycare Center. I even remember that the teachers in the toddler room had a picture of Poppa Z on the wall to make H feel more comfortable. :)

He arrived with DD doughnuts this afternoon to celebrate the monumental occasion with the other kids. I don't know how much he fully understood that it was his last weekly visit. He also didn't agree that we should capture the moment:
Well, I tried.

Though he did get a very sweet parting note:

"Dear Hayden,

It has been such a joy being one of your teachers @ the Center & I am so proud of the things you've learned & the growth you've demonstrated. You are such a warm, smiling, wonderful presence at our Center. I wish you the best of luck in your school year, and look forward to your visits!"

They sent home some of his (what they call) Observation Slips as well. Here are some highlights of recent happenings:

  • Hayden painted a card & picture for Father's Day. As he took each different paint, he would say the colors & then carried around the finished product saying, "for Dad!"
  • Hayden was in the play kitchen with 3 classmates. He set out plates for each friend & put food on each & said, "eat!"
  • Hayden was playing on the climber on the playground. He saw that several children were making a train near the slide, & he figured out how to join in.
  • Hayden was taking his shoes & socks off, & putting them back on!
  • Hayden examined new stuffed animals in the classroom, picked one up, & correctly said, "chicken!"
  • One of Hayden's classmates was asking for the teacher to pass a bowl to her. Hayden heard & got the bowl for the friend.
  • Hayden was playing in the art area. He took paper & markers & said, "to write"
  • Hayden wanted to sit and watch cars pass, but did not want to sit on the wet ground. He got 3 buckets, lined them up, & used them as a seat.
  • Hayden recognized his parents car pulling into the parking lot. He then walked to the door. 
  • Hayden was getting hot outside. He took a drink of water & poured the remainder on his hands. He said, "this feels good!"
  • Hayden helped friends clean up block area. He would pick up blocks, and helped put them on the shelf with similar blocks.
  • Hayden was taking cards in & out of alphabet pockets. He would identify some of the pictures on the cards.

    Really great stuff...
    Understanding direction... demonstrating imagination... interactive play... good motor skills... correct identification... responding to needs of others... knowing what comes next/ routine recognition... showing self-help skills... teamwork...

    Not at all surprising, but impressive at the same time.

Tuesday, August 30, 2011

the weekend in review

Unless you live under a rock, you know the east coast was hit by hurripane-in-my-[beep] Irene over the weekend.

After a day of raining buckets, our basement flooded with nearly six inches of water. The next morning, I was at least thankful we still had power.

So I began to make Hayden his daily spinach and cheese omelet, with a side of waffle (or french toast). Soon enough the toaster went ding, but the eggs were still cooking. Then we lost power.

Having no other choice, I left the eggs on the stove in the still-hot pan, and begged them to finish cooking. It wasn't looking promising because I still had to flip them. But thanks to our electric stove (that I may have insulted once or twice), the burners take too long to cool so therefore the omelet finished cooking. Although if it was a gas stove it wouldn't have been an issue during a power outage in the first place. 

While Hayden was eating his breakfast, I proactively filled one of the bathtubs with water (per my father's suggestion). We do have public water as opposed to well water, but if the outage was throughout the whole area it was possible they'd have to shutdown the pump(s).

At some point when Dan was outside trying to get whatever water he could out of the basement, an enormous tree fell in our neighbors yard. The sudden and LOUD noise scared the four-letter-word out of Dan and Hayden, but thankfully the 'ol forest timber just missed our fence.

A few hours later we still had water, but then a conservation was put in effect by order of the township. I instinctively went to check on the bathtub, and discovered our drain is apparently literal even when closed.

With that, we decided to get out of the house and find lunch for Hayden.

We drove to three different places before we found one open for lunch, and while we were there the restaurant lost power. By that night, I was packing up me & H to head to my parents house.

We drove an hour, got off the exit, and couldn't turn where we needed to because there was a fire. So we waited for my Dad to meet us and lead me along back roads-- which included driving through a flood zone.

We were at my parents house maybe a couple of hours when a text came in from Dan that the power was back on.

So the following morning we sat in highway traffic for what seemed like a day, to journey home. When you live in Jersey I think you become an unofficial authority on traffic. Aside from car accidents, you've got everything from absurd rain-traffic, to annoying sun glare, to frustrating rubber-necking, or some road that is inexcusably forever under construction.

But the road-closure traffic is arguably the worst kind. The ripple effect is insane.

Why am I blogging about this?

Well, between the yo-yo of waiting and rushing and all the out-of-routineness mixed in, I must brag about the way Hayden handled himself through all of these circumstances.

Rarely did his smile leave his face, and overall he honestly just went with the flow. There were some isolated meltdowns, but when it was all said and done the only memorable natural disaster I witnessed was named Irene.

Thursday, August 25, 2011

he said, HE SAID!

Dan called me at work today and Hayden got on the phone for a minute. I nearly understood every single word, which typically I can only do so in person. It was beautiful-- miraculous even. He is six years old and I have never spoken with him on the phone before.

He said, "Hi Mom!" Then he asked me something along the lines of, "You work?" I said, "Yes, I'm at work. What are you doing?" 

He told me about the lake, and the boat, and the trailer...
He was in fact going there with Dan to help my Dad get the boat out of the water, so we could bring it up to a different lake tomorrow.

Before we hung up, he finished, "Call me! Love me!" (sometimes we get our pronouns confused) 
And then, "Kex me!" (text me)
Followed by, "Goodbye!"
(both syllables) :)

It was undoubtedly a favorite conversation of my life.

Wednesday, August 24, 2011

we were THIS close

After bath and PJs, H and I watched a little bit of the Yogi Bear movie because it happened to be on TV (and we're both sick of Nick Jr).

I got up to go to the bathroom and H followed me. Before I even sat down to pee, he had his pajama bottoms around his ankles and was starting to remove the diaper. I told him to hang on so I could go, and he did, so immediately after I encouraged him to have his turn.

I suppose because we were in the masterbath he said, "mines". (He sometimes adds an "s" to "mine"... because "yours and mines". Logical, actually.) I said, "you can use this bathroom, too!"

I waited a couple of minutes as he sort of lingered there, with the twig and berries exposed, and his pants around his ankles. Then I decided I should really go and get a diaper to put on him before I regret it.

When I came back all of 30 seconds later, he looked at me and grabbed his nose and said, "stinks! pee!"  Sure enough there's a small puddle on the bathroom floor...RIGHT in front of the toilet.

I am angry that I went to get that diaper! We may have had our first real breakthrough...

I'll never know whether or not he actually felt that he had to go, or if it was a coincidence. I'll never know whether or not he was trying to stand and pee like his Dad, or if the position of the puddle was a coincidence.

But I do know... we were THIS close!

Monday, August 22, 2011

follow the Hayden

Hayden reminds me of the Family Circus comic strip sometimes.

This morning he woke up with the roosters and orchestrated a concert with his keyboard and drum-pad that was definitely loud enough to hear at the nearest farm.

After breakfast he was building a campsite. He stomped around the house in his pajamas toting
his new school backpack (filled with all the food from his kitchen set plus two fortune cookies), switched from his Indiana Jones hat to his pirate hat and then back to Indiana, slipped on his waterproof sandals, and told us that he was going camping. He got on the phone to invite his grandparents, accidentally tripped walking from the living room into the kitchen, and then announced, "campsite not fun". 

After Dan the Bear showed up and really disrupted things, Hayden took his pajamas off to hint that he wanted to get dressed.

A little while later he was off with Dan to buy new sneakers. They came home and had lunch, and then Hayden's babysitter Kayla arrived so Dan could do yard work. I got home shortly after he and Kayla washed Mongo (her car). I had some work to do so I lost track of whatever ideas he came up with over the next hour.

Then we played tractor and he unknowingly mimicked Goldilocks by parking his tot-sized John Deere in three neighbor's driveways, until he finally brought it back to ours. Then it was the wagon's turn. Of course we had to shlep it down the hill to fetch the mail, and lugging him back up was fun.

Then Hayden wanted to play mailman at the vacant house next door.

When we finally got him inside for our fajita dinner, he fully participated and wrapped his chicken in half of a soft tortilla with a pinch of shredded cheese. (He did actually bite the "samich" which was quite amazing.)

After dinner he fought Gad with his inflatable Buzz & Woody boxing gloves. Then he got a bath. Following his own grooming, it was now his lion's turn. He gave it a haircut, and then grabbed a leash (bungee cord) to take it for a walk on the deck. Then he said his goodbyes to Lion, set it free, and locked it out of the house by closing the front door on its face. (Although before bedtime, Lion was invited back inside.)

I'm sure I'm leaving something out, but this is a glimpse of Hayden's dotted-line trail today.

All this without a single pit stop of course. 

Any day, now... PLEASE!

Saturday, August 20, 2011

september preview

Hayden had kindergarten orientation last week. He was shy and a little confused when we arrived-- the parents of the kids in the AM kindergarten session were just finishing up their school visit. The group was congregated out front and the teacher was speaking with them. Their kids were taking a practice ride on the bus-- a part of orientation that I was not aware of, but I do think is very smart.

Hayden stayed behind one of the brick columns in the front of the school... watching the group from the side. The kids came back from their bus ride, and everyone began to disperse. Hayden was still standing beside me, behind the column. Then he started to walk off-- he definitely looked like he knew where he was going, but his mother sure didn't.

Then I saw what he saw: Mrs. L. She was his heaven-sent preschool teacher for 3 years, and would now be teaching one of the kindergarten classes. They have a strong bond and the mutual trust between them is very sweet. He will spend his mornings in a special ed room across the hall (the former preschool classroom), and his afternoons with Mrs. L.

We went inside the school to see the kindergarten room, and when prompted he found his name on the wall of balloon cut-outs. And then, his name tag on the table. He also has a coat hook and cubby reserved. (I hope they have some place discreet to hide his pull-ups.)

He was curious and played with a lot of stuff in the classroom-- leaving a little bit more of a trail than some of the other kids-- but the day went well for the most part. He enjoyed the practice bus ride on the big bus, although his door-to-door transportation will be on a smaller one or a school van. I believe there are 14 kids in his class--and three total kindergarten sessions this year. One in the morning and two in the afternoon. He has at least one friend from preschool in each K class so they're sort of dispersed, but some activities will be together. 

They each have an apple necklace with their name on it to wear the first week of school, and their bus number will be on the back. I am guessing one day during the first week he will also want to wear his new green T-shirt that one of his Aides just painted for him. His babysitter (her daughter) brought it with her yesterday-- it has his name across the top and a cute car underneath. She often arrives with some sort of little toy-- that family just adores him :)
And needless-to-say the feeling is mutual!

He has certainly grown a lot this summer-- developmentally and physically (despite the disappointing progress with toileting). I noticed that he now says "thank you mom" instead of just "thanks", and he is asking a lot of smart questions, and I would say some of his fine motor has improved. For example, putting on a shirt and just yesterday morning he opened up a cup of applesauce by himself. It is not easy to peel that foil off-- I was impressed! When I asked him how he opened it, he said, "with my hands".

Pretty amazing. Here's to hoping that his upcoming school year follows a similar pattern of progress.

Wednesday, August 17, 2011


Still organizing the pounds of Hayden paperwork, and came across some cards today.

Some sentiments that definitely stand out:

"I know [Hayden] will continue to impress everyone with his fun sense of humor and enjoyment of others."    
-an original member of the CST, upon her departure 

"Enjoy the ESY [summer] program. I will miss you! Can't wait to have you back in September."
-preschool teacher

"Your endearing smile and happiness brighten my thoughts."
-preschool teacher

"Working with Hayden has been a joy and I know how much he is loved by his parents!"
-ESY teacher

"It has been such a great year for you. Thinking of all you have achieved puts a smile on my face."
-speech therapist

"It's a pleasure having you in preschool."
-speech therapist

"It's a pleasure working with Hayden! His smiles and hugs make my day!"
-his morning Aide

"I look forward to working with Hayden next year! His smiles make it easy to come to work every day!"
-his morning Aide

"Everyday Hayden makes me smile and I am so happy to be a part of his school life and for him to be a part of mine."
-his afternoon Aide

"I really enjoyed having you in class and I looked forward to your beautiful smile every day."
-his afternoon Aide 

"I have had a wonderful time being a part of Hayden's school experience. Every day he brought something new to class and to my life. He truly is a shining star!
-his afternoon Aide

"I am so happy to be a part of Hayden's day. He truly is a treasure."
-his afternoon Aide

"I just love the picture of Hayden which I promptly put on my fridge. He truly brightens up my days!"
-a cafeteria Aide 

"It has been my pleasure to work with Hayden."
-classroom Aide

to name a few.

Notice a trend? :)

Monday, August 15, 2011

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.

Sunday, August 14, 2011

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. 

Friday, August 12, 2011

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:

Monday, August 8, 2011

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

Sunday, August 7, 2011

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.

Saturday, August 6, 2011

an event 6 years in the making

This is a collage of what we did this afternoon... GO HAYDEN!

I know what you're thinking... why are images on a movie screen, and a kid passed out in his seat worthy of celebration? The one where he's standing there (seemingly) without a shred of enthusiasm isn't helping either.

Yes, but he lasted through a movie. An entire movie. That is the WOW part. I don't care if his eyes were closed for 20 or 30 minutes of it, and if he still looked half-asleep by the time we left the theater... because my ADHD child actually lasted through an entire movie. (I know, I said that already.)

We have waited nearly a month and a half now for everyone else to go run and see Cars2. We intended to take him on a beautiful day to increase any chance of the theater being pretty empty, but already the show times are extremely limited-- as well as theaters where it's playing.

So even though it was an overcast day when we left for the movie, with a likely chance of rain, we decided it was time to give it a try. I almost changed my mind because he went to the bathroom twice this morning and new outings are generally discouraged on a 'poop-day', but following a third bm after lunch I figured there was nothing left in him to come out.

The movie started late-- or, maybe it's been so long since Dan and I have seen a movie that we forgot about the gap between the ticket-time (2:50) and the actual start-time (3:15ish).

Before the lights dimmed we had to repeatedly remind him it was starting soon, as he kept getting out of his seat. It was a blessing in disguise that we ended up in the back of the theater for that reason alone. 

Initially we went in to scope it out, and we planned on sitting in the first row of the 2nd tier-- extra walking room, and the guardrail in front of us instead of someone's back. But after we returned from the concession stand (he wanted all of us to go together), it ended up working out because the rear of the theater meant less attention drawn to us.

We bought two snack options to help him stay seated: a small fifty-dollar popcorn and a seventy-dollar order of nacho chips. The napkins were free. I also had back-up granola bites and cheese crackers in my purse.

Hayden actually thought the previews were the movie but I told him they were commercials, and the Cars movie would be on soon. I think we all enjoyed the short Toy Story animation thrown in there-- he got excited when he saw Buzz and stood up and clapped :) He said, "me have one!" I said, "that's right-- you have Buzz at home!"

He lasted over an hour. UNREAL. Again, he did stand up a bunch of times-- at one point even handed me his sippy cup as a signal that he was ready to go-- but eventually he sat back down. He had been blinking a lot even though he was still hyper, so I knew he was exhausted. 

Eventually I looked over and he was asleep. 

After the movie ended he was still sleeping. We gently nudged him awake during the credits. The theater was empty at this point, and he looked confused for a moment. But after we got up and headed down the dark hallway to exit, he repeated, "best movie! best movie guys!" With his hand in the air, of course, because he tends to put his palm out when he really wants to emphasize what he's saying.

He continued to thank us for most of the 25-minute drive home.

So, again, GO HAYDEN! This was a WOW day (as his teacher would say)

he inherited other traits, too

Just like Dan, Hayden is completely capable of functioning among messiness for an indefinite amount of time without it ever bothering him.

I am jealous, and I wish this was contagious.

Friday, August 5, 2011

I thought my blog could use another UPP

The transmission went on my husband's car (I suppose that's not exactly an UPP, but keep reading) so we borrowed my dad's this week. It's Hayden's favorite. 

Hayden likes to give his favorite things a lot of attention. A few days ago he was cleaning it with a washcloth for no apparent reason. The other day after it rained he grabbed a bed sheet and dried it. Then he tried to cover the hood with it:

It wouldn't stretch as much as he wanted but you'll notice he got the sideview. (My apologies, I can't seem to get the picture to rotate.) He told me he wanted to "keep car nice".

Anyway so the next time we went to use it, his shoes got a little wet walking from the house to the car. And when Hayden shimmied himself into his booster seat, he stepped on the edge of the backseat leaving a few blades of grass and some specs of dirt.

He pointed to it and wanted me to clean it. I can not even name how many substances this child has gotten on my backseat, my front seat (sometimes he plays in the driveway, sans keys), the floor, the dashboard, the windows, the doors...and whatever other parts I am not thinking of. But heaven forbid a few blades of grass are on the seat in Poppa Z's car...

He really is a car snob. Just like my dad said. (If you saw the blog post from the other day, I drive a Chevy and my father has a Cadillac-- which I don't think most people would be able to tell from that picture.)

I've missed blogging about a few other instances here and there-- such as Hayden riding his tricycle naked on the way to the bathroom when I was getting his bath ready last night, or this morning when he flushed the toilet so I would get out of the shower, or when I caught him standing on a chair in front of the kitchen sink shaving his face with dishsoap and a paintbrush earlier--
but I'll try to be better about keeping up with his ideas :)

Thursday, August 4, 2011

it takes a village

I hate that we have to rely on other people to get through every single work week. 


The End.

Wednesday, August 3, 2011


Earlier this evening I was taking an acid reducer-- it was a pill that I swallowed, not chewable-- and Hayden happened to be standing next to me (surprise, surprise). 

He asked me what I was doing, and I told him I was taking my medicine. 

He said, "Me mes-sin." I said, "you want medicine? I'll give you medicine."

I knew I didn't have any chewable vitamins, but we do have a dissolvable lemon-flavor aspirin powder. I diluted it in way too much water to make it a little more bland, took a sip, and I thought it still tasted like sweet, gritty lemonade-tea. So I added even more water and stirred it to dissolve better. I drank more than half, and then Hayden wanted to try.

He smelled the liquid, and then he stuck his finger in it. I told him that it sort of tasted like iced tea. Over the course of a few minutes, he actually took 2 or 3 sips. Very tiny sips, but he did it.

But wow. Maybe we'll be able to get something in him one day? Maybe?

I can not believe he asked me for medicine. And he actually tasted it. 


Tuesday, August 2, 2011

brief dinner conversation

Dan was working late, and sat down to have some dinner just before Hayden's bedtime. 

He was talking to Hayden about cars... Cadillacs and Chevys to be specific; Poppa Z's car and my car. All of a sudden Dan blurted out the lyric to the Billy Joel song: 

...traded in his Chevy for a Cadillac-ac-ac-ac-ac you ought know by now..."

I found the video on youtube to show Hayden, and then he went to get his keyboard and brought it to the table to play along.

When it was over Hayden put his fists in the air and exclaimed, "Rock Roll!"

Dan said, "Rock n' Roll!"

Hayden said, "Best kid world!"

Dan asked, "You're the best kid in the world?"

Hayden said, "Yeah!"

Dan asked, "Where do you learn these things?"

Hayden exclaimed, "You guys!"


Monday, August 1, 2011

I don't need a slap in the face to see reality

     Just this morning I was thinking how I dread the day when Hayden is stronger and faster than I am. Lifting him using the hands-under-arms method is getting pretty tough, but if I use my arms like a harness I can still carry him. Even if he's resisting, I can put my right arm in between his legs and hook my left arm around his torso and at least carry him a short distance.

So our first struggle on this fine Monday was over the fact that Hayden wanted to play in my Dad's truck, and I wanted to take a shower before the physical therapist got to the house. (We are borrowing my Dad's car because the transmission went on my husband's.) Unfortunately the doors were not locked so once he realized he could get inside, he invited some friends to join him. Hayden put Curious George in the backseat with a couple other people from his toy bins. I was still wearing what I slept in, and did not want to go outside unless I had to. So, from the front door I yelled to him to come back inside. Apparently they all refused. 

Finally, Hayden got out of the truck at one point and I quickly pushed the lock button on the remote. Eventually, he angrily made his way back in the house. I closed, locked and bolted the door and took my shower. 

Our second struggle began when I finished getting ready. Now I needed to clean him up before the therapist arrived, and he didn't want to get off of his swing. I used my harness-hold to get him in his room and he fought me the entire time while I changed him. As soon as I was finished, he unlocked the double-locked door and went back outside. I was straightening up his room and making his bed when I heard the front door open. 

This time he was "washing" my Dad's car with his bare hands.

The physical therapist pulled up and he followed her inside. She came in with a scooter, and after H pushed about a dozen or so steps on it he was done. I mean, finished for the remainder of the hour. My original intention was to take him out to lunch today, but following his behavior this morning I was not brave enough.

Later on when it was time to leave for speech therapy, he was not only happy to go but anxious. "See Step-y!" he exclaimed. I said, "yes, you're going to see Stephie!" I heard how well he did when my mom took him there last week, so I was looking forward to seeing him work with her again. (We can only fit her in during summer schedule.)

He started out beautifully and then it turned to musical chairs. Then throwing his hat. Then laying face-down on the floor. Then whatever else he could think of to avoid completing any single task. Every so often he'd calm down enough that she almost had him re-engaged, but it never stuck. 

After forty minutes of this she asked if I was ok cutting the session short, and I agreed. Now, of course, he didn't want to leave. I had to carry him to the car and just as we were about to pull away, I heard Hayden say something. I turned around and his seat belt was unbuckled. I told him to put it back, but I couldn't tell if he was really trying or just faking it. Either way, it was still unbuckled.

I got out of the truck and walked around the other side, opened his door, leaned in to reach for the buckle, and he slapped me across the face. 

I grabbed his hands in mine, looked him in the eye, and told him he can not hit me. I buckled him in and we left. I had been hoping to take him to DD after speech, and I really did want an iced coffee, but he never cooperated with Stephenie and I thought was a bad idea. I settled on a diet soda from the closest drive-thru. On the menu board I saw that the kids meal toy was a mini instrument, and knew Hayden would love that. I got a 4-piece meal just so I could offer him the toy.

We ended up with a mini piano, which was perfect considering his current obsession with the keyboard from my sister. He immediately reached for it, and I said, "tell me you're sorry for hitting me and I'll give you the toy and the food."

He sulked for five minutes and then fell asleep. 

He woke up when I stopped at the mailbox. I told him a new car magazine came today. He wanted to see it, and I reminded him I was waiting for him to tell me sorry. When I pulled in the driveway I think he mumbled it, but it was low and whiney so I said, "what?"

He didn't answer.

I went around to the other side to get him out, and when I opened the door he said, "Sorry, Gad."


"Sorry, Mom!"

"Thank you, Hayden. Here's the mini piano, and your food, and the car magazine."

"Kicken in there?" he asked.

"Yes, there's chicken in there."

"Thanks, Mom!"

"You're welcome. Thank you for telling me you're sorry."

At this point I really hoped-- I thought-- we would end the day on a positive note. Until it was time to change him again and he had another meltdown.

After I finally cleaned him up I went to use the bathroom, and by the time I was done he was already outside "fixing" my Dad's car. He found two pieces of scrap wood, put one on each side of the passenger tire, and aimed his toy drill at the headlight.

I stopped him just before he broke something or potentially scratched the $@%# out of it.


I was on the phone with my sister a short while ago, and after updating her she asked whether or not we were still considering medication.

I received an email on July 27th, after following up on the status of Hayden's Clinical Trial participation, that they are still waiting for approval and hopefully it won't be much longer.

Not that we have any idea how the heck we're going to get any medicine in him (if you've been following my posts you understand), but on days like today I'm reminded that we likely don't have a choice.