Zavier's Blog

Conversation

2012-02-10T18:15:00.000-08:00

Zavier: "Two Curious George dvds."
Me: "Oh really? Which ones?"
Zavier: "Amazon.com."
Me: "Ok." (went to amazon)
Zavier: "Type 'Curious George dvds.'"
Me: "Ok, look, I did. Now which ones?"
Zavier: "Curious George, Widescreen Edition. Curious George, A Very Monkey Christmas."
Me: "I see it. How about something cheaper? Curious George Makes New Friends?"
Zavier: "No. Curious George, Widescreen Edition. Curious George, A Very Monkey Christmas."
Me: "Ok. I'll put them on the wish list."
Zavier: "No, add to cart."
Me: "No, they are expensive. I put them on the wish list."

Zavier then played with his phone, and took a bath. I spent some time finding cheaper Curious George movies.

Me: "Hey Zavier, I found some cheaper Curious George movies. Want to see? How about first get dressed, then see it?"
Zavier: "No, first amazon.com."
Me: "Ok. Look, I found 3 movies. They are on sale. They are: Curious George Makes New Friends, Curious George Sweet Dreams, and Curious George Goes to a Birthday Party. Do you want the 3 of them?"
Zavier: Pauses, studies them, then says: "Five Curious George dvds."
Me: "Oh." (laughing). "You want all five?"
Zavier: "Yes."
Me: "Uhhhh, ok I guess. Go tell Uncle Eek."
Zavier: (to Uncle Eek, from memory): "Uncle Eek, can I have Curious George dvds. I want Curious George Makes New Friends, Curious George Sweet Dreams, Curious George Goes to a Birthday Party, Curious George Widescreen Edition, Curious George A Very Monkey Christmas."

So since he has me wrapped around his little finger, I ordered all of them ;).

XBox Kinect

2012-01-05T06:49:00.000-08:00

In December 2010, my parents generously gave us a new XBox 360 Kinect for Christmas. It was for the family to enjoy, but they also had Zavier in mind, because it was reported in the news that other children with autism liked Kinect (it's similar to the Wii, except you don't need to hold anything in your hands when you play).

The family loved it. Well, except Zavier. He wasn't really interested in even watching them play...until now, about one year later. We found a game called Just Dance Kids 2, and since it has songs on it that he loves, he will sit and watch it. Then the other day something really cool happened: Zavier stood up and agreed to play beside his dad. And the two of them danced to Head Shoulders Knees and Toes, and some other songs that Zavier selected. It was a really beautiful moment. I wanted to stay to watch, but I had to pick up Abby at preschool, so I just left the house smiling.

Happy New Year

2012-01-01T09:07:00.000-08:00

Some of Zavier's accomplishments for 2011:
-improved in PT so much, they moved him to one day/week (insurance will cover 2-3)
-successfully completed major dental surgery in a children's OR, and recovered from it
-started to allow the use of a motorized toothbrush
-began chelation and was a really good sport about it
-improved receptive and expressive language
-successfully completed Kinder (great reader!)

Goals for 2012:
-enroll in a gymnastics class for social and improved gross motor
-continue chelation
-improve handwriting
-successfully complete 1st grade in June
-continue to work hard at his receptive and expressive goals

Christmas

2011-12-26T22:43:00.001-08:00

Overall, Zavier had a great Christmas. This is the report on what he received:

"I have 6 Curious George dvds, 10 Wiggle dvds, phone, trampoline, toys." ~Zavier

Christmas

2011-12-06T15:41:00.000-08:00

I was reading my book, and I heard a little voice say within a few inches of my face:

"Mommy, can I have 6 Curious George dvds, 10 Wiggle dvds, phone, toys Christmas?" ~Zavier, counting off on his fingers each present request.

Calendar

2011-11-30T09:03:00.001-08:00

I moved the month to December a day early, to see if Zavier would notice. He did. He came up to me and complained: "December? No. It's November."

Football

2011-10-16T22:34:00.000-07:00

Zavier has been getting better at catching and throwing the football lately. He even took it to bed with him (usually he likes to hold his dvds while he falls asleep).

Blues Clues

2011-09-22T22:20:00.000-07:00

Tonight Zavier answered every single question that Steve asked on Blues Clues (tv). It was really cool.

Cute quote

2011-09-22T22:18:00.000-07:00

I invited Zavier to join Kyrsten & I on the sofa. We had both recliners out, so he was going to have to climb over. I didn't say that though. I just said: "Hey Zavier, want to join us on the sofa?" He decided to comment on it using a quote he got from somewhere. With perfect eye contact, he said to me: "Oh say, it's your child. Climb on over."

I smiled back and said, "yes child, climb on over."

:)

Weekend

2011-09-12T00:52:00.000-07:00

The other day, we took Zavier and his siblings on a car trip to a nearby mountain town. We stayed in a nice hotel, ate at a yummy restaurant (Zavier got to eat his beloved burger and fries), went apple picking, and visited a horse farm. They offered to do therapeutic riding for Zavier in the future if we are interested - yay!

Zavier did really well. On the drive home, he said, "Mommy, can I have go to Zavier's house?" It was really cute.

Singing

2011-09-06T19:09:00.000-07:00

Zavier loves to sing the lyrics & dance along to this song on YouTube, here is the link, just copy-paste it:

http://www.youtube.com/watch?v=j8mwXyiWE8Q

Only instead of saying, "Get the moves," he says: "Get the moose."

Spy vs Spy

2011-09-02T19:23:00.001-07:00

Zavier quietly takes Abby's movies like the characters Spy vs Spy. Tonight, after she discovered he had taken her last Strawberry Shortcake dvd, she proclaimed, "ahh! Zavier, you are ruining my life." His response: "Hee hee hee hee."

Honesty

2011-09-01T19:35:00.001-07:00

I put meds in Z's juice. Tonight when I asked him if he was going to drink it, he replied, "no. make potty drink juice. dump it out." Then he was quiet and said, "spill it." Good to know his plans ahead of time ;).

Back home

2011-08-28T05:40:00.000-07:00

Our summer vacation is over, and we're back home. Zavier did well on the plane. He watched dvds for an hour, then just hung out. He drank apple juice, liked the ice, and didn't want to eat anything. He mostly just sorted his dvd collection, watched HGTV without headphones, and snuggled.

Music

2011-08-21T05:04:00.000-07:00

Zavier has discovered Hip Hop. There is a hip hop/rap song on his Wow Wow Wubzy dvd, and he has been listening to it a lot.

Me: "Zavier, what are you doing?"
Zavier: "I watchin' Wub Idol."
Me: "Are you listening to music?"
Zavier: "Yes."
Me: "What music is it?"
Zavier: "No fear."
Me: "I don't know what that is. Is it hip-hop?"
Zavier: (giggles) "Yeah." (giggles again)

Conversation

2011-08-12T07:05:00.000-07:00

Zavier: "Meet Strawberry Shortcake."
Me: "What?"
Zavier: "Mommy I want Meet Strawberry Shortcake dvd."
Me: "Do you already own it, or do you want me to look for it?"
Zavier: "Yes."
Me: (sigh)
Zavier: "Where is it?"
Me: "I don't know, because I don't think you already own that one. I'll get it for you from amazon, ok? It'll arrive probably Monday or Tuesday. Today is Friday. You'll have to wait 3-4 days."
Zavier: "Yes."
Me: "Ok, so do you want any other movies?"
Zavier: "Barbie Mariposa."
Abby: "I wanted that one! Zavier takes all of my movies!"
Me: "Abby, you can share. I'll order them."
Zavier: "Yes!" Starts to jump for joy.

Conversation

2011-07-24T19:02:00.000-07:00

Me: Hi Zavier, what are you looking for?
Zavier: Where Leap Frog Sing Along with Us?
Me: Oh, I told you I'd get it for you in August, right?
Zavier: August, yes
Me: Ok, well it's still July. You'll have to wait.

He's so excited for that movie :).

Swim

2011-07-05T20:25:00.000-07:00

Typically when Zavier goes to a pool, he likes to walk down the shallow end's steps, shiver a little, and then his little hands reach for the wall. He smiles - we all know what is coming next: the wall walking. Like a miniature spiderman, he has the strength to move along the wall from the inside of the pool, even in 8 ft deep water, for hours. He can go around the entire perimeter of the pool dozens of times, patiently waiting if someone isn't moving, until it's time to leave. He's smiling most of the time...no, a better word for it is beaming, so I put up with it. It's a little nerve-wracking watching him in the deep section, but he's easy to track, and very cooperative. When I call out, "Zavier, it's time to go," he simply finds the nearest ladder or stairs and gets out. (He doesn't "wall-walk" anywhere else, just at pools).

Today we worked on swimming. He wasn't happy with me at first, he clung to me nervously and whined, but he took turns with Abby, so that helped. By the end of the hour, he was floating on his stomach with my arm underneath him to help hold him up, trying to move his arms in a doggie paddle, while kicking his legs. Much better, much improved. We were both happy, and he agreed that Mommy could be his teacher again another time.

Beach

2011-07-01T21:18:00.000-07:00

Zavier has had a busy summer so far. He's gone swimming in pools, took two day trips to MA, went shopping with family, and visited various playgrounds and restaurants. But his favorite summer activity is the beach. He loves to run in the ocean, dig in the mud, play in the tidepools, and look for shells. It's so nice to see how much fun he's having. His other fav thing to do is watch is new dvd's on his portable player. He took his sister's stash also, so he has amassed a big collection in a short time.

Vacation

2011-06-17T19:08:00.001-07:00

We are currently visiting family in Maine for the summer. Zavier did well with the 3000 mile flight. He mostly just hung out, watched movies, ate snacks, and sang a few songs. His favorite is the Moose & Zee "We're going on a trip." He can't pronounce all the lyrics correctly, but it was still really cute.

7th Birthday

2011-05-27T14:49:00.001-07:00

Today is Zavier's 7th Birthday.

Happy Birthday Zavier! :)

Zavier

2011-05-20T23:19:00.000-07:00

Zavier: Mommy, can I have phone?
Me: Yeah ok. Are you going to watch YouTube?
Zavier: Yes (takes phone, opens YouTube, types in what he wants into search)
Me: What are you watching?
Zavier: I watching Silly Nick Jr Face.
Me: Do you like it?
Zavier: Yes
Me: Is it funny?
Zavier: Yes (giggling as he watches it)
Me: How do you feel?
Zavier: I feel happy.

Zavier runs off with the phone and spends the next 1/2 hr playing with it, until the battery dies. Then he returns it to me and asks for the computer so he can log in and play on it. He loves electronics. His fav thing to do lately is watch video clips involving counting in Spanish and French. His uncle is helping him. As a result, Zavier can now count to ten in both Spanish and French. He loves it. He exclaims, "language!" and could spend hours looking at various language instruction clips, if he could plan his perfect day.

Dino Dan

2011-05-15T09:17:00.000-07:00

Zavier walked over from the computer and stood next to me at the sofa. We were watching a family movie.

Me: "Hi Zavier, do you want to snuggle me?"
Zavier: "Yes."

So we snuggled and watched the movie, then when it ended, I asked him if he wanted to watch Nick Jr.

Zavier: "Yes. Dino Dan Season 2."
Me: "Ok. Well, you're right, Dino Dan is up next. Did you check the tv schedule on the computer?"
Zavier: "Yes."
Me: "Ok then. Here's the remote."

Nick Jr Boost

2011-05-05T21:50:00.000-07:00

Zavier: "Mommy, can I have Nick Jr Boost?"
Me: "Can I sit and look at it?"

Zavier got up from the computer.

Me: "Looks like you have been trying to sign me in."
Zavier: "Yes."
Me: "You know my gmail address?"
Zavier: "Yes."
Me: "You are probably going to grow up and be a computer hacker, huh?"
Zavier: "Computers. Yes."
Me: "Ok well I already signed you up for Nick Jr Boost a while ago. Here I'll sign you in."
Zavier: "Mommy, it's my turn."
Me: "Oh, you want to sit here?"
Zavier: "Yes."
Me: "Well, where do you want Mommy to go?"
Zavier: "To the computer."
Me: "Ok great, I'm already at the computer."
Zavier: "No, to the...living room. Mommy go to the living room."
Me: "Ok bye."
Zavier: "Bye."

Then he played Nick Jr Boost for 1.5 hrs, with a few interruptions from me to eat snack, put on pj's, brush his teeth, and to try to get him to talk more. Then he came and found me around 8:50pm and told me it was time for him to go to bed, thanks to 1mg melatonin :).

Climb

2011-05-04T21:57:00.000-07:00

Swim

2011-05-04T16:50:00.000-07:00

Quiet

2011-04-27T12:57:00.000-07:00

This morning around 7am, I asked Zavier to be quiet while playing with my phone, so that his sisters could stay awake.

Me: "...so Zavier, don't yell the word 'yay' when you find a cool video. Be quiet."

Zavier looked at me, then a few seconds later, he found a video he liked and whispered really loudly, "yay!"

Me: "Ok thanks Z, whispering is better, thank you."

Easter

2011-04-25T00:16:00.000-07:00

Today went well for Zavier. He participated in the egg hunt in the backyard and had a good time. He enjoyed his new Little People dvd and other items. He spent time jumping on his trampoline in the backyard, and hanging out snuggling with family on the sofa while watching Nick Jr. It was fun :)

Bobbi

2011-04-19T18:25:00.000-07:00

Zavier has an OT named Bobbi, and he likes her very much. Today at 2, we arrived in her office for our appointment, but we found out she wasn't available. "Sorry Zavier, we have to leave, Bobbi is busy. Time to go to the car."

"No. Pway Bobbi," he said, going over to her door.

"Sorry Buddy, time to go," I replied. "Bobbi is busy."

"Bobbi is busy? No!" He protested firmly, with some emotion, but remained overall calm. He pointed to the direction of her door, then looked at me, then looked back at the door (joint attention). "Bobbi!"

"How about phone?" I suggested. "How about go to car and play with phone."

Zavier sighed. Finally he grumbled, "Yes, phone."

Spanish

2011-04-16T11:55:00.001-07:00

Zavier loves Spanish. He can hear it in just about anything.

Me: "Zavier, do you want me to brush your hair, or no?"
Zavier: "Uno. Spanish time. Uno, dos, tres..."
Me: "I said or no, not uno."
Zavier: "Spanish! Let's count. Let's watch Spanish."
Me: "Ok."

TV Schedule

2011-04-10T10:03:00.000-07:00

Me: "Hi Zavier, what are you doing?"
Zavier: "Watching Peppa Pig."

I looked at the tv. Peppa Pig wasn't on it. Then I looked at the laptop on the dining room table, about 6 feet from the tv. He had pulled up a Nick Jr tv show schedule on nickjr.com. It indicated that Peppa Pig was coming up next. Zavier was running back and forth between the laptop and the tv, to see if it actually was coming up soon, in excited anticipation (which for Zavier means he's running, not walking, and then he hops twice and smiles).

Me: (looking at 4 yr old sitting on the sofa) "What tv show is on next, Abby?"
Abby: "Peppa Pig."
Me: "How do you know that?"
Abby: "Zavier told me."

Sure enough, Peppa Pig was on next. It started about 30 seconds after I was done talking to Abby.

Sound on

2011-04-07T01:41:00.000-07:00

For some reason, the audio wasn't working on the computer today. Then we had a problem with the nick jr video images too small. Both issues were I'm sure caused by Zavier. He loves to tinker with the settings. This was our conversation:

Zavier: "Mommy can I have sound on? It's broken. Fix it."
Me: "Hmmm, maybe we should re-start?"
Zavier: "Shut down? No. I want sound."
Me: "I already tried. Let's shut it down and try again please."
Zavier: "Yes."

We fixed the audio issue, then:

Zavier: "Too small. Mommy can I have Wow Wow Wubzy bigger?"
Me: "I don't know how to do that. How did you make it so small?"
Zavier: "Push buttons."
Me: "You pushed a button to make it small?"
Zavier: "Yes."
Me: "Can you push button to make it bigger?"
Zavier: "Mommy fix it."
Me: "How about we call Nana instead."
Zavier: "Yes. Call Nana."

So we did, but by then, Zavier had gotten used to the smaller size of the screen. I still don't know how to fix it, but he's happy.

Daddy bear

2011-04-06T13:48:00.001-07:00

One of Zavier's night-time routines is to say goodnight to his stuffed animal - "Daddy bear." He got it from Build a Bear as part of a military program. It has a recording inside from Daddy that says, "Hi Zavier, it's Daddy..." and Zavier smiles and says, "Hi Daddy! Good night Daddy!" It's really adorable.

April

2011-03-28T18:36:00.000-07:00

Zavier: "It's April." (looking at me, then looking at his calendars)
Me: "No buddy, it's March. It's Monday, March 28, 2011."
Zavier: "No. It's April 2011. Taxi Day."
Me: "That says Tax Day."
Zavier: "Tax Day, ugh."
Me: "Yes, it does say Tax Day ugh."
Zavier: "It's April 2011."
Me: "I hear you. You want it to be April 2011."
Zavier: "Yes."
Me: "But it's not, it's March."
Zavier: "No."
Me: "Yes."
Zavier: "No."
Me: "It will be April on Friday."
Zavier: "No, it's April."
Me: "No."
Zavier: "It's April."

I give up. :)

Day after dental surgery

2011-03-26T08:40:00.000-07:00

Zavier is doing well today. He slept from 9pm until 7:30am. He ate pear sauce and drank pear juice yesterday. Today he had a pancake for breakfast. I asked him if he has any pain in his mouth, and he said yes, then pointed to the area where they put a spacer. His foot seems to be feeling better also.

Home

2011-03-25T12:37:00.000-07:00

We are now home from Zavier's surgery. He's doing overall well. He is playing on the computer, talking - his usual self, just not eating and drinking. He's allowed to eat pear sauce, popsicles, and drink pear juice today, that's it, but he doesn't want any of it yet. The nurse said that he had a lot of IV fluids, and he peed on the potty when we returned home, so he should be ok. It's only an issue if he's still refusing to drink/eat at 8pm tonight. He isn't in pain because the numbing meds are still in his system, but he will need some paid meds later.

Glad to be home!

Doc appt

2011-03-19T01:03:00.000-07:00

Zavier had his pre-op doc appointment today.

He did so well! He was very cooperative. We received the best compliment from his doctor when he was finished:

"I think he could easily sit through a routine eye exam, now that he is responding typically in a clinical setting."

Yay Zavier!! :)

Dental surgery

2011-03-04T21:30:00.001-08:00

Zavier's dental surgery appt is on Fri Mar 25th. Please keep him in your thoughts and prayers.

Downloads and Properties

2011-03-01T21:11:00.000-08:00

Today Zavier went into Properties and changed backgrounds and did other things to the desktop. Then he downloaded the latest version of Firefox, all without permission.

I really need to figure out how to get into the admin to block him. He is too smart!

Persistence

2011-02-23T02:48:00.000-08:00

Z: Mommy, can I have Mommy's phone?
Me: No, Kyrsten is using it.
Z: Mommy, can I have Daddy's phone?
Me: No, Daddy took his phone with him on the ship. Remember? When's he coming back?
Z: November
Me: Yup, good memory.
Z: Mommy, can I have computer?

I admire his persistence in trying to acquire electronics. Today Kyrsten commented in the car that he must get his love and understanding of electronics from Daddy, because he's good at it too. That was cute.

Fix it

2011-02-19T23:17:00.000-08:00

Zavier loves electronics, but sometimes too much. There is a fine balance between letting him use them independently, and his sometimes-impish desire to figure out how they work. It's akin to a little kid 50 years ago taking apart the alarm clock and then getting caught with the pieces.

The latest electronic demise was the portable dvd player. He had used it for months without an issue, until today.

Me: "Zavier, the dvd player is broken."
Zavier: "Fix it!"
Me: "I can't, buddy."
Zavier: "Time to clean it."
Me: "No, cleaning won't fix it. It's broken."
Zavier: "Broken?!" (His eyes well with tears).
Me: "Yeah, Zavier broke it. No touching the dvd player here, buddy." (I point to the insides)
Zavier: looked at the insides, giggled a bit. Busted!
Me: "No touching it. Now it's broken. Go put it in the trash."
Zavier: "It's broken!" (tears roll down his cheeks, eyes squint, mouth slightly open.) Then he runs to the kitchen trash, and throws it away.
Me: "Come back and help me clean up the dvd's."

Zavier helps me clean up the dvd's, then crawls into bed.

Me: "There might be another one around here, buddy. I'll look for it tomorrow. You won't be able to use it though. Just when you are playing with your friends." (therapists)

Zavier sighed and rolled over, looking away.

Me: "Please don't touch the inside of the dvd player again. I know it looks cool. But it breaks it. I know you are sad."
Zavier: "Yes!"

Rain

2011-02-18T18:43:00.000-08:00

It doesn't rain much in So Cal. When it does, it's a big deal.

Today I took Zavier with me to the store. He had planned to put his socks and shoes on in the car, but it was pouring rain, so he put them on the garage instead.

Me: "I'm going to wait for you in the car. I'll open your car door for you. When you are done putting on your socks and shoes, please run to the car, climb in, and shut the door."

I went to the car (about 8 feet away), opened his door, climbed into the driver's seat, and waited to see what he'd do. First, he put on his socks and shoes. Then he looked at the rain, and the mini-lake in front of his car door. Then he looked at me. I smiled and gestured to the car. He sighed and bolted to his side of the car, climbed in, and shut the door.

Me: "Good job, Zavier."
Zavier: "It's wet."
Me: "I know, I'm sorry."
Zavier: "It's raining!"
Me: "Yup."
Zavier: (quiet for a moment).
Me: "You ready to go?"
Zavier: "Yes."
Me: "Ok."
Zavier: "Mommy, can I have phone?"
Me: "Why, do you want to play with YouTube?"
Zavier: "Yes."
Me: "Ok here."

Calendar

2011-02-16T23:45:00.000-08:00

Me: "Z, let me show you something on the calendar. What month is it?"
Z: "February 2011."
Me: "Ok look. Daddy is leaving on a boat here." (I pointed to 2/21)
Z: "Ok bye."
Me: "Ok. Look, let's look to see when he's coming back."

I flipped the calendar to almost the end.

Me: "Ok here. Daddy will come back here. What month is it?"
Zavier: "November 2011."
Me: "Yeah. He'll come back November 2011."
Zavier: (stared at it expressionless, quiet).
Me: "But Mommy will be here. And your sisters. And you'll see Nana, and Uncle Eek, and Grandpa Kap."
Zavier: (blinked back tears).
Me: "Uh, ok then. Can you give Daddy a hug? He's still here until Monday."
Zavier: (ran and gave Dad a hug).

Hair

2011-02-14T23:03:00.000-08:00

Zavier came over to me and touched my soaking wet head.

Zavier: "Wet."
Me: "Yup, my hair is wet. It's cuz I washed it."
Zavier: giggles. "You have wet hair."
Me: "Yup. Here, I'll swish it and get you wet."
Zavier: giggles. "Rain!"
Me: "Yeah, it's just like the rain."
Zavier: "Wet puddles."
Me: "Do you like playing in the rain puddles?"
Zavier: "Yes."
Me: "That's cool. I do too. I think it might rain later on this week. Does that make you happy?"
Zavier: "Yes!"

Shy

2011-02-13T20:39:00.000-08:00

Today two attractive, female solicitors came to the door. When I answered it, Zavier ran from the computer to the door and said to them: "Hi!"

Female 1: "Well hello there. Aren't you cute. How old are you?"
Zavier: "I am six years old."
Female 2: "Oh, he's six? That is so sweet."

Zavier then looked down, and kept his eyes down.

Female 1: "Aww, he's shy. Are you shy, little man?"

Zavier kept his eyes down.

Female 2: "He is just the cutest little shy little boy I've ever seen."

I smiled. No, I beamed. This was a normal social interaction. I didn't care that they thought he was shy. "Shy" is fine - typical kids are shy. Zavier wasn't acting autistic, he actually greeted them at the door and answered their q. I was BEAMING.

After they left, I gave him a big hug.

Me: "I'm so proud of you, Zavier."
Z: "I so proud you, Mommy."

Bedtime

2011-02-11T22:17:00.000-08:00

At 8:30pm, Zavier & I were hanging out in the living room. I looked at him and said:

Me: "Hey Zavier? Can you give me the phone? It's time for you to clean up the dvd player in your room. Then you can play on the computer if you want to."

Zavier ran off to his room. I waited for him to return to the use the computer, but he didn't, so I went into check on him. The dvd player, cord, remote, and all the dvds were packed up in his bag like I asked. He was lying on his bed, curled up as if he was ready to sleep.

Me: "You ok, Z?"
Zavier: "Yes."
Me: "You want to sleep now?"
Zavier: "Yes."
Me: "Ok, I'll tuck you in."

So I did, and he fell asleep right away, it was great.

Family Pics

2011-02-07T00:39:00.000-08:00

Today we had family photos taken at the park. Zavier did really well. I negotiated with him that he could use my iPhone if he first did the photos. We ended up walking quite a bit, going to different areas of the park for various settings. He had a nice time riding on dad's shoulders during those long walks, and he also held my hand. It was tiring for him, but he had a good attitude and was sweet (as usual). I hope the photos turn out well! We should get them back in a few weeks.

following directions

2011-02-07T00:31:00.000-08:00

Me: "Hey Zavier, can you please put all of your dvd stuff away? Put the dvd player in the bag, the dvds - all of it. Then please go potty."

["All of it" = dvd player, power cord, remote, 5 dvds to put back into 5 cases, and 6 loose dvds...all into one bag]

I walked away with my fingers crossed, hoping he'd listen. A few minutes later, I heard the bathroom door close. I went to his room to check. Sure enough, "all of it" was put into his bag, and he was now in the bathroom. Yay!

We have been working on directions for a while, and lately it's been building into more steps, ie: "go to the front door and put on your shoes." Today was a big deal for him, because it involved a lot of attention/focus, motor planning, etc.

I was really proud of him.

School

2011-02-05T18:46:00.000-08:00

Zavier got his Kindergarten report card from school: All A's! They grade on a different scale, so he got all "O's" for "Outstanding." So proud of him!

Disney

2011-01-31T23:19:00.000-08:00

Yesterday we took the kids to Disneyland. They had a wonderful time, and Zavier behaved really well. He liked the Buzz Lightyear ride the best, and agreed to ride a carousel for the first time. The only ride he didn't like was Roger Rabbit, and I didn't either, so we left the line (note: if you are a teen on acid, you will love the line and the ride. Everyone else - well, you were warned, lol).

Great day!

Funny

2011-01-31T23:16:00.000-08:00

Zavier loves computers, and always tries to get his hands on one. Today he was within an inch of his uncle's laptop and declared:

Zavier: (sooo close to touching the laptop) "Mission completion."
Me: (laughing) "Zavier, what did you just say? What do you want?"
Zavier: (pointing) "Computer! Uncle Eek's computer."
Me: (really laughing) "You can't have it, sorry. Good try though."

Humor

2011-01-27T21:20:00.000-08:00

Zavier laughed as a baby, and found humor in life - he was a fun kid. When we lost him to the regression at age 28 months, he would still laugh, but he wouldn't share his experience with anyone. He would just laugh while running around his room, ignoring us completely.

As he began to heal/recover, I waited for that shared humor again. I finally saw it when he was about to turn 3. We were watching a Spongebob episode, and he started to giggle at his antics, then he looked at me to see my reaction. I laughed too, and pretty soon we were both giggling whenever Spongebob did anything funny. It was a beautiful moment, and I'll never forget it. I'm not a huge fan of the show, but I will always love the character for helping us open up another window into my son's world. Each layer that we get through helps us find him again.

Now at age 6, he has a fun sense of humor. We laugh at a lot of things together. Funny books, silly moments on shows, etc. He doesn't have that connection with everyone. His older sister works hard to try to get him to laugh with her, and I really appreciate her persistence and enthusiasm. At least for now, I get to see it and experience it. Tonight we were talking and laughing about a funny game they were playing on the beach in an episode of House Hunters.

Me: "That's pretty silly, huh Z?"
Zavier: "Yeah." (giggles)
Me: "What are they doing?"
Zavier: "Pwaying silly game."
Me: "Yeah, that's funny."
Zavier: "Yeah." (laughs)
Me: "Do you want to play that too?"
Zavier: (howls with laughter) "Yeah."
Me: "Ok."

We have come a long way, and I appreciate and treasure those moments.

Putting dvd player away

2011-01-27T01:24:00.000-08:00

Me: "Zavier, it's bedtime."
Zavier: "No."
Me: "Yes, put your dvd player away."

I didn't expect him to do anything. I figured he'd ignore me, and keep watching it.

I was wrong.

First, he turned it off. Then he unplugged the dvd player. Then he took the dvd out, put it in the case, and put his entire set of dvds into our dvd bag. Then he put the cord into the bag, and then put the dvd player into the bag. Then after it was all put away, he stood up and walked away.

It's good that I was already sitting down, because I was floored.

Grocery store

2011-01-26T00:15:00.000-08:00

Zavier usually plays with my iPhone at the grocery store to keep him occupied, but tonight the battery ran out on aisle 10. He handed it to me and announced, "it's broken. Phone's broken."

Me: "I'm sorry Zavier. The battery died. Can you please sit quietly in the cart while I finish shopping? I'm almost done. I'll give you chips in the car. First shopping, then chips."

So he did. He waited patiently, even though we were there for at least another 30 minutes. When we arrived at the car, he wanted his chips reward like I promised. He said, "Mommy, can I have chips open?"

It was good communication, great patience, wonderful trip to the store.

Fun and Function

2011-01-22T22:56:00.000-08:00

We purchased a weighted lap pad from the company Fun and Function (size med/large).

http://funandfunction.com/lap-pad-p-9.html

And the slipcover for it:

http://funandfunction.com/slipcover-for-lap-pad-blue-p-11.html

A huge thumbs up!! The quality is wonderful, and it helps Zavier remain focused and calm. We see a lot less ADD-type mannerisms when he uses it (Zavier is very low energy, and I wouldn't describe him as hyper, just has issues with focus/attention).

Everyone in the family noticed the improvement. We're looking forward to using it in therapy and school.

Scholarships (and why some parents turn them down)

2011-01-14T08:14:00.000-08:00

I think the best way to explain why some parents of special needs kids politely turn down the opportunity to apply for scholarships/grants/prizes is to provide an analogy:

If you offered to paint your neighbor's house for free, that would seem like a very generous offer. But if you required that your neighbor fill out a large stack of paperwork first, including asking him for financial proof, requiring that he dig up the records that prove he actually owns the house, then he has to ask the mortgage company and real estate agent for letters of recommendation, write an essay, and then require that he has to rent a pressure washer and clean it... and after all that work on his part to just simply apply for your help, you still might not do it...well, then you can see why he might politely turn down your offer to apply for assistance. Especially if after you painted it, you wanted to take photos of him, the house painting process where you look like a hero, and then display the story and photos it in a newsletter, internet, and other various places with the proclamation: "Man who can't paint his own house gets his house painted."

~I hope organizations continue to offer scholarships/assistance to families with special needs. And I hope they can also understand why some families might not apply. ~

Church

2011-01-09T12:20:00.000-08:00

Usually Zavier sits with us during the church service, rather than attending the kids group. I'm trying to teach him now to sit quietly, so that in a few years when he's too old for kids group, he already knows how to behave in church. Right now, he's allowed to sit with the iPhone and watch video clips on mute.

But today, he had a hard time keeping quiet. The video clips were funny to him, so he laughed loudly. I had to bring him to kids group, and I wasn't sure how it would go, so I stayed with him. They were playing a video and working on arts and crafts. He amazed me. First, he cut out snowflakes with scissors. Then, he followed the directions on the kids video to dance, do certain hand movements like clapping or raising arms, etc. And he said hi to everyone who greeted him. It was wonderful to see.

Haircut

2011-01-08T16:26:00.000-08:00

One of the first video clips on Autism Speaks showed a little boy sitting patiently in a hair salon chair, letting them cut his hair. They said he had learned how to do that with the use of ABA therapy. I wondered how many hours they had spent preparing him, because there was no way that Zavier would ever sit in that chair. Zavier has let me cut his hair for a while at home, usually while he played on the computer. I didn't try to take him to the hair salon. Not because I had tried and failed, but because I know my kid and his fears, and the task seemed too daunting. I had mentioned it to his lead ABA therapist as a potential goal, but we had other more important priorities and goals, and didn't end up working on it with ABA. I figured we would probably work on it "sometime in the future" and then let it go.

Until today. We went today!

I started the process by negotiating it with him last night.
Me: "Hey Zavier, can I take you to the hair salon tomorrow?"
Zavier: "No."
Me: "Please? You'll sit in a chair and they'll cut your hair with scissors. They won't touch your ears. Then we'll go get fries."
Zavier: "Fries? Yes."
Me: "Ok, so first haircut, then fries. Ok?"
Zavier: "Yes."

So today after lunch, I took him to the small hair salon at the PX (a military store). It was quiet, and the hair stylist Teresa looked friendly. At first, he covered his ears in the waiting room chair, and looked miserable. Then he sat in the salon chair, and each time she took another step, he protested calmly: "No." But he cooperated anyway. First she put on the black cape, then the white neck thing, and then spritzed his hair all over with water. He looked nervous when she brought over the scissors and said "no!"... but I reassured him she wouldn't touch his ears. So he sighed and turned on the iPhone to watch a YouTube clip. After that, he was completely still. Snip snip snip, cut cut cut...he just sat there calm and quiet. She praised him a lot, and she seemed happily surprised that he was cooperating. Hair fell onto the phone, and he giggled as I tried to blow it off. When we were done, he waited patiently for me to pay for it (I gave her a huge tip), and then we left to get fries.

Huge success! :)

3 comical things

2011-01-07T22:49:00.000-08:00

Zavier had us cracking up tonight.

#1:
Me: "Zavier, who loves you?"
Zavier: "Mommy, Abby, Kyrsten, the computer, Daddy..."
Me: "The computer?"
Zavier: "Yes."

#2:
Zavier: "June. June. June. June."
Me: "Zavier, stop saying June. Please, say something else."
Zavier: (he thought for a moment) "May. May..."

#3:
Zavier: "May. May. May."
Me: "Zavier, seriously, shhhh."
Zavier: "shhhh"
Me: "No, you shhh. Quiet. No more May. Enough."
Zavier: (settles down into his pillow on the sofa, looks at tv)
Me: (walk out of living room, into kitchen)
Zavier: whispers once: "May!"

Facial Recognition

2011-01-05T01:54:00.000-08:00

Zavier had a really sweet preschool classmate last year. Today in the car, I asked him if he wanted to see her, and if he missed her. He was like "yes!" and "yes!" So that was really great, but...he had just seen her a few minutes prior at the playground, and he didn't remember her at all. She ran up all excited and said hi. He said hi back, but his face was blank - he didn't recognize her. So he has the happy memory of her, but didn't have the facial recognition memory today. Bummer :(

Let's Read!

2011-01-05T01:51:00.001-08:00

Tonight we had a cute conversation:

Zavier: Mommy, let's read.
Me: Ok, what do you want to read?
Zavier: Clifford and the Snowball (or some book title like that)
Me: Ok, can you find it for me?
Zavier: Here it is!
Me: Ok, go lay down.
Zavier: (lays down)
Me: Ok. First I want to tell you, I had a great day with you today.
Zavier: Let's read!
Me: Oh. You don't want to talk about today?
Zavier: No. Let's read.
Me: Ok.

Current Favorite Things

2011-01-01T15:23:00.000-08:00

Zavier's current favorite things to do when he's not in therapy are:

-looking at his large collection of Clifford books
-playing on the computer (he likes nickjr, disney, and starfall)
-playing on my phone
-watching Little People dvds
-listening to Little People music
-snuggling with Mommy
-go to the park or play on our swing-set

Autism Recovery

2010-12-30T23:33:00.000-08:00

During my stroke recovery in 2007, I noticed that my short term memory suffered, my ability to think clearly and process info was a struggle, and I couldn't walk a mile without sitting down pale and winded (I had been a marathon runner prior). BUT I had these interesting new abilities and thought processes that I didn't have before, and that surprised me. As I recovered, I lost those new, cool abilities, and gained my old self back. The process gave me insight into how much the brain is capable of, how quickly it can be taken away (ie: stroke), and that when some areas are neg. impacted, sometimes the brain can do some extraordinary things in other/new areas.

Often we see children with autism demonstrate amazing things. Zavier could read at age 3. Some children with autism can play the piano beautifully after hearing the music once. Someone asked me: "If you were offered a way to cure your child's autism, but the cure would rob them of the thing that makes them special, would you do it?" I think it's a bias question (clearly the person asking would answer "no"), but I'll post my answer here:

I want my son to be his best self. I have noticed that physical issues such as his mito issues, sky-high bacteria levels, GI issues, etc, are impacting the way that he thinks. I have noticed that as we help him overcome these health issues, his autism symptoms improve. It makes me wonder - at least in my own son's case - what autism really is. I think a better question to ask me would be this: "Do you want to heal your child of his physical health issues, at the risk that some of his special qualities might diminish?" The answer is yes. I want Zavier to heal, and to overcome his obstacles.

Today I asked him: "Zavier, is it hard for you to think sometimes?"

He answered: "Yes."

I then asked: "Is it hard for you to think and talk?"

He answered: "Yes."

I responded: "Well, Mommy is working hard so that you can learn to think and talk without it hurting. You are working so hard too. I love you, Zavier."

He was quiet, then answered: "I wuv you, Mommy."

Reflection

2010-12-30T23:09:00.000-08:00

The other day while I was sitting in Zavier's speech therapy waiting room, I picked up an issue of O magazine. Oprah had told an audience that we all want to create a life that matters. I thought about it, and then went home and googled the concept. I found there are numerous books out there that talk about how to "build a life" in which you'd "feel like you matter."

Interesting.

Parents of special-needs kids don't have that problem. When we receive the diagnosis, and everything else that goes along with it (the therapies, the IEPs, the struggles, etc), that automatically builds a life in which we matter. Every morning, we wake up and look into the eyes of a child who profoundly needs us.

Merry Christmas

2010-12-25T23:06:00.000-08:00

Christmas went well for Zavier today. He woke up, went to the bathroom, then hung out with his sisters in their room while waiting for Nana and Grandpa Kap to arrive. Then when it was time, he went to the living room and opened his presents. He seemed happy with his gifts, and would often bring them to his room after he opened them, then return for more. He received:

1. 25-30 Clifford books
2. Leapster Explorer + Dora game
3. VTech Reader + Toy Story + Dora games
4. 5 Little People dvds
5. 2 Little People cds
6. Trampoline
7. Brown Bear board game

We didn't have batteries for the VTech, so he didn't play with that yet. He did play with the Leapster, but wanted to do other things instead. He loved the Clifford books and trampoline. I rearranged his room, cleaned, and organized it to make room for the new items. He really liked his new room. He spent most of his time looking at the Clifford books, and watching the Little People dvds in my room (I have a dvd player in there).

He did realize there was a Little People dvd missing. He had memorized all of the titles on his wish list, and knew that Animal Stories wasn't there. Around 4pm, he finally said something to me.

Zavier: "Present? Can I have Animal Stories?"
Me: "Oh honey, no Animal Stories, I'm sorry. It sold out. I looked everywhere. Do you feel sad?"
Zavier: "Yes."
Me: "I'm so sorry, Zavier. I really tried. I'll keep looking, ok?"
Zavier: "Ok."
Me: "But for now, you have wonderful toys. Did you like your presents today?"
Zavier: "Yes."
Me: "That's good. I love you."
Zavier: "I wuv you."

Pretend

2010-12-22T23:53:00.000-08:00

Today was positive. We have been working a lot on imitation lately (ie: Head Shoulders Knees Toes, etc) and pretending. Zavier came up to me while I was on the computer and this was our conversation:

Zavier: "Let's play pretend."
Me: "Ok, what do you want to pretend to be? How about a dog."
Zavier: "woof woof."
Me: "That was good. I know, how about we pretend to be frogs. Can you come over here and we'll be frogs together? Look, let's leap like a frog and say ribbit."
Zavier: (started to leap with me, laughing, saying ribbit).

When he was 3, his special needs school teacher said the kids had gone on a short field trip to see the airplanes, and many of them were pretending to be airplanes. Zavier didn't want to participate, which of course I knew, because that just seemed like such a stretch for him to do. So it has been nice to put soooo much effort into it as a family, trying to make it fun, and finally see it pay off. The pretending skill is finally clicking :).

Dumping meds

2010-12-20T02:09:00.000-08:00

Zavier's liquid meds are mixed with juice in a reg. size glass, and then he's asked to drink them. A few months ago, he figured out there's medicine in it, and he specifically requests "juice, no medicine."

His latest ploy has been to take the juice to the bathroom, and flush it down the toilet. He got away with it for about 3 days, until I caught on.

Mommy: Here Zavier, drink your juice.
Zavier: (Attempts to take it to the bathroom)
Mommy: Hey, where are you going?
Zavier: Bathroom
Mommy: Why are you taking juice to bathroom? Stop.
Zavier: You stop.
Mommy: No, you stop.
Zavier: (hands me the glass, then shuts the door. Later, he emerges).
Mommy: Zavier, did you pee on potty?
Zavier: Yes
Mommy: Good job, now drink your juice.
Zavier: No
Mommy: Yes, please drink it.
Zavier: No drink it. Flush it.
Mommy: No, we don't put our juice in the potty.
Zavier: Medicine in potty.
Mommy: No.
Zavier: Yes.
Mommy: No.
Zavier: (sighs).

Where

2010-12-20T02:03:00.000-08:00

Zavier: Where Dora calendar?
Molly: I don't know, where did you put it?
Zavier: There she is!
Molly: No Zavier, you actually have to find it first. Then you say 'there she is.'
Zavier: Mommy, can I have Dora calendar?
Molly: I don't know where you put it. Do you want me to help you look?
Zavier: Yes.
Molly: Ok.

Getting Ready for the Day

2010-12-13T09:49:00.000-08:00

Zavier usually starts his day by waking up and going immediately to the bathroom. Our conversation started after he was done, and was about to take a bath.

Zavier: "Mommy, can I have close the door?"
Me: "Yeah sure, do you want me to leave too?"
Zavier: "Yes."
Me: "Ok, so you can have your privacy?"
Zavier: "Yes."
Me: "Ok, that's fine. I'll do that after I turn the water off."

After the bath...

Me: "Excuse me, Zavier, are you ready to get out of the tub?"
Zavier: "Yes." (climbs out, grabs towel)
Me: "Ok I put your clothes on your bed, please go get dressed."
Zavier: (runs to his room, gets dressed)
Me: "Are you all set?"
Zavier: "No. Can I have fix it?" (his boxer briefs had bunched up into one big roll)
Me: "Ok here. Now finish getting dressed."
Zavier: (finishes getting dressed, then comes out of his room)

Time to eat...

Me: "Zavier, what do you want to eat for breakfast?"
Zavier: "Can I have pancake?"
Me: "Sure, do you want jelly on it?"
Zavier: "Yes. And juice no medicine."
Me: "Ok."

After he ate...

Zavier: "Mommy, can I have phone?"
Me: "Yes, after you put your plate on the counter. Go get your plate from the dining room table, and put it on the kitchen counter."
Zavier: (completes the task)
Me: "Good job, Z, here is the phone."

He's currently still playing on the phone. He loves YouTube clips. In a few minutes, we have to leave for Speech Therapy. But that is the basic jist of our morning.

Conversation

2010-12-07T20:00:00.000-08:00

Zavier got up off the couch, and ran into the computer room off the kitchen.

Me: Hi Zavier.
Z: Hi Mommy.
(pause)
Z: Mommy, can I have chips?
Me: Yeah sure. Why do you want chips?
Z: Because I feel hungry.
Me: Ok. What size bowl do you want - big or little?
Z: Big bowl
Me: Ok here. Do you want juice too?
Z: Yes, no medicine.
Me: I can't put medicine in it?
Z: No medicine!
Me: Ok fine. Do you want a straw?
Z: Yes.
Me: Ok, here is your food and drink. Do you want anything else?
Z: No. (walks quickly away with the items)
Me: Bye Zavier.
Z: Bye Mommy.

It's broken

2010-12-02T06:36:00.000-08:00

Zavier ate a couple crackers that are not on his gfcf diet. They were yeast and dairy free, but not gluten free. It was ok, I gave it to him to see how he's doing with the diet, to see if he still needs it.

It caused an initial huge surge of speech, followed by intense stimming (stuff we haven't seen in a while, like spinning in a circle), and then issues with word retrieval. The last aspect though isn't new, it was just hard to see him going from the speech surge, back to struggling to remember the word that he wanted to say.

Only this time, he had a comment about it, and it was bittersweet.

Zavier: "Mommy, can I have pancake?"

Pancake wasn't what he wanted, and we all knew it, because he had just discussed the iPhone with his therapist prior to coming out to see me. He mentioned pancake because I had just talked about it with him. He couldn't remember why he had originally came out into the living room to see me, so he picked the wrong word. The result was frustration. He put his knuckle in his mouth, chomped hard, and said, "ahhh."

Then he took his hand out of his mouth and said, "it's broken!"

Me: "What is broken Zavier? Is your mind broken?"

Zavier: "Yes!"

He understands the concept of broken from the computer. Our desktop is old in computer years, and sometimes when his youtube clips are playing, the computer freezes up. He then has to tell us that it's broken, and we fix it. So for Zavier, the concept of broken is close to home: he and his beloved computer are sometimes both stuck.

Questions

2010-12-02T06:27:00.000-08:00

Zavier asked two new spontaneous questions lately, and yesterday it was a "why" question!

Q1: "Where's Sparky?"
He asked it to Daddy during our trip to TN. Sparky the dog had been in the room, and then he left, hence prompting the question.

Q2: "Why?"
The "why" question came up because he wanted to eat something, and we said no.

Zavier: "Daddy, can I have pretzels?"
Daddy: "No, sorry buddy."
Zavier: "Why?"
Daddy: "Why? Because they hurt your tummy. You can eat something else."

We have been working on helping him answer why questions since the summer, and now he's getting really good at answering simple, basic why questions (ie: Why do you get to use my phone? Because I peed on potty. Why do you want a popsicle? Because I'm hungry. Why are we going on a trip? Because I see Grammie.).

I'm glad that he was able to make the leap to then ASK it, yay!

Singing

2010-11-30T18:41:00.001-08:00

Today as we put up our Christmas decorations, Zavier sang for us really clearly:

"We wish you a Merry Christmas,
We wish you a Merry Christmas,
We wish you a Merry Christmas,
And a Happy New Year.
Good tidings we bring,
We wish you a Merry Christmas,
And a Happy New Year."

Bath

2010-11-22T02:23:00.001-08:00

"Bubbles! I love bubbles!" ~Zavier hollered from his bubble bath today.

Electronic gold mine

2010-11-16T22:06:00.000-08:00

Today we went to Sears to pick up Zavier's sisters' glasses.

Zavier: "Mommy, go up."
Me: "You want me to pick you up?"
Zavier: "No...go upstairs."
Me: "You want to take the escalator upstairs?"
Zavier: "Yes."
Me: "Why?"
Zavier: "I want movies."
Me: "Ok."

So we all rode the escalator upstairs, but the movies were no longer there. I suggested we look for them downstairs, in the toy section. They weren't there either, so we just looked at toys for ideas for Z's wish list.

Me: "Zavier, what do you think about the cars? Do you like them?"
Zavier: "No."
Me: "How about these Buzz Light year things..."
Zavier: "No."
Me: "Oh look! This is really cool, it's like a puzzle..."
Zavier: "No."

Then we turned the corner and jackpot! The electronic section. Zavier's eyes lit up, and he ran over to it (Zavier hardly ever runs for anything).

Zavier: "LeapFrog Explorer! Videos! I want push buttons. Can I have pen? I want pway. Mommy, can I have LeapFrog Explorer?...."
Me: "Yeah, here you go. I have to lean it down so you can see it. Oh look at what Abby is playing with Z, do you like that too?"
Zavier: "Yes! V Reader!"

So then he started to play with the V Reader with one hand, and the LeapFrog Explorer with the other.

If there is a heaven on Earth, Zavier was in it today.

Recall

2010-11-14T00:54:00.000-08:00

Me: "Zavier, what did you do today?"
Zavier: "Yes."
Me: "Try again, buddy. What did you do today?"
Zavier: "I pway phone."
Me: "Yes, what else did you do today?"
Zavier: "I pway with computer."
Me: "Yes, and you also went to a birthday party. Did you like it?"
Zavier: "Yes."
Me: "Good memory, buddy. Keep on trying, ok?"
Zavier: "Ok. Mommy I want chips."
Me: "Ok."

Uncle Eek

2010-11-11T07:47:00.000-08:00

Me: "Zavier, Uncle Eek will be back on Monday. Today is Thursday. Thursday, Friday, Saturday, Sunday, Monday, November 15, 2010, he comes back."

Zavier: (sigh, then turns away from me and closes his eyes)

Me: "I'm sorry buddy, does that make you feel sad?"

Zavier: "Yes."

Me: "Do you miss your Uncle Eek?"

Zavier: "Yes."

Me: "Do you want to talk about it, or do you want me to talk about something else?"

Zavier: "Something else."

Me: "Ok buddy."

Ikea chair

2010-11-10T10:21:00.000-08:00

One of Zavier's favorite therapy toys is an Ikea spinning chair:

http://www.ikea.com/us/en/catalog/products/40100253

He sits in it, pulls the canopy down over him, and spins.

Old Thank You Letter

2010-11-06T00:13:00.000-07:00

I came across a thank you letter that I had written to key people in Zavier's life, around the time that he turned 4. I'd like to share it here.

*******

There was once a boy who wandered. His favorite place to roam was the beach. He’d run along the shore, and occasionally dart into the sea. It was only his parents’ loving hands that held him back. He didn’t respond to his name; he wouldn’t try to find something cool to show someone else, and he wasn’t interested in playing games.

Everyone loved him.
And they worked hard with him.
And they never gave up on him.

Now the boy still loves the beach. But he doesn’t wander anymore.
He laughs with his family as they all jump the waves together. He helps to build sandcastles, and he agrees to bury Daddy’s legs with sand. He sits on the family blanket eating snacks, and watches a Blue Angels air show.

Thank you for caring about my son.
Thank you for all of your hard work.
Thank you for never giving up hope.
Thank you for seeing the potential of every wandering child.

Yube Tube

2010-11-03T12:00:00.000-07:00

Zavier likes to play with You Tube on my iPhone, the computer, and also on the tv. He calls it "Yube Tube" (You-beh Too-buh) and it's so adorable that no one wants to correct him. We've all started to call it that.

Recall

2010-11-03T01:32:00.001-07:00

I often ask Zavier to recall recent events. Most of the time, his answers require heavy prompting. Today, he remembered all the letters he drew in OT after the session.

Me: "Zavier, did you have fun in your session?"
Zavier: "Yes."
Me: "Did you draw letters?"
Zavier: "Yes."
Me: "Cool, what letters did you draw?" (Not expecting an answer)
Zavier: "E."

His OT nods in agreement. I'm shocked. Zavier continues...

Zavier: "S."

His OT nods again. At this point, as he rattles off the final 3 letters, I'm not even processing what he's saying because I'm so surprised.

Explaining medicines

2010-11-03T01:27:00.000-07:00

Zavier is on a few rx meds/supps. In the past, I tried to sneak it into his food and drink. But since he figured out the meds in the drink, I decided to go with the direct explanation approach. So far, it's working, and he's consuming his meds/supps quickly.

Example:
Me: "Zavier look, I'm putting three things into your pear sauce. One is melatonin, it helps you sleep. Your body doesn't convert serotonin to melatonin because you don't methylate properly. The other is Candex, it helps your tummy. The other is a type of sugar that binds bacteria and flushes it out. Look, I'm mixing it up, it still tastes yummy, please eat it."

Zavier: listened patiently to the whole explanation, then opened his mouth and ate it all up.

What is it?

2010-11-03T01:22:00.000-07:00

I'm currently working on getting Zavier to ask "What is it?"

First, I wrote "What is it?" on a cue card, and then I had him read it at appropriate times. Once he got the hang of the concept, I put the cue card away.

Now I hold something hidden in my hand, and prompt him by saying, "Wuh."

Example:
Me: "Zavier, look. Wuh..."
Zavier: "What is it?"
Me: (opening my hand) "It's a rock."
Zavier: "It's a rock!" (smiles)

We've been working on it for a few days. I'm hopeful that by the end of the month, he'll start to ask the question unprompted, and possibly even spontaneously in various settings.

I waited patiently

2010-11-03T01:15:00.000-07:00

Zavier is a sweet, patient, and happy 6 year old. But I read about some kids with autism who changed when they hit puberty, so I decided to start working on the concept of "waiting patiently" now.

First, I wrote the words "I waited patiently" on a cue card. I had Zavier read it at appropriate times. After a few days, it began to sink in, and now he gets it.

Zavier: "Mommy, can I play computer?"
Me: "Yes, just wait a few more minutes please."
Zavier: (after a few minutes) "Mommy, click X. I want computer. I waited patiently."
Me: "Yeah, you waited patiently. Ok, you can have it."

Zavier's new therapy schedule

2010-11-02T19:31:00.000-07:00

I am often asked what Zavier is doing for therapy. Here is his current therapy schedule:

Mon:
10:00am ST
10:30-11:20 OT
12:30-3:00 ABA
4:00-5:00 OT

Tue:
11:00-11:50 OT
1:00-2:30 ABA

Wed:
8:00-8:45 ST
9:00-11:30 ABA
12:30-3:00 ABA

Thurs:
11:30-12:00 ST
1:00-2:30 ABA

Fri:
9:00-9:55 group typical school class - art (I'm the aide/assistant teacher)
10:20-11:10 PT
12:00-2:00 group typical school class (has ABA aide)

He is authorized for 3-4 more hrs/wk of ABA and 1 more hr of PT, but it doesn't currently work out.

Good morning

2010-10-25T23:49:00.000-07:00

At 9pm:

Me: "Zavier, it's time for bed."
Zavier: "No."
Me: "Yes, get off the computer."
Zavier: "Mommy, can I have minute?"
Me: "Ok. Just one minute."

(One minute later).

Me: "Zavier, bed time, c'mon."

I tuck him in, go to the fridge, and turn around and he's already back on the computer.

Me: "Excuse me, Mister."
Zavier: "Cuz me."
Me: "You're supposed to be in bed."
Zavier: "No."
Me: "How about Good Night?"
Zavier: "How about Good Morning?"

Conversation

2010-10-18T15:55:00.000-07:00

Zavier: "Mommy, can I have computer?"
Me: "Why do you get the computer?"
Zavier: "Because I peed potty, yay."
Me: "Why else do you get the computer? What else did you do?"
Zavier: silence
Me: "You played with Janeen, right?"
Zavier: "Yes."
Me: "Well you get the computer for playing with Janeen too."
Zavier: "Yes. Give me computer. My turn."
Me: "Ok, thank you for waiting."
Zavier: "I wait patiently."
Me: "Yes, you did. Good job."

Rainforest Cafe

2010-10-16T11:35:00.000-07:00

Last night we went to the Rainforest Cafe in Downtown Disney to meet up with friends. For anyone unfamiliar with the restaurant, they call themselves "A wild place to shop and eat." It's dark, and looks like the inside of a rainforest. There are few fishtanks, a large waterfall, 2-3ft motorized animals, and they have simulated monkey noises and loud "thunderstorms" going off every 10-15 minutes.

I was nervous to see how Zavier would do, because he's sensory averse, but he did great! Just now I asked him:

Me: "Zavier, did you like the Rainforest Cafe?"
Zavier: "Yes."
Me: "Did Mommy buy you toys?"
Zavier: "Yes! Book. Frog. Cat."

The first two were true. But I didn't buy a cat. He's just hoping for one, apparently.

Arcade

2010-10-13T00:52:00.000-07:00

Tonight we went out as a family to an arcade. We told Zavier that it was a room full of computers with games on it, and that he would have fun. He loves computers, so he was happy to go.

Once we arrived, I realized that it was going to be a bigger assault on his senses than I ever imagined. It was loud, flashing lights, and the temp was hot. This would usually cause Zavier to start to fade away, shut down, stim, and shake. So I tried to remain positive, and focus on the games he might be interested in.

First we checked out the Spider Stomp game, and he stepped on the discs that lit up appropriately. Then we went to the Dance Dance Revolution game, and he hung out with his sisters on it. Then Pacman, then a boat race game, a motorcycle game, and a shooting game.

I handed him my iPhone YouTube to give him something else to focus on in between a few of the games, and he liked that. But I'm not sure that he needed it. He remained calm throughout the whole event. I think I was ready to go before he was.

It was a great family night.

Zoo

2010-10-11T02:40:00.000-07:00

Zavier had a good day at the zoo. He liked the rhinos playing in the water. He rode around on Daddy's shoulders, sometimes walked, and sometimes played with my iPhone in the reclining double stroller.

Goodnight

2010-10-05T23:17:00.000-07:00

Me: "Goodnight Zavier."
Zavier: "Goodnight Mommy."
Me: "I love you."
Zavier: "I wuv you."
Me: "Remember, don't wake me up until the sun is up."
Zavier: (giggles)
Me: "Seriously."
Zavier: (giggles)
Me: "Look out the window, look for the light, and if you see it, then wake me up. Ok?"
Zavier: "Ok Mommy."

He probably won't wait, but it's worth a try.

Kindergarten - First Class Day

2010-10-01T20:42:00.000-07:00

Today was Zavier's first day of Kindergarten (he attends once/week; for more info, please see a few posts down). It went really well! There is 1 teacher, and 9 kids, but not all of the kids attended today. His classmates are typical and really sweet. Zavier's ABA therapist Janeen went with him, and she was really proud of him. His favorite activity was circle, and apple tasting. He didn't want to fingerpaint, so he used a q-tip instead, and made a beautiful picture for me.

Beautiful quote

2010-09-29T16:10:00.000-07:00

"There are things you will only be able to learn by the weakest among us."

Memory

2010-09-23T22:16:00.001-07:00

Zavier's memory continues to amaze me. Today he asked:

"Mommy, can I have Netflix Blues Clues Season One, Episode 10, Snowy Day?"

I should prep him for Jeopardy.

Pointing

2010-09-22T01:32:00.000-07:00

I never really considered pointing as this amazing child ability, until my son couldn't do it. I then learned there are two main types of pointing: things you are pointing to up close (proximal) and things you are pointing to far away (distal).

We started with proximal pointing a few years ago. I formed his hand into a point, and carried him around his room, pointing to the large train stickers on his wall.

"Hi Thomas," I said, then guided his hand over until his pointer finger touched Thomas. Then it was Percy's turn. "Hi Percy," I said.

It was our nightly ritual to greet all 15 characters. Then one day, he finally could hold his hand in the shape of a point on his own. Then we moved onto books, and as his vocab expanded, we could ask him questions. "Where is the duck?" I'd ask, and he'd point and touch the page.

Then we expanded to things that were far away/distal. First, I taught him the object using PowerPoint on the computer. Once I was sure he knew what it was (ie: flag), I asked him to point to it on walks. "Where is the flag?" And up went his hand, pointing to it.

He is just now getting better at doing it spontaneously while verbally telling me he wants something, AND looking back at me to make sure I saw it (joint attention). We attended a back to school party in a park, and he wanted to use the bounce house.

"Mommy can I have slide jump?" he asked, finger extended, perfect point, and then looking back at me.

"First snow cone for girls, then jump house. Good job though Zavier," I replied. "Good pointing. Good talking. Good looking at me."

The joy of seeing him point, talk, and then look at me never gets old. Everything he learns and then pulls off successfully - even something as simple as a point - feels like a daily miracle. Not much is taken for granted in our house.

Good moment

2010-09-13T17:58:00.000-07:00

Today we had some friends over, and one of them looked at Zavier with his ABA therapist, confused.

Friend: "Is he special needs?"
Me: "Yes, he has autism. That's his ABA therapist."
Friend: "He has autism?"
Me: "Yeah."
Friend: "Oh gosh, I had no idea."

Yay Zavier! Doesn't happen too often, but that was a nice moment.

Don't Quit

2010-09-13T08:39:00.001-07:00

When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest, if you must, but don't you quit.

Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out;
Don't give up though the pace seems slow--
You may succeed with another blow.

Often the goal is nearer than,
It seems to a faint and faltering man,
Often the struggler has given up,
When he might have captured the victor's cup,
And he learned too late when the night slipped down,
How close he was to the golden crown.

Success is failure turned inside out--
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems so far,
So stick to the fight when you're hardest hit--
It's when things seem worst that you must not quit.

- Author unknown

Kindergarten

2010-09-11T11:39:00.000-07:00

Zavier is attending a charter school for Kindergarten. The set-up is simple: the parent provides input on the curriculum, the school orders it, and the work is done at home. There is one day/week of charter school, and since they are all typical kids with no developmental issues, we are sending an aide with Zavier to help with focus and attention. I am so excited that our county offers this option. This will allow Zavier to continue with his other therapies, and thus continue to improve, without becoming exhausted (his mito issues result in sporadic, varying amts of energy. He's the opposite of hyper).

Yesterday, we met with his education coordinator to discuss the materials and order them. I explained that he does better when the pages are simple, with minimal directions and minimal verbal instruction. Some kids prefer MTV-like chaos photo collage materials; Zavier prefers the opposite. He doesn't like to draw or color, so while I can encourage him to do those things, the fine motor activity makes him tired. So I requested they keep that type of lesson (ie: make the child draw several pictures, then have him color it, then have him cut it, then create a mobile...just to show the sequence of a story...) to a minimum. After a while, I could tell that he was looking at Zavier with a bit of skepticism, pondering what he could do.

So I politely stood up and went over to the bookshelf, and randomly selected a book. I handed it to Zavier.

Me: "Zavier, please read this book."
Zavier: "No. Pway phone." (He was in the middle of playing with YouTube on my iPhone).
Me: "First read book. Then play phone."
Zavier: Sighed, then reached for the book, and read it.

It was around a 4th grade level, and he read for about 2 minutes. The man nodded, expressed enthusiasm and praise, shook his head slightly stunned, and then said: "Wow. Ok, I guess he can read a little better than C-A-T. That's great. Did he just read the word 'interrupted'? That's quite a word. I think he did. Wow. Ok then..."

With autism, sometimes all we have are moments. It was a really beautiful moment, and I was really proud of him.

Awana

2010-09-09T07:21:00.000-07:00

We signed the girls up for Awana, and I'm secretary of Kyrsten's division, so Zavier is coming along by default. It's loud there, and potentially very boring for Zavier, so I gave him my iPhone to watch his fav YouTube clips. He received a lot of compliments from the other adults there. He answered all of their questions, and sat quietly and played with the phone for over 2 hrs. He's such a well behaved kid - we are so blessed.

Movies

2010-09-06T08:09:00.000-07:00

Zavier woke up this morning talking about how he wanted to watch a movie, so I sent him to the bathroom first, and then set up a movie for him on the portable dvd player from Nana and Grandpa Kap. He likes to use the remote to look around in Extras and play some of the dvd games. He's incredibly happy right now.