The Ride Home, Notes About the Trip, Videos

The ride home from Disney was not nearly as fun as the ride there, I'm not sure if it was the lack of exciting anticipation to start the vacation or the fact that we had to begin with LA traffic but it took us forever to get out of the city and actually on the road. We had to get gas and then Holly had a super messy diaper then when we got over the mountain and pasted six flags and decided to stop for some food. Holly had a lot of energy so we went to a mcDonalds with an indoor playground which was fun but all this was add into to the length of our trip. Later we stopped again because I had to use the bathroom and ran out of my drink at Coalinga and when I opened the car door I felt like I was going to melt and the 1 minute walk inside made me feel like I was cooking. It was much hotter on this day driving home then when we drove to Disney. Later I checked what the temperature was and discovered it had been 105. I think it was around 7:45 when we got home. That said there were lots of fun parts of our road trip too. Holly had new Princess dolls and she really liked them. We all also spent a lot of time singing in the car, and I got lots of time to chit chat with Joel. Holly has recently "learned" to sing herself. it has been really exciting for me. Sometimes her singing is more like shouting, but it is a long group of memorized words in a sing song like voice, and I have several video's of her little songs here.

Happy Birthday
http://www.youtube.com/watch?v=WAKvDeoXm9Y

So we have been learning time based on events, so our trip to "Tinkerbell's Castle" was after mommy's, Sara's, and Chloe's Birthday. Then she wanted to know when Daddy's Birthday was. We told her it was after Tinkerbell's Castle, and Kaylee's Birthday. Next Month. Sometimes though, she doesn't quite yet get how long away those times are. Here she decided to sing Happy Birthday to Daddy.

Rock-a-bye Tinkerbell
http://www.youtube.com/watch?v=jmRLlk6dJKI

Here she is singing Rock-a-bye baby to Tinkerbell. It is one of the songs I sing to her and I have to replace baby with Mommy, or Daddy, or Chloe, or a friend from school. In this version she decided to sing it for Tinkerbell.

Holly Singing in Car
http://www.youtube.com/watch?v=Dyag5cf1_vc

I was trying to catch her singing Doe a Deer as it makes my heart super happy but I only got the tale end and then she begins Rock-a-Bye baby in a tree top. The drive home from Disney to Berkeley is long and she has to entertain herself somehow :-) She actually sang Doe a Deer several times but we didn't have the camera ready

Resists singing
http://www.youtube.com/watch?v=90lir8rVAic

After singing Doe a Deer several times, now that we have the video camera out and ready to refusing to sing it anymore. She is such a little gremlin, so cute in her trouble makingness that you just got to laugh. She know we want her to do something so she will do anything but that. Sigh! Another thing Holly did to entertain herself was grab the camera from Daddy and take pictures. She took about 50 but I spared you by only posting a few shots. Most had her chubby little fingers in them. Many of them were of Mommy and then she had lots of the window as she tried to get pictures of outside. It was cute. She doesn't get that she has to aim the camera and she puts it up to her face, facing herself so there were several pictures of a smooshed nose.

So the last thing I wanted to talk about was the Guest Assistance Pass we used at Disney. This made the trip for us and I could not imagine the very different experience we might have had without it. On the first day we waited in line for Tinkerbell, and Daddy waited in like for Rapunzel, these lines were short compared to later days and the wait in many of the ride lines. Also on the first day it was relatively cool still, overcast and we waited in line in a shady area for those two character meets. That said, Holly was quite a little terror, sitting still was extremely difficult for her, and the heat was super agitating. Also you are not allowed regularly to take stroller's in line with you, and without the stroller it would have been a total nightmare. So the Guest Assistance Pass is for Guests with Special needs. the most obvious would be someone in a wheel chair, but because that is obvious they don't always need our pass. For guests without visible disabilities or issues you can get this pass from Guest Services. In our case I had my doctor write me a note stating her diagnosis of Fragile X, but according to the websites the note is not required, just makes it easier.

They asked me to describe her issues, Attention, Waiting, Sitting Still, Sensory issues, Anxiety with noise and crowds, and heat and light sensitivity were a few. if we had seen any of the shows this would have allowed us preferred seating in the front right before the show would start and access to an exit, but we decided not to risk it this trip. It also allowed us to access rides through the accessible entrance or in some cases the fast pass entrance, and in other cases that access was through the exit of the ride.

In most cases we would go to this entrance and either one other family or no one in front of us. We would be greeted and then have to wait one cycle of the ride, so if they were loading the ride or it was going we would be on the next 1-2 ride revolutions. Typically our wait was 5 at most 10 minutes and we were in a shaded, not crowded area where Holly would not be disruptive. Then we were able to board the ride. In many situations the actual ride wait was hot, cramped and a wait of at least 45 minutes. While this is not designed to "Cut" the lines, I felt like it made our experience doable.

I feel like without this, not only would we have been able to do maybe 25% of what we did, Holly would have been miserable and spent much of her time wanting to go home, I don't think we would have lasted the heat of the second and third day, and our trip would not have been successful. This also allow us to push Holly a little bit and try things. In one occasion I rode a ride first to see what it was like and then decided not to take Holly onto it. Also it would have allowed Joel and I to take turns riding each one waiting with Holly while the other rode, if we actually went on any of the grown up rides together.

Finally Kathy was pregnant, so I think this helped her out a lot with the limiting of the amount of standing we had to do. I highly recommend this pass for anyone who has a child with special needs. Disney itself is overwhelming, scary, and a sensory explosion. Any opportunity to minimize possible negative moments makes the trip all the better. Holly simply does not have the patience of other kids, the tolerance, or the impulse control to handle long lines. Also the pass allowed us to bring the stroller with us where ever we needed to which was nice, she had a safe place to hide when she needed one.

Its a Crab!

Its a Crab!
Originally uploaded by vczdavis

Day 28 Thursday 8/14

This morning we went for another swim, we had a lot of fun. More kids at the pool to play with, and she was talkative, and actually kicked a few times. We also went to the expo again, same as above. In the late afternoon we were hanging out in the Art Studio, and met Theo a 9 month old. He was so happy to meet Holly, and crawled up to her, they both reached out towards the other's face and touched cheeks. They then locked hands and were petting each other. Holly was so excited to be able to touch him without me pulling her hand away. She watched him crawl, and they were both standing up and looking at everything together. Also at the Disney booth a woman gave holly a 3 eyed alien from Toy Story "al" he vibrates and talks when you pinch his hand. Holly didn't know what to make of him. Once she was surprised once she laughed, and another time it made her cry, based on her mood and how tired she was. We left to drive home at 6:30, Holly was pretty fussy, and I finally sang her to sleep. We didn't get home until 1:00 at which time she ate, as she was hungry from the drive. So I gave her the Minocycline at 3:00 with 4 ml of Apple Juice and 3 pinches of sugar.

Today would be the end of her 4 week Trial, if it were not for the extension.

Holly and Mickey

Holly and Mickey
Originally uploaded by vczdavis

Day 27 Wednesday 8/13

Today I decided to give her a baby massage with sunscreen and she really liked this. It also made me happy. When we went to the pool, there was a 14 month old, a 2, 4, and 6 year old and she would reach out to the other kids and try and play with them. She was very social, I let the 3 year old hang onto her crab toy and we pushed her around together and she liked holding her hand.,

Later we went to the expo there were hundreds of people everywhere, and they all smiled waved and looked at her. She was very social, and did not get overwhelmed with all the interaction. In the expo, it was like the art museum, there was noise, color, moving objects, people, and things to look at in every direction. She did eventually get a bit overwhelmed, but not upset at all, she simply took a nap in her stroller and then when she woke was ready for more. She didn't like to stay in her stroller, so much of the time I was carrying her so she could really look around. There was an art exhibit, and we went and looked at the pieces and she had a favorite that made her laugh and smile whenever we went by.

After the expo we went to Lucian's hotel, there were more fountains in the lobby for her to look at and play with. Since we went home late, Holly woke up at 1:00 so we fed her, and gave her the minocycline at 2:30 with 4ml of apple juice, and 2 pinches of sugar.

I've Got you!

I've Got you!
Originally uploaded by vczdavis

Day 26 Tuesday 8/12

Holly was very playful this morning, we did our stretches, and she was standing and bouncing on her legs. We played music and danced. She was very cranky after her afternoon nap, but then later cheered up when we went swimming. There were other kids in the pool that she was very entertained by, she would watch them jump in and out of the pool. We had a floating crab that she liked to sit in and I pulled her around and this was also fun. She did not like getting sun screen put on. At the poolside she tried to play with Lucian, she would reach out to him and try and touch his cheek and hand, but he is still so little, I was holding her back. They did lock eyes, and she really liked looking at him. Later we walked around the hotel and there were lots of fountains, and holly tried to reach out and touch the water. They would jump like the fountains at the Bellagio and she would be surprised and then look and anticipate the next set of water. Holly ate at 8:15 and I gave her the minocycline at 11:30 with 4 ml of apple juice and 3 pinches of sugar.

Pillow Party

Pillow Party
Originally uploaded by vczdavis

Day 25 Monday 8/11

Holly is officially 5 months old today. We slept as much as we could this morning, and it was a low key day. Then headed to the convention center. Where we registered and went to a talk. Holly was a bit fussy but when I walked her around. We played and she was very social, smiling at all the other attendees who would stop by and say hello. We gave her the Minocycline at 11:40 with 4ml of Apple Juice and 2 pinches of Sugar. Her previous meal was at 9:30.

Cool Tech

Cool Tech
Originally uploaded by vczdavis

Some general notes, we have noticed that holly is much more articulate and intentional. At the start she would hold something if I handed it to her, now she reaches, picks it up, passes from one hand to the other, turns toys brings them to her mouth. She can right her pacifier when she grabs it from the side. She also has fed herself. First she would notice when we were making her bottle, now she tries to grab it while we are making it, and as soon as it is done, she takes it with two hands and puts it into her mouth. She doesn't quite know she is supposed to keep it tilted up, but she holds it and puts it into her mouth. She has made a lot of progress.

She is babbling to herself. I laid her down in the crib and she was just cooing and talking and chewing on her feet. Which she can get completely into her mouth now, and is always holding or chewing on them. This past week she had to deal with a lot, being in the hotel, not having her swing, and the extra stimuli from the conference. She handled it like a champ, smiling, social, happy, a little miss popular. Sorry my notes weren't better, but being out of town without internet access made it difficult to stay on top of all the details.