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.
About a month ago we went to this awesome park in Dublin. It is a bit of a drive for us, but it had a water feature / fountain to play in, and one of my Meet-up groups was heading there.
In addition to the water feature, 
This is the toddler structure, a little more manageable for Holly to climb and play on without help. The thing is, it was a very hot day, so she wasn't too excited about doing much besides playing in the water.
And of course swinging on the swings. This is a little bonnet that she got from her 
But the Main attraction was this water feature. Holly was roaring to go and wanted to try it out. There were three steps down into the deepest section and holding my hand she climbed down without a second thought and was walking and exploring and trying to check out the fountain. She was doing so well and the water was only up to her waist I decided to take a seat and let her play. You can see from this picture I was maybe 8 feet away from her.
Well she was having a wonderful time, until she fell. In the next picture you can see how she is starting to loose her balance. I think it was a combination of the wind, and a strong water current from the waterfall. Also I think she was a bit over confident and didn't realize that it takes extra skill to walk in water. She fell to the side and went under, she would normally have caught herself on her hands and knees and stood up, but I think the shock of being under she sort of flipped around onto her back and was struggling to "float"
She was kicking her legs and waving an arm but her Bonnet was heavy with water and was pulling her down backwards and making it hard to keep her head out, her face was out of the water, but her ears were under and she was on her back which she really dislikes. This all happened in a matter of a few seconds before I was at her side and scooped her up. She seemed to have swallowed a little water but was fine by the time I reached her and was really just scared.
I don't have a lot of pictures from the rest of the day because my camera got submerged when I went to rescue her, as I was holding it taking pictures when it happened. Once she was relatively calm i made her a bottle and we sat and took a soothing break. I took out the battery and memory card from the camera and let them dry in the sun. After her bottle she was ready to play again. I was worried the camera was 
We went back to the tubes she was playing in earlier. In the tubes it was shaded and she was damp from playing in the water, so she did do some climbing. And had fun, but she was 
It was very 
We would take a break. On the other side of the park was an amazing sand pit with a ton of sand toys. I didn't get any pictures because of the waterlogged Camera, but we filled some buckets with water that she splashed, in the sand, and we went to the waterfall to fill them.
Over the next two hours we slowly got 
Eventually she was splashing int he waterfall and running all around, and happy. It took a while, and several breaks 
Slides - 1 - There were several but it was too hot to go down many except the tube slides, and those she can;t do yet without help.
Here is Holly trying on her new digs before we head to the beach and the parks with Water. I love those little sun glasses, she likes playing with them, bu they don;t stay on for more then about 3 seconds. Her little clogs are wonderful, but they don't really fit her yet. She tries to walk in them, but they have large soles and are squishy and too big. In a few months we will try again.
Here is the little miss playing with her Magna Doodle! She is actually "Drawing" I am so amazed. She loves taking the little animals off of the top and is just learning to use them to imprint the shapes, but she mostly takes the pen in and out and scribbles with it. It is much easier to draw with the magnets then having to apply real pressure of a crayon, but this is how you learn.
Doesn't she look like I could be sending her off to school with her book bag. I love this little back back on her, and once she has a few favorite toys she can put them in her bag and carry them around with her when we go out to play. But in the mean time, it was fun to put it on her for the picture. Unfortunately she will need a real back pack much too soon.
This is Holly's new baby doll. She loves to take the hat off and "try" to put it back on. She uses the doll in speech therapy with Stephanie and they feed the doll with a spoon and give her a bottle and a kiss. It is amazing the imitation she does. She amazes me every day.
I know... A Scary picture. She is mad about something here, and well with all the cute and happy pictures I always post, I wanted to share a grumpy one. Holly has a thing about other people touching her or getting into her personal space. So my guess is that in this picture, Sienna is trying to close the door on the house, or go through it which just makes holly very mad, so she is having a fit. She is really upset, on one hand, but on the other its like elephant tears, because as soon as I pick her up, hold her and remove her from the offending situation she is all giggles and smiles again. I think this has something to ho with her sensory issues.
I wanted to share this picture of Joshua. He is such a sweetie. He is about 20 months old now and is really starting to blossom, he is often very shy. I think Holly was having a hard day though, as she tried to follow him into the toy box and crawl on top of him into the other one (see she doesn't mind getting into other people's personal space) and Joshua didn't like that much so he slapped her. Poor Holly, she started to scream, and then Joshua started to scream, but she was fine. It took about 15 seconds to calm her back down, and by then Joshua wasn't in the toy box any more, as his mom (Horrified and apologetic) removed him, so Holly climbed in happy as a climb.
One last picture from our play date at Chloe's, This is Sienna, I think she is about 34 inches tall and she is just 14 months, she is a big girl. She is still getting the hang of walking, she she has the tendency to sort of hang on things and people as she is getting around, Holly is not a fan of this, but I keep letting her get into these situation, because really having other kids in your space is a way of life, especially if one day she has a little sibling that she will have to share her space with, so i comfort her, but don't try and prevent it before it happens.
I guess this is the post of angry faces. Here we are at Willard park off of Derby, one of our favorite parks, better known as the "doggie" park by Sarah and Isabel. I think in this picture she is frustrated because she is having trouble climbing back up the side onto the bouncy surface. She was a little impatient with Mommy getting over to her and had a bit of a tantrum. I was trying to see if she would work through the frustration and keep trying, but balance that without letting her get to frantic. Its a fine line to walk.
Speaking of fine line... That's something that I would love your thoughts on, I totally get Holly and I push her to be out of her comfort zone but then provide a safe and comforting and secure place for her to go back to before she then reaches and pushes out again. So we are often in situations where it seems like she is grumpy and fussy and that she cries at every little thing. Other moms say, aww maybe she is tired, hungry, ect. But I know she just had a bottle, was recently changed, and woke less then an hour ago from a nap. She is just getting a little over whelmed and expressing her whininess of it, but still wants to "stay" yet these helpful moms give me looks like, hmmm maybe you should take her home for a nap she is unhappy... She isn't really, she is just working really hard at processing everything, and gets frustrated, and was taught how to express her feelings. I usually just ignore the comments, nod and smile or say, oh she just woke from her nap, but I don't want people to think I am a bad and neglectful mom because I let her stay at the park and continue playing when she is whiney and cranky and sometimes making those very unhappy faces.... Do you deal with this too, or do you just take your kids home? 
Here she is happy as a clam pushing a baby around in its stroller, of course it was someone else's toy, but the little girl was a bit older and on the swing and decided to share and let Holly play with her toys, it was very nice of her. Here is little Sarah hanging out next to the Dragasaurus thinking about crawling over and climbing on. She really likes rocking back and forth on it. She is such a tough little girl, she will tilt over and fall off and not even notice, simply pick herself back up and move onto the next thing, I think holly would be hollering in about a split second flat, its interesting observing different temperaments and building a tool set to work with them all. So this was my random, extra pictures and random things post. Hope you enjoyed, coming tomorrow is the first of a 6 part series on our trip to Mendocino.
A little while back we attended a play date at Tilden Park's Little Farm in Berkeley. We had been hearing about it for a long time but didn't get around to going until just recently. There is a lot of cool stuff to do in Tilden, Little Farm is just one of them.
On this particular Day we were running a little late. Holly had therapy that morning, and I tried to get her to take a nap, but she wasn't having it, so we headed to the play date. We were meeting a number of Mom's from my meet-up group, about 30 were in attendance, but most I didn't know. Gigi and Simone, Melanie and Eliana, and Cynthia and Erik were in attendance and I ran into them and was able to say hello. Emi and Parker were there too but we never saw them, our stay was pretty short.
We started off saying hello to some sheep. When we first went up to them holly seemed to be OK. She looked at them with Curiosity. Mommy pet them but she didn't want to. So I fed the little guy a piece of Lettuce. he chomped it down and as it disappeared Holly lost it.
I immediately took a step back and walked away from them. We decided to explore for a bit and headed over to the Little Garden. I think they actually have sessions where kids can come and work in the garden and help grow the veggies. It was pretty cool and gave Holly a chance to relax and calm down.
After she was calm, I decided to let her explore a little. She had been in the car, then the stroller, and then my arms, so I thought maybe she would be in a better mood if she had some freedom. She was hesitant to do much, but was happy to walk around. There wasn't a changing table anywhere to be seen, and I ended up having to change her on the ground in this little "classroom" but it was quick and easy and she seemed to be in much better spirits.
She pushed around the stroller, and explored. After a bit I decided it was time to try and visit the animals again. This time we went to a different area where there were some Goats. She was ok Upon Approach, but as soon as I fed the goat and he gobbled up the cabbage Holly lost it again.We walked around some more to wait out her tears and let her calm down.
She found a new area to play in away from the big animals. By this time I was perplexed. She seemed ok at first with the animals, but didn't like them eating. Was she overwhelmed, was she tired, was she scared. And this is where I start to talk about Fragile X, and Why it is so hard sometimes to raise a Special Needs Child. At times like these I never know if this is a normal toddler behavior, or something related to her Fragile X.
The other kids loved the Farm, and the Animals, they weren't scared or confused or frightened. I hate to compare her to other children, but I don't know how toddlers are supposed to act, so its hard not to wonder if every little quirk is temperament, normal, Fragile X, or who knows what.
I think when she gets overwhelmed she starts to become sensory seeking. But then that is even hard to confirm, is she teething, is she seeking input to help regulate her senses and help calm herself. She chews on everything. The other thing is anxiety, I know its an issue for some Fragile X girls, but is it something you need meds to get over, is it something you can learn to get over. I have this theory that if I continue to push her she will learn to accept new situations, but what if that's not the case and i only make her more anxious.
So of course, three times isn't always a charm and I tried again with a Cow. This time I simply had to walk towards the cow and she started to cry. So instead we went into a little barn that had little ducks and rabbits and chicken, and she wasn't scared of them. They of course were little and not eating the Cabbage I brought. Just when I thought things were looking up, the Rooster crowed and she freaked out again. meltdown four. This time it was just about more then Mommy could take and I decided to leave. On our way out, I let her take her time, walk, wander around and explore, a little to cheer up, but that darn rooster kept a crowing, and she would cry each time. 
Near the parking lot there was a fun little playground. Some of the Mom's I was meeting were hanging out and eating there lunch and there kids were playing. It was piping hot. I couldn't touch the slide, and Holly was so ready for her nap by then. So I said hello and we took off. It was too hot for me to let her play, but I am about persistent as Holly is and we will be going back again, hopefully next time she can play at the structure, and maybe the animals will be less scary. Being a parent is like playing Russian Roulette, you never know what thing you might do to totally screw up your kid, and you never know what is up next.
At the Alameda Library they have Music class every Monday and Friday from 10:15-11:00
Isabel and Sarah met us again, but 
The Friday group is much smaller and the room is also much smaller, so it did still seem a little crowded, but wasn't too bad, especially since Holly had a chance to explore and meet the other babies before the singing started.
The babies loved coming up to me and looking at the camera, so I took several of there pictures and then showed them the baby in the camera. This was very popular. Once the teacher started it was Mommy's turn to be out of her comfort zone.
Several of the first songs we sang were not on the song sheet and were songs Mommy didn't know but everyone else did. So I felt a little anxious and lost not knowing the hand gestures or words. This was fleeting, and Holly wasn't even in my lap singing, so it didn't really matter much, but I found it frustrating that we weren't using the song sheet provided. I was forced to adapt and it certainly helps me to sympathize with what holly sometimes goes through, and how important 
Even though it wasn't the same room, I think already Holly was doing better. She recalled the singing from a week earlier, I think she remembered the Library. She was Happy to see Sarah, and she got to explore the room before it filled up with a bunch of other children.
Sarah loves music class. She dances and giggles and is so easy going. She is happy to be in the center of a horde of kids, even a mosh pit I would guess. She can be a little bit of a pit bull when she wants something and can easily hold her own over a older kid, because she is big, for her age. he lets you know just what she wants, and 
Also since she wasn't super mobile yet, she stayed close to her Mommy who knew all the songs and did all kinds of fun gestures and games with her while singing. She had a 
We hit a slight rough patch when we did a few songs where the parents got up and walked in a circle. I think Holly was 
This suited her just fine. She was happy to walk around and sing as long as she had me to hold onto. I think that makes a big difference. When she has me int he room to look back on, reassure, hold my hand, or to hold her it helps to makes her so brave.
After the walking songs the teacher took out the musical instruments. In addition to Holly warming up to Music Class, Mommy has learned to to watch for the rough spots. I went to the box myself and got her a few items. Handed her one and then let her down to explore.
Because she already had her toy, she was much more comfortable with the other kids when they crowded around to get hers and Mommy had spares, so when she ran up and didn't have one, I could hand her another and she would happily run off and play a few minutes longer.
She really liked the bells, they jingled and made cool sounds. She also I think recognize Sailor, a little girl we went at the Summer party. She was here with her dad.
When it was time for the parachute, Mommy was prepared and picked Holly up while the other kids climbed on board. She didn't want down and held on tight. But we were able to hold onto the edge and walk in a circle and sing as we spun the other kids around. She was interested, but happy to be tucked in my arms.
After when the kids went underneath she pushed away and asked to be let down. She ran under with the others and hung out in the middle for maybe half a song, but then though better of it and scooped a little bit closer to mommy and the edge.
Here she sat happily for three more songs and enjoyed the parachute overhead make waves up and down. She had a lot of fun, but on her terms. Mommy was more then Happy to comply with whatever she needed.
After that it was clean up time, and we sang a new to us goodbye song. She wasn't eager to give up her toys, but I was able to distract her with my water bottle. I also wanted to share these pictures of three quilts on the wall, each square is a favorite children's story. It was very beautiful
In the end, we had a really good time. There were no major meltdowns, she seemed pretty adjusted. She didn't want to do everything, and wasn't her normally adventurous self, but I have to remind myself, that she is usually in a very familiar environment when she is most adventurous, Our park, Home, and Chloe's house are a few places she is very familiar with.
I think it is important though to continue to expose her to things that make her 
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