Today at Holly's nap time I asked her if she wanted to sleep in her bed or mommy's bed
Surprisingly she pointed to her arm (how she sign's Holly) and then to her bed.
so 37 minutes later (which is not unusual for nap time) Holly was fast asleep in her TODDLER BED! for the FIRST time!!! YEA!
So both a lot and a little has been going on in terms of Holly's therapy, so I will post a few updates here. Since she turned two this month we had her Annual IFSP. It actually went surprisingly well. She has at least a 33% delay in all domains, so she qualifies for all current services. Her speech is more difficult to describe, according to the report her receptive language is in the 6th percentile, and her expressive is 2nd percentile. The age equivalents are 20 months and 15 months respectively.
But both of these include the use of signing as language, since it is technically a language. So the third domain is speech, which is supposed to be specifically related to verbalization. The test doesn't score it formally so the therapist reported it as between 9-18 months (yes broad I know) since she has some scattered skills. So Speech is our area of largest concern. She isn't really verbal yet, though she is beginning to try to speak again. See at Thanksgiving she could say "Go Go Go," actually in September she could say that. But she doesn't say it now.
She rarely even say's mama or dada or baba, she uses the signs, because they are very clear and specific, sometimes I guess with her words, we don't differentiate between babbling and an actual request. Also, we were out of town over Christmas and she went 5 weeks without therapy. When we returned she had a new therapist, who not only did she have to get used to, she also had a very different style and decided to focus on teaching Holly the pecs system.
The theory being that it takes her Motor Planning "Energy" to make a sign, and it doesn't take the same effort to present a picture, so upon receiving the picture we can encourage the "Speech" and creating a sound, and she can use the motor planning "Energy" on her mouth.
The thing is, Holly loves signs, she has maybe 40. But she is not very articulate. Drive, Star, Bike all look the same, Horse, and Daddy look the same. She doesn't have the fine motor skills to really learn advanced words, but she watches baby signing times and learns them on her own.
So the next problem is she asks us or tells us something with a sign, but we don't know all the time what the sign is, either we don't know it at all, or can't tell what sign she is doing, so we are frustrated. So with all of this going on, we made a request at her IFSP to increase Holly's speech therapy by 1 hour a week. This would allow the therapist time to deal with her oral aversion and also focus more on speech.
But there are other issues too. Since Holly has a 33% delay in her fine motor skills, we requested that she get an official OT eval and possibly add an OT to her list of therapists. Katie our Infant Development Specialist is an OT, so she gets the advantage of an OT, but Katie has a lot of other things to do with her time. In Particular Katie works with her on a lot of her Sensory issues, and helps us in navigating what they specifically are, also with self help, social, and an over view of other domains.
So having a 4th person focus on OT skills would free up Katie's time to work on other items. The thing is, the Speech increase has to go to an exception committee, which I think happened today. The regional center is in the process of moving there offices, so it is a little hectic over there, I haven't heard from my case worker so I am not sure if the OT Eval needs to be approved by the committee as well. But I hope to have that happen soon.
So then, to through another wrench into the system, we are looking into a new program called Small Voices. This was recommended to us by our Case Worker, and it is actually just like the pre-school scenario I was looking for a few months back. It is 3 days a week, Tue/Wed/Thurs from 9:30-11:30 each morning. It is a parent Participation program, at least at first, but eventually I might be able to drop Holly off, just like real preschool. She only qualifies until she is 3, so this might allow her the opportunity to prepare for really preschool at three.
So here is the Catch, if we switch to small voices, then we loose our Infant Development Specialist, whom we love (Katie) and has been seeing Holly since she was three months old. But the program has an IDS, and OT, and a Speech therapist, each day two of the three specialists plus an aide are in the classroom with about 10 children. We would go basically from 2 hours a one on one therapy a week, to 6 hours of group therapy. But it is very scheduled and does a lot of coll things.
We are going to visit for a day in two weeks, to see if we like it, but I talked to the coordinator for about 45 minutes and it sounds like everything I had wanted before I changed my mind about preschool, so now I don't know. It's free, its only 6 hours, and It would provide structure, routine, socialization in a group play setting, sensory and feeding activities, self help.
But it will be a lot to juggle, (not to mention having to get up and arrive by 9:30) if we are doing this three mornings a week, and then we have swim and gym on Fridays and then potentially four additional one on one therapy sessions a week. It will make a big dent in our social schedule, because she will basically come home and nap, so we will only have afternoons free.
I guess there will be more updates with details on our visit, and hopefully with news from the case workers, and perhaps even information about her OT eval. I think the last thing that I will mention is that we have our next appointment to the UC Davis mind Institute on April 22nd. At that time Holly will get an autism assessment since she is two. And participate int he Fragile X Baby Study.
We have also increased her Sertraline from .15 to .25 on a trial basis about a week ago, so Dr. Hagerman will assess the increase and let us know if we should stay the same, increase more, or decrease back down. Holly still does experience quite a bit of anxiety, though I push her a lot more then the parent's of many typical kids push there children because we are so busy all the time. But there has not been that Language explosion we were hoping for yet, though I do think there is definitely a big decrease in the anxiety, even though it is still present.
The other issue is Holly's ears. Her hearing tested fine, but she had an ear infection when we went to our two year pediatrician visit. We just got over two ear infections not 3-4 weeks earlier, so perhaps they never actually healed, or maybe it was a new infection. It is hard to stay. So the doctor has her on antibiotics again, though she just finished them, and we go back next Tuesday. If she isn't completely healed, and there is still fluid she wants to aggressively push tubes.
She says that the infections and the fluid cause a speech delay, so when we are working really hard to improve her speech these are working against us, and sometimes Holly tries to talk, like say the word Bear, but is sounds like "baaa rrr" So it is possible that she hears Bear in that way. When I asked the speech therapist about it, she indicated that in the banana curve of audible sounds when there is fluid in your ears there is a loss of about 30%.
So if she continues to have this issue when she is developing speech it will be harder an harder to teach her to speck, and in particular in a clear manner. So while I am really nervous about tubes and a procedure like this, it may be the best thing for her. More to come when some of these issues will hopefully have an outcome.
We went to the UC Davis Mind Institute about a month ago to see Dr. Hagerman and continue our participation in the baby Study. We arrived and started out with the video experiment's first. I am not sure how much of this I have described in the past but briefly, it consists of Holly sitting on my lap and watching some video's. The computer tracks Holly's eye movements and records what she is looking out. There are several video clips, each a few minutes long. All pretty boring compared to the TV Holly is used to watching. Also this visit there was a new team of experimenters. They of course were really nice but I missed the old ones, they had history with Holly, knew her since her first visit at like 6 months old. The video is testing for several things, they explain it every time, but I can;t remember the details now. There is this dural thing that goes from the front to the back of the brain on the top and on the bottom, they are looking at the top one, and it has to do with perception of movement. So in some of the video's there were vibrating lines or boxes at different speeds, sometimes it measured if she even noticed the movement, other times one box would be out of sync with others and it looked to see if she noticed that. They also had a video with faces, upside down and right side up. Another one with sound and images to see if she would look to where the image should be when the sound was played. In between each we found some Yo Gabba Gabba video's from Youtube and she watched them and took lots of breaks. I thought she did terribly, as she needed to eat and snack and she wiggled and got mad and didn't want to stay on my lap and watch. But the experimenter's told me that she did amazingly, even when she was fussing or eating she was watching, and they reported many kids only get through one or two videos and I think she did like five of them, so they were excited.
We hardly had time for a break before we had to go and do the Mullins, but I demanded that she get at least ten minutes to run around the playroom, or else I knew she would be too fussy to sit on my lap and participate. She did really well on the Mullins in my opinion, but there was a lot she didn't know. They gave her nesting cups again, and in the time allotted her she completed 3 of the4 which I guess is an improvement, though not a reflection of what I feel she can do. they did a very interesting thing where she put this large plastic coin into the top slot of a piggy bank, when they handed her the coin where it was upright vertical and the pig was in the same direction she got it in every time. But when they turned the pig so the slot was horizontal she did not figure out to turn the coin to get it in. She kept trying to push it in, but never turned the coin. I thought this was very interesting and it wasn't a skill I had ever though of, but then I remembered that she has this set of three books that go into a book holder and she likes taking them in and out, when it is aligned correctly it is a fine motor skill challenge to get it in, but when it is turned she wasn't able to do it, so I had observed this without realizing it. So now I knew it was something I needed to work with her on, which was a revelation.
The other thing was they showed her some books with two or three pictures and then would ask her, where is the "Cat" or "Car" in many cases they simply were not words or items she had been exposed to or would know or has been taught so she had no clue, but it was also not an activity we had every really done, me asking her where is the "blank" she she got all of these wrong, besides the fact that she wanted to grab the book, play with it, and turn the pages. Another one was matching, which we kind of sort of had worked on, and at least I sort of taught her the word same. So the tester would put down a key and a car and then show her another key and ask her to point at the same or give her the same. She did about 50/50 on this I think, the problem is, both were out of reach and she wanted to explore and look at them both, so she would reach for both when they were pushed into reach, not listening to the request for same, but instead her own desire to look at the items. had the experimenter given her both items to hold and look at first, then shown her a match and asked, give me same I think she would have been able to do it. but in this scenario she didn't have the impulse control to not grab both. There were many other things she did, coloring, where they wanted her to copy drawing a strait line across the paper, but I was proud she even marked the paper at all. A few looking at her grasp, picking up small items taking things in and out of containers looking for hidden objects, but the ones described above where she struggled were the ones I remembered most.
This is an excerpt from her report: "She participated in our Baby Study and had a follow-up Mullen. On the Mullen, she scored 18 months for her chronological age. She scored 20 months in visual reception, which is in the 73rd percentile. Her fine motor score is 16 months, which is at the 14th percentile. Her receptive language score is 11 months, which is at the first percentile. Her expressive language score is 8 months, which is also at the first percentile. This gives her an overall early learning composite score of 73"
Just tonight we put on Baby Einstein's My First Signs, which she hasn't watched for a while and we noticed her sitting there trying to copy the signs and repeat them, she was babbling in sign language. She couldn't quite get her hands to articulate the sign, but she would clearly be sitting still watching, then see the child on the scree make the sign, then try to do it herself, she would move her arms or hands in the same motion to replicate it, but didn't get her fingers in the right places. We were amazed. So this was a good thing.
This is one of Holly's new favorite games. She loves climbing into the cabinet and hides from us, then jumps out when we walk into the kitchen. She is getting ready for Halloween here in her read tights, and black onezie.
On top of this she wore her little lady bug outfit. It was spaghetti straps so I wanted her to have something warm. The video of her playing Hide and Seek is from another night, the first time she did it: http://www.youtube.com/watch?v=bEv6i5CAeuY 
I took a boat load of pictures from her hiding in the cabinet and decided to post them here But the other video's are from the same time period. This next one is Holly asking for us to sing. Holly is signing, saying "more" and asking for the Open Shut Them song. We are singing in the background http://www.youtube.com/watch?v=weJ7lrF1ngs 
This next video is pretty amazing. Holly has finally learned how to bounce. It is hard to believe that at 19 months she wasn't doing a 6 month skill, but she is really stiff, so this bouncing up and down is a new thing for her. http://www.youtube.com/watch?v=U1yDknDNYYU 
This was from about 2 weeks ago, its the first time she started to bounce. She is sitting on the Bolster that I made for her and bouncing up and down. In the second video she continues bouncing. Holly is giddy and jumping for joy, she falls right off of her bolster and onto Daddy's lap. 
There is a link to the last of the four video updates. Holly is so grown up, the video doesn't do her giant personality justice, but it gives you a glimpse: http://www.youtube.com/watch?v=8kwmA8Mnymk 
Mirror Mirror on the wall who's the fairest of them all? Why little miss Holly playing at Fairyland of course! Isn't she such a cutie? She was sleepy on this day, we met friends at Fairyland after therapy so she was already worn out, but not "Tired"
So for a good part of the afternoon she was in her stroller looking and watching everything. She enjoyed it and had fun, but wasn't eager to run around - yet. We strolled around the park and checked out all the attractions.
What she was excited about was taking a train ride, and since she was being so well behaved and laid back we decided to take her on one. Since it was early afternoon on a weekday it wasn't very busy.
So we didn't have to wait in a long line to hop on the train and they were giving everyone double rides. Even so, she liked it so much, every time we would stop at the cross walk or station she would start signing "more, more"
We went on a few times during the day, and we went twice in a row too. Holly was very happy about it. She looked at all the scenery as we rode past. I think it was really just a mid-day lull and she was starting to spark up.
I think the snack we had also helped. Kat and I shared chicken Nuggets ad a Chicken Sandwich, which of course Holly ate parts of. Then she ate an entire baby food and some puffs. the food I think really helped.
She finally started to run around and explore a little, which Tanta Kat was happy about. First she ran up to this boat, but she decided that it would be more fun to try and jump into the water then to hang out on the deck.
After all the encouragement of getting her to run and play we had to snatch her up and carry her around, at least until we got away from the water, which she is always drawn to.
We decided to walk her through some gardens. Each of the little attraction areas had these miniature set-up for the various fairy tales and there were little listening boxes you could use by twisting a magic key.
Usually you would hear a story or a song or a rhyme. It was our first visit where holly showed any interest in these boxes. Mostly she liked when there were songs, these made her smile.
What she liked even more were the Ducks. There were a lot of animals in Fairyland, but Holly was so drawn to the ducks, she was giggling with glee. She quacked at them and said duck and reached for them.
We let her sit on the border and watch. She got upset when they jumped in the water, I think she was worried about them but when there little heads popped up she was happy and excited.
We sat with the ducks for a while listening to stories and fairy tales that I wasn't really familiar with but they were fun to hear. Then she was ready to go. She always finds a place to climb and crawl around in, isn't she adorable.
Here is the little rascal crawling through the tube. I am not sure what section of the park it was in but she was playing peek-a-boo with us, looking out through the holes, this is one of her favorite games.
Tanta Kat tried to crawl into the tube after her. She thought it was so funny and scooted backwards to try and escape. She would laugh and laugh. She was having a blast.
But it didn't take long for her to move on and find some more water. This was a cute little water mill that spun around and around and she liked watching the water pour and fall.
There was this really cool tall skinny tower, and Holly was drawn to the stairs she zoomed up them faster then the speed of light with Tanta Kat in Hot Pursuit. The top was actually a slide and she was thrilled with the discovery.
Twisting and turning they spun down the slide together, I could hear her glee the whole way down. She hopped right off Tanta Kat's lap and raced back around to go up the stairs to do it again.
Fairyland we decided is really designed for three to four year olds, but there were still lots of places for Holly to crawl, walk and explore. But it was fun to imagine what it might be like when she is older.
There were lots of neat bridges and pathways and slopes and hills for her to walk on which is really good PT practice and though she was a little tired she was enjoying the opportunity to stretch her legs.
This is one of the little fairytale houses, you can see Holly stretching and reaching high up to put the key into the little story box and hear what it has to say. She didn't always stay to listen to the story once it start though.
There were lots of fun flowers and little fences all around the grounds, buildings for her to peek into and go inside, fences for her to try and climb, flowers to smell. I was happy that the day wasn't to hot, though at the time I thought it was.
It was sunny and warm, but the air was dry, if we stayed in the shade there was a nice cool breeze so it was bearable. The last few days it has been rainy and then warm, so the humidity has been atrocious.
Holly loved wandering around and having such a wide open space. It was nice to let her run and we just followed her wherever she wanted to go, for the most part. As long as she stayed off the tracks, and didn't go up too many stairs.
Here Holly is being a little trouble maker. We are waiting to take another train ride and she ran over to the little snack shack to play with the other kids there. She took it upon herself to climb up the little kid chairs and onto the counter. 
Of course Tanta Kat was right behind her to make sure that she was safe and didn't fall. She is pretty fast though. So by the time she chased her down there she was half way up the chair already.
This big clock signifies Alice and the looking glass. Holly was late, very late for a very important date! So we went down, down down, the Rabbit whole. Weeeee! In fact, we went down several times.
Then we explored all the cool underground tunnels, they had these neat carnival mirrors, and as you walked on deeper into wonderland you could meet all of your favorite characters.
Here is the Mad Hatter's Tea Party, and all of our friends were in attendance, the White Rabbit, and the Mouse, and even the Hatter. We even met the Cheshire Cat, who had such a smile.
Later we had to find our way through the card maze to get out of wonderland and back into the real world. She had fun in the card maze and conquering the red queen!
Kat barely escaped with her head. But survived just in time to teleport onto the next world. We really enjoyed wonderland, especially sliding down into it. Climbing back up was pretty fun too.
It was time for another snack break. Holly gobbled down a bottle and took a rest from chasing the white rabbit. It was getting late in the day, but we could tell she wasn't ready to actually fall asleep yet so we stayed a bit longer.
We took another train ride. You can see the concern here on Holly's face when the engine pulls to a stop, she signs more, she wants it to "go, go, go" She didn't like the idea of it stopping one bit.
She is so adorable when she is worried, There were people actually crossing this time, so the stop was longer then usual, but once we started to move again she was happy.
You can see here how articulate and demanding she is telling the train more, or really, telling Mommy more. As if I had the power to make the train go, but I suppose in her eyes Mommy is all powerful.
And in fact, the train did go just after she asked for it. She took several rides, she was so demanding. We had to switch cars once before taking another ride, but she didn't mind the change in scenery.
I think this may have been one of her favorite areas. We went here twice as well, earlier when she was hanging in the stroller and later when she was up for playing. She loved making music with all the fairy instruments.
There were flutes to clang and bells to ring and vines to shake and strings to pluck. The room is a semi circle hall way and all along the walls are various types of ways to make music.
These were one of her favorite, as they were easy and very effective. it was neat how they will vibrate and ring and echo through the room, and they sounded different base don if you clanged the big or the small tubes.
This is the Fairy circle in the center. She had to of course be a part of that. All around was a little organic garden, there were fresh tomatoes growing and many different types of flowers.
These games were one of the many entrances into the hall, there was a way in and out on either end as well and little windows you could look through to thee the gardens outside.
This spinner had beads and balls inside and made a cool sandy, wavey, type of sound, very soothing when you spun it round and round. She ran back and forth from one item to the next, a little harp, some tall bells, she loved them all.
Just around the corner was a ship wrecked boat on a beach, with crockadiles. She wasn;t one bit afraid of them though and came right over to make friends... What big teeth you have, my my.
She tried to climb up the net to the birds nest too look all around, perhaps there was rescue in the distance, or civilization just beyong the jungle, you had to climb high to see what was out there.
But she didn;t get very far and ended up playing int he sand, I mean everyone knows thats what you do when the water isn;t available, its the next best thing.
She was determined to be safe from walking the plank, and gingerly scalled the boat walls, balancing herself just along the ships edge, the other pirates were bailing and jumping to the depths of the sea, but she sayed on board.
Except of course when she was hanging with the Crockadile. She thought that perhaps he had swallowed a hidden map to the treasure and if she fed him coconuts he would revel the secret location.
But in the end even though she had many fun adventures with Mommy and Tanta Kat, she realized that whether she was in wonderland, traveling the high seas, or visiting oz , there was "No Place Like Home" and home was where she was ready to go.
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