About a month ago Holly and I met with a group of other local FX Families
It was a lot of fun though most of the parents don't live that close to us and have much older kids
After the lunch Holly wanted to play outside in the fountain
It was a lot of fun on a hot California Day
We got to meet Holly Roos another FX mom who lives I think in Ohio
She works around the country for the National Foundation helping to set up parent groups
Day 5 of MRI Practice is going well. Holly hates the ear plugs and swats my hand away in her sleep whenever I try to put them in her ears, but the Noise Cancelling ear Phones seem to do the trick. I just finished listening to the 30 minute MRI Sounds CD on full volume and she slept right through it. Daddy's sanity holding it together while we have been practicing is not going so well. I did it today during her nap so maybe Daddy could get some sleep tonight.
She did wake up once during a nap trial and called me (I was in the living room) I came in and told her they were science noises and laid her back down and she went right to sleep, but she had pulled of the head phones and sat up. At least the sounds didn't freak her out.
The first time she woke up during it we were in the living room and it was playing on the stereo, I took of the head phones laid down with her and we finished listening to the CD she fell back asleep. All good trials.
Tomorrow night we will be at UC Davis Mind Institute doing the official MRI, so I have my finger's crossed that all goes well. We plan on skipping her nap so that she will fall asleep and we can do the scan closer t 8:30 rather then 11:00pm. We have however a full two days. She is also doing the EEG, Mullins, and some other testing and since we are staying over night for the first time, I will be doing a study as well.
Wish us luck.
(PS be thankful it is only a picture and not a video)
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.
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 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.
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.
Here we are at Disney on Ice. Sadly we never made it inside the arena. We tried, I felt like on this event I did everything right and we were as prepared as possible. Holly was totally fine walking in and even with the crowds of people in the lobby but the moment we walked into the seating area of the arena, before the show even started she totally flipped out. We ended up sitting outside for the entire first half of the show. Chloe's Dad brought us this princess dress in case perhaps seeing him and the dress might coax Holly into going inside, she wanted to wear the dress but not to go inside. She watched much of the show through the curtain barrier and I would hold her near the doorway and walk a step closer moment by moment thinking we could even hang out int he back, but as soon as we were fully inside she would get upset and begin crying again. 
Afterwards I spoke to several other parent's in my various groups and a few suggested that it might be the Acoustics, not the loud noise, or the sounds themselves, or the crowds or the dark, as none of those things in other environments seemed to upset her, but the very fact that in such a large space the sound acoustics are different then say loud music in a car or small house, and that the brain processes those sounds in a different way that she perhaps could not handle. In retrospect it made a lot of sense, as when we went to Yo Gabba Gabba there was no music in the hall when we entered and went to our seats, it was only when the show started that she was upset. However at Disney on Ice, there was background music playing well before the show began so those acoustics would have been bouncing around causing havoc before the show began making it an issue to even go into the Arena seating area. 
Here we are at Intermission, Chloe came to visit us. Holly actually did worse while she was visiting as she began to fear I might force her inside while earlier I would bring her in slowly but leave the moment she got upset so she felt in control. We left shortly after the second act began. Holly even watched about 20 minutes of the show on you tube that same afternoon, so it was not the show itself that was causing fear either. She was also able to articulate that she was scared, when we watched the video you could see audience member's clapping and she said that's Coco clapping in the seat she is Happy, Holly is scared. We have talked about it a lot since, she will tell me she is scared of the "Mousy House" and remember. She isn't yet able to articulate what she was scared of, but developmentally I think that her ability to acknowledge the emotion of fear at all is a huge step. I handled it much better this time.
The other day Chloe went to Cirque Du Soleil and I was really sad about it, I wish I was able to take Holly to shows like that, but besides the fear factor there is the sitting still issue we can't even do movies yet. When i told her Chloe was going to the circus she said Holly go to, and I said well Chloe is not scared of the show she likes to sit in the seat and clap, but Holly was scared at Mousy House so I decided to skip this new show. And she said, Holly try again. I told her that it was very brave for her to want to try again and we will soon. I was thinking of taking her to the circus like Ringling Brother's when they are in town, I think the acoustics won't be a problem in the Big top, but the tickets are cheap if it is an issue. I am also hoping to take her to a Movie again soon with the expectation of walking out, but first I am trying to get her to sit through a movie at home, which she doesn't want to do. I even thought about coordinating a tour of the arenas where she could go during the day when it was empty and see the seats with the lights up and the stage. One mom suggested maybe during a sound check so she could hear the noises, I think the more I expose her the better she will do. I have hope, even though it makes me sad a little. i love the theatre and shows and concerts they were a huge part of my life and if she can;t ever handle it, I will be sad to not be able to share it with her, but she is only three, we have a lot of years to work up to it and I have faith that with determination she will overcome the anxiety and fear associated with it. i can tell she wants too, so we will keep working at it together.
Here are some pictures, a few months old of Holly at her current "School" Small Voices.
It is a parent participation early intervention, center based program. We attend three times a week for two hours.
For the last 5 months Holly has had mostly drop-off attendance where I stay a few minutes and then once she is settled leave her at School.
Prior to leaving her we were there for about 5 months, and then began working on the transition. It was a really slow process, but she was comfortable with all the teachers and had made friends.
A few months back we began our transition to the public education system and over the last several months the school district has been evaluating Holly for services. I was lucky enough to have her IEP 1 month prior to her third Birthday.
I was pleasantly surprised by how smoothly the IEP Process went. The evaluators were very open to listening to Holly;s current teacher's and service providers, took there input, evaluations, and comments to heart and had there eyes open when observing Holly.
Ultimately a few conclusions were made. Holly is extremely bright, her Test Scores for cognitive Ability were average to above average in most areas. She also takes intervention well and had made great progress with her current providers. When taught she is like a sponge and absorbs all that is given her, thus has many above age range skills.
However, this is in a testing environment and when she is observed in a group setting she presents very differently. Her skill sets appear at a 30-40 percent delay, she has a lack of focus and attention. She does not attend to activities and is easily distracted she flits from item to item, she is sensory seeking while also easily overwhelmed and deals with anxiety, she needs centering and proprioceptive and vestibular input on a reoccurring basis to maintain any type of focus, she does not pick up on social ques easily from other kids and left to her own devices does not learn new skills when they are not show. She needs a high level of continual adult intervention to be successful in a learning environment.
These were the things I was afraid the evaluators would miss, as they are all so easily masked by her eagerness to please, her willingness in a testing environment to complete high level novel tasks and follow simple instructions when she has several adults attending her, including Mommy. Luckily the evaluators saw right through her and listened.
To that end the school district decided to take a very proactive approach in hopes that as she got older she would excel in a mainstream environment, so as we transition we were offered both OT and Speech two times a week as well as consult hours. We were also offered PT until the end of the school year (June) to then be re-evaluated for next Fall based on how she does, in addition to consult hours. We were offered Extended School year and an Integrated Classroom.
We agreed with all of the placement recommendations and services offered, but there in lies the rub. The classroom in the ideal situation has 8 Typically developing kids and 7 kids with an IEP of similar function levels to Holly. Several of her goals orient around speech, attention in a group setting and social interaction. This type of classroom would have a Special Ed Teach, a low Student to Adult Ration and be a great transition for Holly from Small Voices.
However, all of the classroom as filled, as it is March and the school year ends in 3 months. Of course they are required to place her, but due to unions and whatnot, they can not add her into an already filled class. So they started a new class. This class however does not have any typically developing kids as there are none to enroll. It also right now only has 4 kids in total.
The teacher is new to the district, and has most recently been teaching much older children, and while she does have 10 years of experience in Special Ed, She has only taught kindergarten and never pre-school before. When I visited the classroom she had only been there for less then a week.
But there was no schedule, no routine, no structure, no aid. and the classroom having been left empty the whole school year had been pillaged by others for the last several months so it was in a state of disarray. In Addition Holly's IEP talks a lot about her need to get sensory breaks and fill those sensory needs, but the School District does not allow swings, and there was only one small terribly worn trampoline in a courtyard, with no handle and a rocking chair for her to use, but with no classroom aid, and built in structure little opportunity for her to utilize what little equipment they had. And again none of it was in the class itself.
Her school day will be 5 days a week from 8:45-12:45 which is 20 hours. This is also a big change for us. Right now on a good day we get to school by 9:45 and she is only there until 11:309, so not only will our day need to start about an hour earlier, but the day will eventually last two hours longer. At this time I plan to continue with Swim and Gym on Friday's and skip school, so we will only attend 4 days a week.
But 16 hours from 6 is a big change, and though I plan on taking it slow and spending lots of time with her in school for several weeks, its a long day for her. She is not yet Potty Trained and she is a very picky eater and she will have a lot less structure then she is used to in Small Voices. It will be very different.
I have so many changes to think about. bedtime for example, if we plan on getting up earlier she needs to be asleep before 10:30, but Daddy doesn't get home from work until 7:00 so that is a lot less time she gets to spend with him. Also Naps, right now she takes them most days around 3:00-5:00 but that is way too late for a bedtime of lets say 8:00pm. So the question is whether we decided to skip naps all together.
Perhaps at 1:00 when she gets home from school she will be ready to nap right away and then we can do afternoon play dates, maybe that's what we should do until the Fall, and then when it starts getting dark earlier at like 5 skip naps and go to bed early. It is really hard to tell and know what will be best until we are in the middle of it so I will have to play it by ear, but not having a plan makes it very hard on me and makes me nervous.
Also back to her school day. I talked with another Special Ed Preschool teacher, the one I know through friends and other parents, the one I know has been doing preschool for 20 years and is so very highly recommended and she basically told me, Holly is a big girl now. and unlike a toddler program (small voices) most pre-school programs do not have as much structure. At Small Voices they had structured transitions and activities every 20 minutes or so with clear clean up time and transition times between each.
While there are some structured opportunities like circle time and lunch the first hour of the day is open play. She did tell me that sometimes there are facilitated activities with adults to help out with-in that hour to help kids move from one activity to another, but that time is structured much less. This particular teach will ring a bell after each section of time for clean up and transition and there is a posted schedule. So I am hoping that once Holly's teacher gets her feet on the ground and settled she will also institute some of these things.
My sister tells me that it will be a time for Holly to learn to cope and be more independent and I have to let go a little bit, but it is hard, as I have seen how much she strives in a more structured environment when she knows what to expect next and can follow a routine. While her classroom at this point is not ideal We technically agree with the placement of an integrated room and other then finding a private preschool and having them fund that or staying in small voices which is only 6 hours a week, we don;t have many options.
I plan to make the best of it though, the thought being that it is a temporary placement and the teacher is new and excited so i am sure after a month of getting things together it will be a lot more flexible, I also plan on spending a lot of time helping out in the classroom so hopefully that will make a difference, and honestly I can buy a rocker from ikea for 10$ and a Sit and Spin from Target for 25$ so if I need to get these things for her class I will.
I visited on a second day, a Monday morning and surprisingly things were much calmer. There were four kids on this day, one a little girl who is 5 and going to Kindergarten in the fall. She was very verbal and tried to play with Holly, there was also a substitute aid there which seemed to make a difference.
I think part of the problem with going to school somewhere else would be to balance that out with her getting all of her services, in addition none of the private pre-schools have openings, wait lists at some are a year and at others they might only have an opening of 10 kids with 500 applicants and it is a lottery, plus most only take kids in September. 
The ones that I could likely get her into would be home based and more like daycare which i don;t need, and aren't much better. So I have dedicated myself into making the Public School better. I have already attended a parent governance council meeting and become involved with the various parent groups in the district
I also think my reputation proceeds me, so I will be active, involved, and I am not afraid to make waves when needed. I feel like it will be a year of many changes, I am not sure if we are completely ready for them all, but we will certainly be jumping in head first.
To tell you the truth, while I am even a little scared of regression over the 5 week summer break as a stay at home mom who doesn;t need to worry about child care for that time, I am kinda even looking forward to the break. Early morning playdates, long afternoons at the park
Frequent visits to the beach and the pool, I think that we will have so much fun over the summer break that I will be sad and miss Holly in september when she has to start school back up again.
She is growing up really fast. in exactly 2 weeks she will be 3 years old, a pre-schooler. She has changed so much in even the last month, she talks so much now, every day she does new things. She tells me thank you and I love you, she has little rituals and mischevious schemes. I adore her and being her mom and watching her grow up is a blessing.
