Wednesday, September 29, 2010

48 Hours

In two short days Lilly and I will be on our flight down to Disney World!

We have a lot planned for this trip. I thought I was a Disney expert (addict?) before Lilly was born, I thought we had discovered everything there was to know when she was little; but now we are refining our Disney magic.

Lilly and I will arrive in Orlando on Friday early afternoon, and take the Magical Express to our hotel, the Polynesian. We (me) had gone back and forth about where to stay; but early the next morning I am running my first Disney race, a 5K through Magic Kingdom, and it seemed like the easiest option to be able to walk to the start instead of taking a bus in the early morning. So, Polynesian it is.

(Note: We fell in love with the Polynesian in June when we went for Lilly's fourth birthday/we're moving to New York-trip. I think we've stayed at every resort by now, except Animal Kingdom (it's on our to-do list, don't worry - but we've been there to eat at Boma - lots of great vegetarian options by the way!). I had never stayed at the Polynesian prior to this summer's trip, but our trip last December staying at the Bay Lake Tower at the Contemporary definitely persuaded us that staying close to Magic Kingdom with a toddler is definitely a bonus. Whatever my thoughts were before we stayed at the Poly were definitely transformed once I was lying at the beach looking at Cinderella's Castle on one side and Miss Lilly and her daddy swimming in the zero-entry pool on the other side. That was a moment of true relaxation. Not to mention, the resort is so convenient to the monorail to Epcot as well as the Magic Kingdom monorail.)

Once Lilly and I check in, we need to head back out to the Wide World of Sports to pick up my packet for the race. Then we have dinner booked at the Grand Floridian at 1900 Park Fare, where we will meet Cinderella, her stepsisters, the stepmother, and most importantly, the Prince. (Lilly loved this last year!) I bought Lilly a little set of the Cinderella characters that I found at Target so she can play with those on the flight down and then eat with them that night.

We'll watch the fireworks from the Polynesian before Lilly goes to sleep; and late that night Jon will arrive in Orlando from NYC. Early the next morning I'll get up to run the 3.1 miles and be back to the hotel maybe even before Lilly wakes up! We'll spend some time at the pool in the morning, then head over to Hollywood Studios to see the High School Musical live show for the last time. (While it's the very last day that this show will perform, we're (yes, me and Lilly) not exactly sad: the next show that starts later that month is a High School Musical/Camp Rock themed show: perfect!)

Lilly's Grandma and PawPaw arrive that afternoon, and at that point we will have a less structured plan! There will definitely be more pool time and relaxing. :) Although, on Sunday I do have an appointment set up for Lilly at the Bippity Boppity Boutique in the morning, lunch at Akershus (the princess meal at Epcot), and a late dinner at Chef Mickey's. And that's a "lightly-planned day"!

And while it does look like we have a lot planned, the key is to let Lilly take the lead, make sure she naps normally, and adjust our plans to her schedule as needed. That's the best thing about Disney: whatever our pace, we can find fun things to do. I can't wait!

Sunday, September 26, 2010

Mission Statement

Do not be anxious about anything, but in everything, by prayer and
petition, with thanksgiving, present your requests to God. And the peace of God
which transcends all understanding will guard your hearts and your minds in
Christ Jesus. [Philippians 4:6, 7]

Lilly's school situation is still not resolved; she is still a "preschool dropout"; we are still looking for the right fit; but I know it will work out. Lilly is a pretty important gift, and I'm not about to think that God is leading us through this without having a Plan.

Part of the "What's right for Lilly" quest has involved Jon and I doing some soul searching, some prioritizing.

When it comes down to it, we want to make sure Lilly gets the best and most appropriate education, based on what we feel is right for her, not random administrators who don't know her. But what does that mean? I want Lilly to learn to the best of her abilities, in a supportive encouraging environment. I want her teachers and friends to see her strengths and encourage her and to include her as a valued member of the class and community. I want her to develop her passions, and to continue to be motivated to learn the things that are harder for her.

But life isn't just about school and learning. Between Jon and I, we have about 50 combined years of education and training, and with that we can guarantee that there is much more to life. Life is more than just educational and career accomplishments; it's about more than being a brain surgeon or a lawyer. Trust us, we know. Life is about family, about loving each other, and appreciating the little things. It's about singing a song with your favorite person; making time to be silly; overcoming obstacles; standing up for your beliefs; and giggling with your favorite 4 year old as you put them to bed.

Our overriding goal for Lilly is that she is happy and loved and understood and appreciated for who she is. Like our school goals, we want her to be encouraged and valued where ever she is. We want her to be confident and secure. I want the world for Lilly, I want her to know that whatever she wants for herself can be accomplished with hard work. I want her to get many stamps on her passport; to eat many meals with Cinderella at the Castle; to develop a relationship with God and a strong faith. And, I want Lilly know that she always makes me the happiest most proud mommy.

Friday, September 24, 2010

Murphy's Law

There are enough things that have gone wrong right now, and I don't particularly like blogging about the bad stuff. Lilly's original NYC school situation being awful; every evaluator and IEP person only seeing the negatives in Lilly and completely underestimating her; every good private option is full; a few bad private options available but that we aren't considering; and a "special" school available for Lilly that wouldn't even be an option until mid October. (And while we're considering it because we are so low on options, "separate but equal" just isn't the right choice for Lilly in her preschool education.) A special ed preschool teacher has been coming to the house all week to spend time with Lilly, but a few hours of just intense teaching has been very draining on Lilly, and it's not the right answer either. Children, at the age of 4, should be learning through play, playing with friends, enjoying their day, and just being kids. Whether the "special" school or the special ed teacher, those are just boot camps for learning, and it's just not appropriate. It's not the least restrictive environment, which is what she is entitled to under the law; it's the exact opposite of that. And in the past week we've gotten in touch with a number of families in NYC that have a child with DS and their experience hasn't been very different than our own. Many of them have even ended up suing the school district to get access to an appropriate educational environment for their own child. But for us, with 9 months left, our options are limited, besides just going out and looking for more potential schools.

*Sigh.* So that's where we are. It's been incredibly frustrating for Jon and I, as we just want the best for Lilly. And despite everything I see such a beautiful sweet little girl and feel so lucky that she's mine, and know that we can't give up - we are her advocates, her parents, and if we don't stand up for what is right and just and fair and appropriate, obviously no one else in NYC will.

Lilly has never had a problem in school; quite the opposite, most of her teachers have said she's been their favorite child in the class. She's always made friends easily, and those relationships have been so special to witness. She is such a good learner: she is motivated by seeing what others are doing, and wants to be part of the group. She is bright and intuitive and knows right from wrong. She has a passion for learning new skills and is so proud of herself when she accomplishes something. She is a little girl who loves life and is eager to be part of the world around her.

So it makes me sad that Lilly doesn't have a place in NYC where she belongs yet. And it makes me sad that she doesn't have a friend here; that has never been her weakness. In New Zealand no matter how lonely we were for our friends and family back home, the year was a success because Lilly had an amazing time. And aside from Lilly's situation, it is hard (and somewhat ironic) that not only have Jon and I not really met friends here, but that every person I meet that's my age is a therapist or evaluator or educator who is telling me what is wrong with my child. *Sigh again*

But the good thing about us is that we're not discouraged or letting this affect our life and our love for each other. Lilly, in my opinion, has learned more from the past month of being out of school than she's learned in being in school. She's still my lovable funny little girl and we have a great time no matter what we do. And Jon and Lilly are partners in crime as always; last night he took her to the park after dinner and at 8:30 when it was pitch black out I called to check on them, and they were at the ice cream parlor; and last weekend they went to the Lion King on Broadway, to a Met's game, and to Coney Island. Next week we had originally planned on going to Disney World for the weekend, and now it looks like Miss Lilly will get to stay the whole week with her grandparents - did she plan that or what? And the biggest benefit is the time Lilly has gotten to spend with her grandparents, cousins, etc.

I am frustrated but grateful; I am separating the injustice of the NYC education system from the amazingness of my child. It will all work out, somehow, because of who Lilly is, and because of her we will figure out a solution. She deserves the best, and as her parents we will provide that.

Sunday, September 12, 2010

Where we are

Last time I blogged, a little over a week ago, a boy had choked Lilly at school, and we immediately pulled her out. There were 100 things we didn't like about the school prior to that, but obviously my child getting physically hurt by another child was way past the final straw. Just thinking about the way Lilly must have felt during that moment - helpless, fearful - I won't even walk near the school with Lilly because I don't want her to remember that experience, and worry that she might be going back.

The next day, my little preschool dropout and I picked up my beautiful niece Lyndsey and we spent the day having fun! We went to the playground, to the bookstore, multiple taxi rides (which Lilly loves - both hailing the cab, which she does great all by herself - and also watching the little tv that's in the back of cabs these days). That night, we had preplanned that my niece Julianne would join us as well and we'd all watch the new Camp Rock 2 movie. Lilly is a sucker for the Jonas Brothers, and loves spending time with her cousins. A perfect day ~ generally ~ and especially after the awfulness of the day before.

Months ago, Jon and I decided that we needed to get away just the two of us for a few days; we hadn't gone on a real vacation for just us two since our honeymoon. So we planned a trip to Jamaica for 3 nights Labor Day weekend. Which meant...

The morning after the Camp Rock 2 premiere party, my parents arrived to hang out with Miss Lilly, and Jon and I were off to Jamaica.

I honestly didn't think I could go. I mean, the past two days had been emotional thinking about Lilly's situation. All you want to do as a parent is to put your child in a place of safety, to keep them happy and healthy. And I felt that somehow we had failed Lilly by putting her in such an awful daycare, although we didn't realize the extent to how bad it was until that last day.

So the thought of Jamaica, and leaving Miss Lilly, made me panicky, but I knew she was in better hands than ever with my parents (and subsequently my nieces and even Lilly's younger nephew). So we still went. I packed in an hour on Saturday morning, and Saturday afternoon we were on a plane.

Jamaica was amazing, as always. This time we stayed at the Iberostar Grand Rose Hall in Montego Bay, and it truly was 5 star service, accommodations, everything. I would highly recommend it. I will say that there weren't tons of vegetarian options at certain meals, but they definitely were nice about trying to accommodate me. The rooms were beautiful - every room seemed to have a partial view of the ocean, and huge decks with a porch swing and couch. The bathroom of our room was bigger than Lilly's NY bedroom and our kitchen combined. And around the pool and at the beach were not just regular lounge chairs, but mattressed beach beds, so comfortable to relax on. (So much so that I got burned the first day...)

If you know Jon and I, you know we don't sit still. In our regular life, and on vacation, we are busy - always trying to accomplish something. On this vacation, we laid out by the pool and at the beach. We took naps. We read multiple books each. We... relaxed. Which is so unlike us. I missed Lilly incredibly but my parents are amazing with her so I wasn't worried about her - but I just kept thinking with everything we did - Lilly would love this music. Lilly would love this tepanyaki. Lilly would love this dance class. (Of course, it's an adults only resort so Lilly wouldn't be able to actually love any of it for 14 more years...)

So we came back rested and relaxed. We arrived back Tuesday evening, getting into our apartment around midnight.

And then life's pace got busy immediately. I quickly packed and Wednesday morning at 6:30 I was heading for the airport. This time, to Charlottesville for work. My parents were watching Lilly the remainder of the week so I could travel for work and Jon could work his long hours. So work was super busy the rest of the week for us both; on Thursday night I almost pulled an all nighter but ended up going to bed at 3 am. I arrived back home Friday night and was SO happy to see my little Lilly for the first time in a week!

We ate pizza with my parents Friday night, and Lilly showed us all the new tricks that they taught her. She can now draw a happy face, and even wrote her name completely independently!!! Of course, the L's are backwards, and she spelled it Lily without the extra L - but seriously this is such an amazing skill!

Now back to the beginning of the story - Lilly is a preschool dropout. So since that day a week and a half ago, we have been searching frantically for a new school for her. That next day Jon was on the phone all day; while we were in Jamaica we wrote emails; we faxed things all over town; even my parents called schools and said they'd bring Lilly in immediately if they had a spot for an interview. Very few leads. In fact, there are two current school options, but one is for a 12:30 to 2pm spot and one is for a 2:30 to 5pm spot. Which is weird, a) I work full time so Lilly needs full time school; but b) who puts their kid in school just for two hours a day in the afternoon - especially around naptime for a 4 year old?

So I think it hit us after my parents left early Saturday morning, that we were stuck. So I decided that I can stay home Monday and Tuesday with Lilly (she has an interview at a school on Tuesday) and then we'll probably fly to Atlanta for my mom to help me out and watch her for a week or two (or more?). But I have SO much to do work-wise. So Jon and I decided that he would let me work all weekend and he'd take Lilly out on the town so I could get things done.

So while I worked all day yesterday and all day today, Jon took Lilly to the playground, to the Lion King on Broadway, on a pedi-cab tour around Time Square (all yesterday), and back to the playground, to the Mets Game, and to Coney Island (today). It's 7:30 pm and they are still out. I have to say I am grateful and I accomplished a lot. I also have a babysitter who can help us out later in the week if we are still in town, so I feel like we are figuring things out.

So that's where we are. Lilly is school less, but we're figuring out how to make it work temporarily. It's a much better situation than where we were, with that little bully at her school making her life miserable and Lilly unhappy every day. Wish us luck in finding the right school!

Thursday, September 2, 2010

Not OK

Lilly was choked today at school by one of her classmates. My sweet little adorable four year old was choked until her face was red. Where were the teachers? Where were the other kids to intervene? What the hell was going on in that classroom? Afterwards they had a class meeting to let the kids know if you see someone choking someone else in the class, you should let a teacher know. WTF?

They never called me. It was at 4 pm; I pick her up at 5. When I got there she was hiding underneath a slide by herself. I came over and after a few minutes she came out. As I was giving her a big hug, the teacher came over and told me what happened.

And that is the end of Lilly's career at that school.

As a parent, all you want is for your child to be happy and healthy and well cared for. My concern was that she would meet friends or learn the ABC's, not whether or not she would be physically harmed. That is not OK.

I feel absolutely sick that something like this happened to my precious Lilly. We let the school know that she won't be coming back. I don't want her in that classroom, with those ineffective teachers, with kids who get away with hurting other kids with minimal consequences. I refuse to put Lilly through walking back into that place with fear in her heart that she'll be bullied again. Are you kidding me?!

And so it begins, the search for a new school. Apparently my first question from now on should be: do you have any violent behavioral problems at your school?