Monday, August 30, 2010

IEP Tomorrow

I won't say that it's make or break, because there are always alternatives, other options that we can choose. We are in-tune with who Lilly is, what her needs are; we would do anything to make sure she gets her needs met.

And she is SUCH a good little kid. She is funny, sweet, silly, mommy's little girl and daddy's little angel. She is learning the alphabet with such zest that I never had imagined 2 months ago before I taught her a single letter (besides the L that her name starts with). She is learning to swim, and with her floatie wings can go from one end of the pool to her daddy at the other side. She has a passion for life that I am often envious of: watching her at the Broadway production of Mary Poppins and at a Yankee's baseball game last week were both moments to treasure forever - she was completely thrilled with both events. Even going to church yesterday was a fun adventure; even though she goes regularly and knows the routine, she was so excited to get in the line for her blessing at communion; she literally danced down the aisle like she was waiting to see Elvis (or Zac Efron) or something; the priest was probably a little surprised as most people don't have the hugest grin on their face when he touches their head.

I love doing things for and with my girl. Jon and I would give her the moon if she wanted it, and I am grateful that we are involved parents and that she's an easy kid to figure out. Elmo? Check. Milk? Check. Disney vacations? Check. It takes so little to make the kid happy.

So tomorrow's meeting isn't the end of the world for Lilly, but the stakes are still pretty high.

$20,000, for example. And the proper preschool education of our child, which is the foundation to her career of learning in school. And her self-worth: a couple random individuals who have never met Lilly looking over some assessments to make a decision on what is best for our child this year.

I am hopeful but not overly optimistic. New York may be fashion forward, the financial capital of the world, with millions of people and restaurants and ideas. But in the limited experience that I've had over the past couple months, it is more backwards than any city I've dealt with. From an educator asking me how she can "break the news" to Lilly's 4 year old class about why Lilly "looks so different" (seriously? I still think that deserves a punch in the face); to taking months to get into the "system"; to segregating every type of need so that it is most unusual for a child like mine (who has thrived in typical daycares/preschools) to participate in a normal class. One local mom with a child with DS shared with me schools asking her if her child lived with her (she was 6 years old! better ship her off to the institution I guess?) and the state's suggested placement was at a "school" for kids with major medical needs - she said half the kids were on IV's when she toured the school. And I've never heard the phrases "low functioning" and "high functioning" so much in my life - can't kids just be kids?

There is not a worst case scenario; I mean, the real worst case scenario is that someone who's never met my daughter tells me how limited she is (which I know is not the case) and we respectfully disagree and go through our life savings to privately fund Lilly's school this year. We are lucky that we have options. But part of me is hoping that the educators get a good night's sleep tonite, eat their Wheaties in the morning, and see Lilly (on paper) as the kid she really is: a good little girl who needs some help in some areas, but who doesn't need to be segregated and separated from her peers. That she is a bright child who is a motivated learner and who just wants to feel like part of the group, not like they are making a huge accommodation for her just to participate. So we'll see. Wish us luck and say a few prayers.

Sunday, August 22, 2010

Friday, August 20, 2010

The System

Holy moly, is it really this difficult to get services?

We never had problems in Charlottesville. Lilly received physical therapy from the time she was 3 weeks old; speech and ot regularly after a year. The system worked with us, they looked out for Lilly's needs. Sure, we're involved parents, but they explained things to us, made sure Lilly had access to the therapies she needed.

This was one area that we thought New Zealand really lacked. Actually, had we been residents or had a 2 year work visa, Lilly would have gotten services there. (More accurately, they most likely would not have allowed us to have a 2 year work visa and access to the system because, as one government employee told us, Lilly would be "a drain on their society." Nice.) But since we were only there for a year, all of Lilly's therapies were paid by us out of pocket. Financially, that sucked. But as far as us making sure Lilly received what she needed, it was great - we were in control of making sure Lilly received speech and PT once a week, and we chose the therapists that we liked the best.

To be honest? I can't say anything about NY therapies. Because it is so difficult to access the system. Therapies work best when they are regular. A year ago, when we knew we were moving here, we started contacting the NY Department of Ed to figure out how to get services and if there was a public preschool program for Lilly. According to the 10+ people we talked to, we got the following answers: there were no public preschool options; they couldn't talk to us before we had an address; they couldn't talk to us after we had a NY address because we had to live here first; and there were public preschool options but that Lilly wouldn't qualify or be bright enough for them and they would be full anyhow. One person told us that the IEP process for NY would go much quicker if came with an IEP from Virginia that they would use so she wouldn't have to get evaluated again here. Another person told us there was no lag time in getting services, NY education system was open all summer and she'd get services fairly quickly.

We moved here at the end of June. July 6, I started calling the Board of Ed again to figure out how to get the process started. (Their website is more than confusing and there is a total lack of information for preschool aged kids like Lilly.) July 7 I faxed the appropriate person to formally request the IEP process. A few days later I called to check. They said to fax it again because they couldn't find it. A few days later, I called again to check, and they said they had mailed something to me. I received it a few days after that, and there was an information packet. There was a list of 200 evaluation centers that could possibly see Lilly; it was up to me to start calling to see who wanted to work with us. I started by finding locations near us, and left messages at 10 evaluation centers. A couple of them don't do evaluations even though they're on the list. The rest never called back. So I asked Lilly's daycare if they had any recommendations of places that would do an evaluation. They gave me a few names, and the first one said they'd take us on.

A week later that therapy center set up an appointment with Lilly with a psychologist. I was not impressed with her; I'm hoping she is relatively new to working with kids and that her skills improve. (Perhaps needs some kind of therapy herself?) Then for the next week, we also saw a physical therapist, special education teacher, occupational therapist, and speech therapist. They evaluated every possible area of Lilly. It's been almost 2 weeks since our last evaluation. Apparently I should be receiving something in the mail soon with the actual evaluations. I just spoke with the evaluation center again to figure out what happens next. They said there is a meeting on September 28 with the department of education to discuss the evaluations, the iep's, the goals, and what services Lilly may receive. And then we can start the process of getting those into place.

Seriously? Three months to the day after we move to NY, we can finally figure out what services she'll get? And then sometime after that they start?

Furthermore, apparently it is wrong that there are no public preschool programs in the area. We picked a daycare based on the fact that there were no other options, and in NYC a normal daycare costs $25,000 on average. We are paying this astronomical cost because we know Lilly will benefit from being in a preschool daycare, we're only in NYC for a year, and we both work full time. But now apparently there are public (free) options? Except - get this - because we've "waited so long" they are all full, or will be full by the time of our meeting at the end of September.

Honestly? Not so impressed with the NY education system as it relates to my child. Virginia may not have tons of resources or money in their education system, but at least they provided access in a timely manner. And NZ didn't care about my child, but at least we knew that in advance and were able to privately start therapies within days of arriving there.

On the bright side, Lilly is doing great. She is recognizing letters EVERYWHERE - in books, on signs, etc. She loves spotting an E, D, A, B, L, F, M, H, I, Y, etc. She knows words that begin with each letter from A to Z. She can sign every letter. I am so proud of her.

She's loving her friends at school too. A few days ago Lilly was sitting on a big block thing, as was a girl in front of her, and they were trying to push them around the playground while sitting on them. The girl said to me: "Look, I'm teaching Lilly how to ride a horsey." Then Lilly and her friend got up, and another little girl joined them, and they all ran around the playground together, dancing and playing.

She may not be receiving therapies, but she's in a good school, she has involved and loving parents, and she is definitely thriving. I love my girl!

Wednesday, August 11, 2010

On the Roof in NYC

The quality of the pictures is poor because they were taken on the blackberry, but here is Miss Lilly tonite on our roof. Isn't she gorgeous?

Tuesday, August 10, 2010

Here's the deal:

Here's the deal:

Lilly is my daughter and I love her to pieces. She is amazing and inspiring. She is not deficient in any way. She was born with an extra chromosome which makes her extra special, and only in a positive way.

She is my little girl. It doesn't matter to me when she does things, what timeframe she learns a specific skill. I am blessed each day that she wakes me up in a good mood (or a nutty mood), ready to tease me or cuddle me or be demanding about her need for Elmo. I love sharing our adventures together, learning more about each other. I am proud of who she is, and enthusiastic about our future.

It frustrates me that people notice what she can't do more than what she can do. I see everything she does - every single thing she does - as being something to be thankful for. If she can't do a certain skill yet, I'm not worried. I'm not concerned. She will get there in her own time. I can teach her, I can provide the tools for her to learn and grow, I can support her on her path, but I can't make her something that she's not, and I can't make her learn something before she's ready. And I wouldn't have it any other way.

This past week we had 5 evaluations for her NY IEP (I won't get into how ridiculously complicated it is to get an IEP here - and I can't imagine how a child with a less-involved family would ever get access to services). Most of the professionals came into my home assuming that we hadn't done our job as parents. And that Lilly should be doing better. I just got off the phone with a therapist who told me that Lilly should have more endurance when walking the streets of NY. Are you kidding me? This is a child who was born with low muscle tone, who has received physical therapy for the past 4 years (including our year in New Zealand when we paid completely out of pocket), who learned to walk at the age of 27 months, who is so motivated to try to the best of her ability. Of course she's going to get exhausted walking blocks in NYC. So do Jon and I - I can't imagine how her little legs do it. I see the progress Lilly has made and I am proud, so proud. But a random therapist who's seen Lilly for 20 minutes tells me she needs endurance.

Here is the thing: therapy to a young child can be great, it can be very helpful. But it's not a miracle. I think therapists approach a situation was wanting to "fix" it - but my child is not broken. She is constantly making progress. Therapy is a tool to go hand in hand with her ability. But if she's not ready to do something - physically, mentally - then she's just not ready.

In most ways Lilly is like her peers. She loves to read, color, she is potty trained, she can put on her shoes and socks. She can joke with me and share about her day and tell me every time she thinks of "Troy" (from High School Musical). She can work any piece of complicated electronic equipment. She's also an incredible judge of character. During 3 evaluations this week, Lilly left after 20 minutes. She walked out of the living room, went into her room, and shut the door. Who wants to feel like they are not good enough when they are trying their best?

One evaluator, though, was great. She was enthusiastic and positive. She asked Lilly to jump forward, and Lilly kind of step-hopped forward, and she said "Great! Good job!" Even though Lilly didn't do it correctly, she did what she could, and she was congratulated for that. The evaluator wrote down that Lilly couldn't jump forward yet, but the point is that this is an evaluation - not the bar exam. Lilly doesn't need to know if she got the "right" answer to a test; these people are just here to see how she does, which will determine how much services she will get this year. It's important for them to know what she can and cannot yet do; but it's not important for Lilly. Who wants to think that they've failed before they even know how to try?

From Lilly, I've learned patience. She has mastered so many things that are age-appropriate. There are certain skills though that she just isn't ready for yet. And that's fine.

It's like my running. I'd love to go out and run a marathon, but I'm only at the point of running 2 miles without stopping. I can run 3 miles with a minute walking break in between each mile. And that is fine. A better runner might look at me and say it's kind of pathetic, but I know where I was in March. I could barely run a minute, walk a minute, for 20 minutes, without getting exhausted. I'm proud of my progress, I know where I've come from, and I know where I'm going.

Same with Lilly. Every accomplishment is to be celebrated; we take nothing for granted.

In 2 months, I'll run my first 5K since high school - at Disney World of course. I will run for Lilly, she is my motivation. She tries her best even when it's hard. It is Lilly's motivation, determination, and hard work that inspires me.

Saturday, August 7, 2010

A french fry

It's amazing when you look up your child's nose, see something, think you're picking a boogie out, and end up pulling out a french fry, over an inch long. Out of her nose. Seriously?!

A Trip to the Zoo

Originally my intention was to update the blog today with Lilly's preschool class fieldtrip to the zoo. Tons of pictures and funny little anectodes from the precious 4 year olds were planned.

Well, I chaperoned the field trip this morning. And let's just say, I have no pictures or adorable stories. Taking 30 kids, ages 2-5, is a crazy, crazy thing. Taking the public bus system, walking for blocks and blocks, and just general nutty-ness. And there weren't even any animals at the Central Park Zoo! (They must have seen us coming and ran for cover - or at least, took a nap.)

So at risk of remembering and reliving the experience, I will put it behind me.

Instead, a brief update on my Lilly. Currently she is in the bathroom. By herself. With the book "Beauty and the Beast." For the past couple weeks, she's had no accidents whatsoever - not even during naptime at school. (She was pooping and peeing on the potty regularly since she was 2, potty trained with occasional accidents since 3, and she just turned 4.)

She is a funny girl, an independent girl. Everything is "just so." She was watching Beauty and the Beast tonite. (Actually she was watching Dirty Dancing but I finally had to turn it off so then she accidentally pushed the Beauty and the Beast VHS tape into the vcr and so I figured - might as well watch my favorite movie for a bit!) She watched it for 30 minutes, and then needed to find her "Beauty and the Beast" book. We couldn't find it, but she found a book about the princesses which included Belle so she settled for that and brought it into the bathroom, hence the above paragraph.

When she was done on the toilet, she took her clothes off and got in the tub. I turned the water on, and gave her a washcloth. She washed herself, and Elmo and Ernie, and then played with her bath "letters." Then she got out of the tub, got her towel (actually got the hand towel, but I didn't correct her), dried herself, went in her room, picked out underpants and a shirt, and came out and started getting dressed. She is so precious.

She is a good little girl. She ate her apples and carrots tonite, a little bread, and a cupcake. Whoops, forgot to mention that she had the cupcake first - but she did a good job in an evaluation today and I took her out to celebrate. She is a huge cupcake fan. She sat in a little cafe eating her cupcake (just the icing, actually).

And now, she is sitting playing with all her letters. She is loving learning the alphabet, and I am loving the process as well. Today as she was getting in her Maclaren stroller on the way home from school, she pointed to the M, A, C, L, and E and told me what they were. I was amazed, I had never shown her those before. For the E she said "Elmo!" Yes Lilly, "E" as in "Elmo."

One more thing: at every school Lilly goes to, she makes friends with the oldest most popular girl in the class? And then the other girls become friends with her because of this original friendship, and Lilly becomes really popular? It happened at her schools in New Zealand and Charlottesville, and it's happened again in New York. I don't know if Lilly is strategic or just charming, but I'm certainly proud (and a little jealous!) of my little girl. The kids in her class don't look at Lilly as being different (no more than any of the kids have similarities and differences); instead they are excited to tell me that they've been to Disney World "Just like Lilly!" or to share the sign language that Lilly's just taught them. "Look, Lilly just showed me how to sign a 'B' for my name 'Bella!' " Life's lesson once again, don't worry about Lilly. She will be just fine.

Monday, August 2, 2010

NYC, etc

I think I thought NYC would be a hard adjustment. Honestly, it isn't.

I mean, it is if we actually thought about it. We gave up our nice house, our cars, our small town life. We left our friends and coworkers who have accompanied us on our life journey for the past seven years. We no longer have easy access to Target and Sticks and the Downtown Mall.

NYC is so different. Mostly: it smells. Not constantly, but often enough to notice regularly - certain areas, certain times, certain people - really stink. It's not beautiful in a traditional sense - it doesn't have the small college town atmosphere of Charlottesville and the beautiful mountains of central Virginia; it especially doesn't have the beautiful nonstop water views that we had everywhere in New Zealand. And the people, generally, are different. Almost everyone is skinny (although I notice it seems the majority of them smoke as well!), many people look like they are straight out of a fashion magazine; and yet a few definitely look like their most recent shower was not this month. People walk fast, people curse loudly on the street, it is a very in-your-face environment.

And yet? We've adjusted well. And I think we like it. It's not "hard" the way Charlottesville and New Zealand were hard.

When we want dinner and don't want to cook? Just go downstairs and tons of restaurants just within a block or two. The best mango's I've ever had in my life (including the super fresh ones in Fiji) are from our local fruit street vender. Central Park is a few blocks away, and two other parks are within blocks. Lilly's school and Jon's work are a half mile away, and I work from home so it's an easy commute for us all. We see local family and friends enough that it doesn't feel as isolating as New Zealand and Charlottesville sometimes did.

I think I love New York, especially during the week. But I miss "normal" life on the weekends. I'd love to be able to get in a car and drive somewhere. Would love to get away from the crowds(although our neighborhood on the Upper East Side is never very congested, but many parts of the city are). I'd love to go to the grocery store and pay normal prices, and be able to buy a variety of items.

Some things in NYC remind me of NZ. The cost of living is high (but unfortunately there is no exchange rate to justify things this year!). It's not easy to go out and go shopping for everyday things. But New Zealand had a beauty to it that is missing from NYC, and I miss the laid back way of life.

I still miss our friends in New Zealand, and walking through St. Heliers, and Lilly playing on the playgrounds on the beach. I miss the wineries on the island across from where we lived. I don't miss the isolation.

I miss our friends in Charlottesville as well. While we have history in NYC because of family and old friends, we don't yet have new friends that we share common experiences with - so it will be nice when we have that family with a similar-aged child to Lilly who we can meet for brunch or on the playground on a Sunday.

It's funny to see Lilly adjusting. She's learning to walk on the NYC streets and keep up with the pace, although we still use a stroller for longer outings. She's developed a taste for NY hotdogs, but for some reason is not as interested in NY pizza. She knows the elevator system - L for Lilly (and Lobby) and that we live on floor eighteen. We count all the way up, and I swear she'll enter kindergarten next year not knowing there is a number 13, because our building doesn't have a floor 13. She knows how to buy a bagel with cream cheese from the street vender, and some afternoons after school I give her money and a bag and we go down to the fruit vender so she can buy whatever she wants, and then she proudly carries it back upstairs. And she can certainly hail a taxi.

All-in-all we are adjusted. 11 months to go, and who knows where we'll be then. It definitely is mind-boggling that we've lived in three so-very-different cities in the past three years; arguably we've lived in the top three most interesting places in the world to live.

Sunday, August 1, 2010

A Precious Gift

There is a lot to write - about Lilly, about New York City, about our daily lives and our adjustments. I need to post pictures. I need to actually take some pictures. Where to begin, I don't know, but I'll start writing again regularly soon.

But for tonite, I want to say how blessed and grateful I am that I have my Lilly. For the past week I've felt like I've had a split personality, of sorts, dealing with a loss. A girl that I've never met, but I followed the family's blog, passed away from cancer. She was in her twenty's and had Down syndrome.

I never knew her, and yet it's affected me so much. We have been lucky with Lilly's health, but with any child (or adult), Down syndrome or not, life and health are fragile. We never know what the future will hold.

I think of her mom. I haven't been in her shoes, but thinking about it, I can't breathe. I don't know how you go on when you lose your child.

I've never had a child who isn't Lilly, so I don't know for certain; but Lilly and I are intertwined so deeply. Since day 1, I have been Lilly's greatest supporter and advocate. I have loved her so deeply and so fiercely I would do anything for her. I know her thoughts and I know her needs, as it's taken longer for her to express them than the typical child, so I read her mind. And she knows me. She trusts me with her life, her future, and her desires. She knows I understand her when no one else does. She knows I will guide her and teach her and love her without condition. I know she will do the same for me.

I've never had a child who wasn't Lilly, and I know every parent has a special bond with their child. But I think there is something extra special when your child has special needs.

This week I've had Kristen on my mind. I feel for her family even though I don't know them. It must be so hard to lose such a precious gift.

So I am grateful for Lilly. So grateful for each moment. We don't take anything for granted. I am so proud to be her mom. This week she learned how to read, say and sign the entire alphabet, and she can now spell her name (out loud and in sign language). These are the days to remember.