Fall/Winter Catch Up

Life is busier than ever and I've failed to post any pictures of some other things that are still "firsts" - or "seconds" (but the first time really participating) for Emily.   This month, she had a Christmas performance at school, a County/IEP evaluation, Christmas, one last quick family get-away, a move to a big-girl bed, and an early family birthday celebration.  

Emily continues to do so well and when I have a chance to step back from the daily chaos, I'm reminded again and again how very lucky we are to be a part of her life.  She is amazing us right and left and she fits in so well to our family.  People sometimes ask her how her English is coming along and we have to laugh because she NEVER STOPS TALKING!  My Dad calls her "radio" because she talks non-stop.  Nobody who met her would believe that she didn't hear a word of English until she met us at 18 months old.  She speaks in compound, 10+ word sentences, uses pronouns and other complex parts of speech correctly, and "gets" things far beyond her years.  I thought my boys were bright (biased mom), but Emily is really much more ahead of things than they were at 2 years old.  I think they are a big reason for this as she greatly benefits from being around older children at home and at school.  As the sister of two big brothers, her vocabulary also includes a lot of "poop" related words.  She is also obsessed with porta-potties and spots them everywhere.  The boys wanted to count Christmas lights on the way home from a restaurant the other night and she wanted to count porta-potties (lots of construction going on along our typical routes).  She wants to be just like her big brothers.  Mostly, this is a positive thing.  But, the poop-related conversation and general loudness are probably slight negatives. :)

She is the youngest in a 3 year old class at her preschool (I pushed for that) and she is doing great.  She has learned to identify some capital letters and calls herself the "letter spotter" because she can find the letters E and A (her initials) all over the place: on Exit signs, toys, bulletin boards in class, catalogs and magazines, books, etc...  She has also learned to write a few capital letters.  We started with "her letters" to get her interested and, for now, she is into it and is wanting to know more. 

Video of her first effort at writing a capital E:

She really looked forward to Christmas this year and considered herself the monitor for Santa's "naughty list."  At breakfast one morning, I overheard her tell her brother that since he "tooted on the sofa" (yes - such is our life), he was going to the naughty list and "losing all electronic privileges." (you'd think she had heard that before...)   She wanted Santa to bring her a toy cat that wears glasses and a pink scooter. She must have been good because Santa followed through with her wishes!

She had her first Christmas performance at school in mid-December and she did so well!  She was the line leader for her class and went up the steps with no problem.  She sang the songs and smiled and was so mature.  We were so very proud of her!  She memorized words and motions to several songs and was so confident.  She walked right up the steps with no rails and looked out at the crowd.  Nobody would have ever known that she has any vision issues.  It's sometimes so crazy to think that little things that we take for granted - like our children's ability to sing about Jesus' birthday in a Christmas show -- are  not even in the realm of possibilities for children in orphanages.

We had a family party (early) for her 3rd birthday and iced lots of cupcakes (the orphanage reports before we went to China said that she liked sweets.  That's still the case!)   She keeps saying that when she "grows huge" and "turns 3," that she can do all sorts of "big girl" things.  I guess we'll see.

She had an evaluation by the County to see which services she qualifies for at age 3 in January.  Not surprisingly, she qualified only for vision services.  She will begin working with a TVI (teacher of the visually impaired) in January for 30 minutes each week.  The current goals are for her to work on tracking from left to right (pre-reading).  (People with albinism have a difficult time getting their eyes to work together (binocular vision).)  She will also work on finding details in pictures with a lot of "visual clutter" (lots of drawing and details and colors, etc...).  The TVI who did her evaluation told us that she believes Emily's vision to be in the better range for someone with albinism.  We should be able to find out for sure (with an acuity number) when we see the ophthalmologist in January.  For now, we're so pleased (really astounded!) by her progress and we are really glad that we had her evaluated early and got her "in the system" so that she can begin work with a TVI as soon as she turns 3.  We want her to have all the tools that she'll need so that she can excel at anything/everything she may choose to do and so that she is not frustrated by reading and other school endeavors that are more difficult for someone with a visual impairment.

Too many words.  Pictures are better!

Fall things

Fall brought football, brothers' soccer games, outside play time, Halloween  (and she got it this year), friends' birthday parties, a fall break beach trip, and lots of other fun...

My not-so-tiny Dancer

Since Emily is in a three year old class at her school (even though she won't be three until January), she is eligible for ballet and tap lessons.  I checked in with the albinism moms (and a few dads) group to inquire about their children's experiences with dance classes, and the responses were overwhelmingly positive.  I signed Emily up for the class.

I do not want her to get any special treatment.  She is attending a mainstream preschool and I want her to do - or at least to try - anything and everything that any of the other children try.  But, I did call the teacher in advance just to explain about albinism and low vision and to suggest that Emily will do best if she stands near the teacher for instruction on dance moves.  The teacher was lovely and said she was very excited to have Emily in her class (I hope that holds true after she meets this opinionated girl!).

So - here she was for Day 1 of class.  My tiny (32 pound) dancer... so happy and ready to dance.  I love her exuberance and her curiosity about so many things.  She has such a positive attitude and is up for any challenge.  I want that always to be how she approaches life. 

I mean... is this the cutest thing ever, or what?  :)

Opening Hearts and Minds

I've talked before about how many in China view children/people with albinism as being cursed.  I've also read horror stories about how people with albinism (especially children) are hunted and killed in other countries.  The myths and stories and outdated views about people with albinism are terrible. 

 

While people with albinism in our country, thankfully, are not hunted or viewed as cursed or shunned, I still think that most people have little knowledge about albinism or about people with albinism.  Most people don't really know what someone with albinism looks like (they always think that they have red eyes).  Many people aren't familiar with the possible vision differences someone with albinism might have.  And still others hold incorrect assumptions about the ability of someone with albinism to go outside or to play in the sun.   Emily and I have found this to be true when we've been out and about to stores, to church, to school, etc... -- and we live in a major metropolitan area where people are generally well-educated and well-traveled (not that any area is immune to a lack of knowledge or to misinformation).

Most people we've encountered have never met or even seen (outside of a movie) anyone with albinism.  Most are surprised that Emily's eyes are blue.  Sadly, most seem surprised that she's a beautiful (yes, I'm biased) girl.  Some seem surprised by how "normal" she is and how she does anything any other little children do.  I've viewed our encounters as positive because we can show people what having albinism actually means vs. what they might have just heard or, worse, seen in a scary movie.  I really believe that most of the people who have crossed Emily's path (at church, school, Target, grocery stores, soccer fields, theme parks, etc...) have departed better educated about albinism.  I hope that their having met Emily will favorably color their future impressions of any other people with albinism they might one day meet.  Although I'm sure the day will come, we have - in our 14 months home - not really encountered anyone who has said anything negative about Emily or about albinism.  (With the exception of one older neighbor, at a "block party," who told me that the only person she'd ever seen with hair as white as Emily's was (theatrical whisper) "an albino - who had red eyes and couldn't see at all!"  I highly doubt that she ever knew such a person, but I chalked this up to this woman being at least 90 years old.  Plus, it didn't even register with her that Emily has albinism.)

On our trip to Disney, we went to Epcot one night and ate at the China pavilion.  The food was great and the kids loved it and it was fun to show the boys a little of what some parts of China had been like last year.  Our waiter was from (so said his Disney "Cast Member" name tag) Guangzhou (it actually said Canton, the former name for Guangzhou).  When we finished eating, he asked if we had ever been to China and was surprised when we answered that we had been to China and had spent a week in Guangzhou.  He asked why we were there and we told him it was to adopt Emily.  He almost dropped his tray of plates as he stared at us and at her.  He finally said, "She's Chinese?"  When we said yes, he stammered, "But the white hair?"  Justin explained that she has albinism.  His response was "Oh no, I'm so sorry."  This was said more in a way that you would say you were so sorry if someone told you their child was terribly sick or had been in an accident vs. an expression of disgust.  We said, "Oh no, there is nothing to be sorry about.  She is wonderful!"  He continued to look at her and then said, "And she's normal? She's really OK?"  We said, "Yes - more than OK.  She is smart and funny and totally normal and is having a wonderful time at Disney."  He smiled and took away the plates. 

At first, this made me mad and then it made me sad.  But, the more I continued to think about it, the more I realized that the longstanding views (in China and elsewhere) about people with albinism are based upon a complete lack of knowledge or information about albinism.  I hope that this waiter will never look at another person with albinism in the same way.  If he sees someone else, I hope he remembers Emily - sitting with her family at Disney and happily eating her food, coloring on the placemat, and chattering on about Mickey Mouse.

There is always fear of the unknown or of things or people we don't understand.  And, if you grow up in a culture where certain types of people are shunned or are not talked about or are viewed as cursed -- and you never actually meet someone like that, you might just perpetuate those views -- even if you are not trying to be mean.  But, I've found that it's almost always the case that when you meet an actual person with a certain need or disease or physical challenge -- or even a person who is of a different religious background or who is from another country or who holds different political views than do you, etc..., and you learn about them, you start to find that your old, uninformed views change.  You start to see him or her as a human being with a heart and a family and with hopes and dreams and fears just like you.  Everybody is someone's daughter or son or father or mother or friend - a life to be respected and to be treated with grace and with kindness.   

With knowledge and an open heart and mind, everything can change.  So, Emily and I will keep on getting "out there" and trying to change the world where we can.

  

Emily's first trip to DISNEY WORLD

We are a Disney-loving family. 

I realize that there are some people who hate Disney and who avoid it at all costs.  And, there are others who love it and go every year.  We're in the "love it camp - even though we don't go every year.  Pretty close though...  The boys have been 3 times - every two years so far.  This August was Emily's first trip to Disney and our first big trip as a family of 5.  We flew there even though it's not a terrible drive from Georgia.  And, what a difference a year makes for a plane ride!!  Emily was calm and nice and sat in her chair quietly and drew pictures or watched her DVD player.  A far, far, far cry from our terrible, nightmare/disaster of a flight last year in China.  (see post about that here: http://1morepiece.blogspot.com/2014/07/first-airplane-ride-nightmare-for-all.html)

Although I know Emily is always up for a trip and is always ready to do anything with her brothers, I did have some vague worries about how she would react to Disney, whether she would be able to see everything, how hot and sunny it might be (very), and how and whether she might like the rides.  Unlike most 2.5 year olds, she isn't completely immersed in the Disney princesses.  This is a function both of the fact that she doesn't really watch TV (Our main TV is high on the wall in the den and I think it's just too far away for her to want to pay a lot of attention to it.  We will have to rectify that in years to come.) and that her brothers are not into Disney princesses.  But, no matter (and we were spared from the long princess lines and from the princess boutiques and souvenirs), she loved Mickey and Minnie and everything else. 

She rode rides (including the "kiddie" roller coaster because she is 37 inches tall), watched parades, danced with characters, took pictures, played in the pools, sweated the days away with the rest of us, waited in lines, made "friends" with people on the Disney buses (she loves to say "hi"), took some naps in the stroller, and chose as her souvenir a red, glittery Minnie Mouse purse.  Who doesn't need one of those?  Her favorite rides were Dumbo and Small World.  She took it in with the same wonder and awe and happiness that any child does on his/her first trip to Disney.  She stayed up late and ate ice cream and sang and danced and generally had a wonderful time!

In case anyone wonders whether a child with albinism can enjoy Disney in August, I think these pictures show that the answer is absolutely YES (but everyone will be really sweaty all the time)!  We used lots of sunscreen and hats and glasses and then we otherwise just tried to enjoy every minute of our last hurrah of summer.  The kids (with Emily leading the band) can't wait to go back!