A Sunday Afternoon

Lilly has a new friend. She and Lilly became friends on the playground and Jon and her dad did too; so now Lilly has an occasional little playmate for an afternoon out on the weekends. Yesterday they went to the Metropolitan Museum of Art (of course - where else do little city girls go for a playdate?). This little girl is 5 years old, attends one of the best private schools, is learning three foreign languages, is enrolled in classes at an elite ballet school, and is Lilly's new best friend.

There is pressure in Manhattan, according to the dad, to do everything and expose your kid to everything - it sets them up to then attend the best high school and attend the best ivy league university. Which will get them an amazing career and life, I'm sure.

These are the pressures in New York, and possibly everywhere, although not to this extent. Which is why the better schools we looked at for Lilly were not accepting in NY - they looked at a little girl with Down syndrome to be the black ink on their white party dress. And this is why the ballet class we looked into denied Lilly access because, as the teacher explained, the other parents would be mad because Lilly would ruin their recital if she didn't perform perfectly. From our limited exposure to the NY education system, at the preschool level, it's all about setting the bar high - and in turn weeding out those who can't keep up with the crazy pace. Integration for kids with varying needs does not exist here; kids like my Lilly are bussed off to special education schools - separate but equal, right?

I sound bitter, but I'm not. New York isn't for us, on a long-term basis, and we made our peace with that months ago when the system started unraveling on us. A little girl who had incredible experiences in normal preschools prior to this year was suddenly categorized as needing to be in a highly structured special education class in New York - it's not Lilly, it's the system here. And don't get me wrong, I like Lilly's new school, the teachers, the principal - but for Lilly at her age with her abilities, it's not appropriate.

(Side note: When we brought up the point during Lilly's IEP meeting that she's always done great in regular classes and had great results in evaluations until this year in NY, a professional said something along the lines of: "Well, kids aren't as smart in the South." Really, said the neurosurgeon and lawyer, both from Atlanta...)

So it is what it is, for the next 7 months, but it's definitely interesting as a cultural study. I think everyone in New York is under intense pressure. The parents are all working stressful jobs to afford everything they can possibly provide to their kids so that their kids can get into the right schools and become high power people with high pressure jobs.

Jon said to me last night, that the dad of Lilly's friend was talking about the pressures to have his daughter in all the right things, and it sounded to me a little bit like creating the perfect resume - but again, she's 5, so it sounds slightly ridiculous to know that she's fluent in Mandarin, Spanish, and Greek. Right?

And then there's Jon and I, merely struggling to find a decent school in New York where she wouldn't get physically assaulted and bullied (again), a school that believes that Lilly is a valued member of the classroom and has every right to be there.

In some ways, we have it easier. I don't know what we would have been like as parents if we didn't have a child with Down syndrome. (Note the distinction, that I'm not saying I don't know what Lilly would have been like if she didn't have Down syndrome - that is a thought path we've never gone down, for good reason - Lilly is every bit the person she was intended to be, and even now typing this I couldn't begin to imagine her even slightly different than the beautiful amazing little person she is, and I wouldn't want to anyhow.) But back to the point: for Jon and I, if we had been parents to, say, ourselves - would we have fallen into the trap of overachieving our child before he or she was even tall enough to ride a roller coaster? Would we be contemplating the most prestigious colleges before he or she were even born?

I don't know. Lilly set the standards for parenting pretty high for us, and her priorities include making sure that she is happy, super loved, and has the best of everything - meaning great family and friends, fun vacations, tons of laughing. I wouldn't say that we haven't gone overboard the same way these NY parents have in our own way - Lilly's been in her share of extracurricular classes - music, ballet, gymnastics, sign language, horseback riding - and she's definitely been spoiled in the travel department.

But I think the difference is, all we want for Lilly is for Lilly to be Lilly's best Lilly. (You can read that twice - I think it does actually make sense.) I will encourage Lilly in her dreams, pave the way, provide the assistance and resources, and be her biggest fan. But it's on her terms. And that, my friends, is the most beautiful part of the journey. The beauty of watching her blossom. The pride she has when she does something (these days, everything) by herself. She is life's greatest gift, and most important lesson.

So Jon and his dad friend watched Lilly and her best friend at the museum, and at the playground. They explored books and exhibits together, they went on the swings and the slide, and ran around laughing. They held hands walking together down the street.

A 5 year old little girl with all the pressures of the world on her shoulders, who someday, if her parents push her enough and society grooms her well, will be at that Ivy League school, probably with a Master's or Doctorate in something. And a 4 year old little girl who, contrary to society's limitations, will thrive and teach the world more than they could ever learn in books. Hand in hand, enjoying the city together on a Sunday afternoon, each appreciating the best in each other. Unaware that they have just made the case for the importance of inclusion.