Friday, May 7, 2010

The Journey

I don't have to tell you how amazing Lilly is; if you've paid attention over the past couple years you know that I am such a proud mom, bordering on obsessing on Lilly's attributes. She is the perfect daughter in every way.

And she has had a great life, although we don't make it easy on her with moving so often for Jon's career. But all the worries that I had at the beginning were fruitless; she is accepted by society, she is loved by our friends and family, she is appreciated in her preschool class, she is discovering her talents as a ballerina and equestrian, she is motivated to learn new skills, and she is beautiful and bright and sweet and funny. But you know this, we all know this.

Last week, two things happened. The first was, someone close to me mentioned a school with a special education program, inferring that it's the kind of thing Lilly would be in if she were school aged. I did a double take - but Lilly is in regular daycare preschool right now; of course if her needs were met better by special ed we would go that route, but wouldn't we mainstream her until or unless we found that she didn't do well? What makes you think she couldn't handle regular kindergarten and regular school?

A few minutes later, ironically, another comment- and this one hit me like a punch in the stomach. We were introduced to a group of kids, and a 9 year old glanced over at Lilly and said "Is she in special ed?"

My heart dropped for my little girl. Of course I am saying there is nothing wrong with special education, it may be a part of Lilly's life as she grows up, and I know it meets many needs. But what made me so sad for Lilly is that this kid looked at my daughter, knew nothing about her, besides her face, and categorized her and dismissed her. She was no longer an adorable precocious three year old; she was someone who should be separated from the group.

I don't often think of these kinds of judgments that people might make of Lilly. We have been so fortunate in facing positivity when it comes to our daughter. In school, both here and in New Zealand, she attended regular daycare, where they held the bar high for her and Lilly rose to the occasion. We've done ballet, gymnastics, and music classes, for typically developing kids. She's had all kinds of friends, both with DS and without. For the record, I don't think there is anything wrong with DS or special needs generally; but my point is more that people with special needs have a place in mainstream society if they choose to be there. And in Lilly's situation, it is in her best interest to be part of the group.

I've recently been keeping up with a blog written by a mother and daughter. The daughter is an amazing 20 year old writer - and did I mention she has Down syndrome? And the mom is such a caring mother and advocate, and I see myself in her shoes as Lilly grows into an adult. Yesterday the mom wrote this . I so appreciate her candor and drive when it comes to fighting for what her daughter deserves - in her education, in her career, in her life.

It is not that I want my child to blend in and not have the chromosomes that she was born with; it is moreso that I want her to be fully included and appreciated exactly how she is. Which also means not prejudging her skills or her options before she can prove exactly what she is capable of. But more than anything, I am thankful for the journey that we are on; I look forward to being Lilly's advocate, because there is no one that deserves life's amazing opportunities more that Lilly.

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