Wednesday, October 15, 2008


When I was in NY a few weeks ago, I couldn't resist visiting this one place.

No, not the Statue of Liberty, Central Park, or even my favorite restaurant.

I wanted to visit ACDS, The Association for Children with Down Syndrome.

I became familiar with ACDS via some of the parents who have children that attend. They participate in a Ds support forum with me and I've always noticed the positive comments regarding this school. Apparently, it's the only one like it in the country. [I'd love to know if there are others.]

The school describes itself the following way:

ACDS provides a continuum of year-round programs and services that include diagnostic evaluations and treatment, early intervention, day care/ nursery, preschool, special education and clinical services for children, from infancy to age 5; individualized residential services (IRA) for adults, age 21 and over; and evening and weekend recreation and socialization services for children, age 5 and over. The agency also provides nursery/day care programs in an integrated setting, with typically developing children.

I wasn't sure that a visit would be possible due to the type of schedule I was keeping, but as I was returning to my hotel after visiting Hofstra University, I recognized the exit for where my aunt and her family used to live and quickly jumped off of the expressway. For the next few minutes, I sat in the rental car, trying to pry the desired info from my Blackberry. Where exactly was this place? What was the phone number?

I found what I needed, called, and quickly was connected to a Social Worker. She encouraged me to come by, stating that she'd be glad to show me around. Fifteen minutes later, I pulled into the parking lot.

The first thing I noticed while getting out of the car at this wonderfully average-from-the-outside looking school was the Down syndrome awareness ribbon on the back of the vehicle next to mine. It made me feel welcome. I decided then that I wanted one.

Inside, I met the Social Worker at the front desk. She was very friendly and proceeded to show me down one hallway and up the next, all the while asking me questions about Playette and admiring the photos I shared.

The classrooms held children of differing ages, abilities, diagnoses, races. There was one room that was set up like the ultimate jungle gym in order to work on gross motor skills (PT) and another that made me wish I was of the size that would allow me to swing and touch and feel all that was at the children's disposal. My absolute favorite was the room that held what appeared to be a group of 3-year-olds. There was also a lady sitting at a piano. As she played, she sang a song that told each student to rise from their seat, one by one, and join her in playing when she called their name. When their part was done, they took their seat and then it was the next child's turn. So, so cute. I could have stood there watching them for the rest of the afternoon.

When we returned to the front desk, I thanked everyone for their hospitality. I noticed then that they selling the DsA ribbons as part of a fundraiser, so I bought one.

I often think about my daughter's future. I worry about her education and how the moving around that is inevitable in the lifestyle we lead will affect her in the long run. I want a school like ACDS for her everywhere we go and I know that's just not going to happen. I want her to reach her full potential and I want that bar to be kept high. I want her to defy all of the restrictions, stereotypes, and generalizations that society placed on her the moment she was diagnosed with Ds.

It's a lot that weighs on me. I'm scared of making the wrong decision. I already feel bad for not teaching her more and can only imagine the kind of pressure that I may place on an actual teacher. Will I be patient enough? Will Playette even perform in a classroom setting? As it is, she keeps her skills held pretty close.

I don't know if and when I'll get answers to these questions, but I did want to take a moment to commend those that are out there who have "our" kids' best interest at heart, like the staff at ACDS.

Thank you.


hapagirlhapafamily said...

You are doing a great job momma! I know how you feel about moving. I have two typical kids and I feel the same way with them. Katie, who is 7, is now at her forth school and we still have 6 more years left in the Navy! I know...I remind myself that we are doing the very best for OUR kids. Just like you are doing for your beauty.

sheree said...

that is so cool! I wish there were places like that EVERYWHERE. Wouldn't that be wonderful.

I have no doubt, though, that you are doing a fabtastic job with Malea.

Hugs to you, my friend ;)

Lisa said...

That does sound like an amazing place.

Michelle said...

wow that sounds like a great resource to live near! It would be nice if other states caught on to what they are doing there.

I think as moms, and dads, we're always going to feel guilty about if we're doing "enough" - it's hard to find that balance with "work" and just being a family, you know?