A New Journey and The Really Big Thing

by Taryn Lagonigro

Rhea turns 3 in March, and we have started the process of preschool transition. This is a journey that has been on my mind since Rhea was born, and what once felt so far off is now racing towards me faster than I thought possible. The “in a couple years” is now.

I am approaching this transition planning with a healthy amount of hope and fear. I am not coming into it expecting a negative experience, but am educating myself and planning to be as prepared as possible. And oh what a strange feeling it all is.

It’s almost like this is the first time that Down syndrome will feel like a Really Big Thing. We’ve gotten to live in a bubble these last few years where Rhea is mostly just Rhea. Yes, there are things that are different about her life than her sisters’ at this age - therapies, appointments, etc. But for the most part, Down syndrome is just one little part of the everyday.

Now, as we start to map out her educational future, I worry that Down syndrome will come first. Will Rhea’s Down syndrome result in an automatic decision about the kind of student she is and the peer she will be? Will Down syndrome be a reason to say “no”?

I worry that an extra chromosome is about to become a Really Big Thing.

I’m not naive to the fact that throughout her life, people will see Down syndrome first when they look at Rhea. Where many disabilities are invisible, she wears hers with some features, including her big almond eyes - the prettiest eyes on the planet, if you ask me! Someday her disability may show in other ways, and that’s ok. We certainly aren’t ashamed of Down syndrome. The issue lies when someone decides what that means without knowing her - when someone makes a judgment call about her capabilities because they know she has a disability. Imagine if I saw someone in a wheelchair and started speaking loudly to them like they couldn’t understand me. I may be able to see their disability, but I know nothing about it. I would hope that people wouldn’t decide what someone with Down syndrome is capable of just the same.

But today, I will walk into our first meeting just like how I am asking Rhea to be treated - with respect and an open mind. I’m ready to talk about the Really Big Thing but am hopeful that today is a positive first step in Rhea’s educational career.

Wish us luck!