It is Down syndrome awareness month and I have to tell you, sometimes I wish that I could be a little less aware of Down syndrome. Some days I don't feel like being an advocate, or a mama bear or a warrior mom. Some days I just want to be a regular old mom.
This weekend is my birthday and I will be spending it at a leadership workshop on how to advocate for people with disabilities.
The next weekend I'll be at the Buddy walk, listening to speeches about Down syndrome and walking with my son Benny.
Personally I would rather people forget that Benny has Down syndrome at all. I wish they could just see him for who he is - a bright and bubbly preschooler.
But even though I'm tired of talking about Down syndrome I keep on doing it. I keep on writing blog posts and sharing in real life and on social media because every day I see how much prejudice there still is against people with Down syndrome.
Disabilities are the last acceptable prejudice and I want to change that in my lifetime. For Benny. And for all of the many people who have disabilities. And so I keep soldiering on this uphill battle, thankful to all who came before me and paved the way for me and my family.
Recently I encountered this prejudice while looking into kindergartens with my friend who has a typical son the same age as Benny. The experience was heartbreaking.
A woman giving a tour at one middle of the road charter school was stumped when my friend asked what kind of services they had for students with special needs. She had just finished waxing poetic about the self-contained classroom for gifted and talented students (GATE) but stuttered "special needs?" and looked completely perplexed as to why we would ask about something so obviously horrifying. (Nevermind that services for gifted students are also under the umbrella of special education.)
"My son has Down syndrome" I explained.
"Oh, we've never had any students with Down syndrome. I don't know what we would be able to provide for a student with Down syndrome." she said looking absolutely petrified at the thought of my son and his potential extra needs coming to her school.
Defensively I told her that I had visited our designated school and that it was far superior to this one, to which she looked relieved and told me that I should "just keep him there".
The next day my friend called me ecstatic about a public Montessori school he had just toured. I listened excitedly as he talked about the open classrooms with multiple grades, the project based learning, the GATE certified teachers in every classroom and the violin training every student receives. Then he mentioned that he had asked and the school didn't have any resources for kids with special needs like Benny.
I got off the phone and cried. I wanted to be happy for my friend, I really did, but in that moment all I could feel was heartbreak that my son wasn't welcome at that school.
And that is what discrimination looks like. These publicly funded schools are actually required by law to provide a free appropriate public education to all students regardless of their extra needs, but they don't want to. So instead they discourage parents of children with disabilities from enrolling their children, despite decades of research that shows undeniably that an inclusion model that provides appropriate accommodations is far superior for every student in the classroom.
Last night the fact that my son is being denied the same opportunities for kindergarten as his peers made me cry.
But tomorrow I will not cry. Tomorrow I will arm myself with an idea. The IDEA specifically, the Individuals with Disabilities Education Act. And I am going to go to the district office and I am going to give them a piece of my mind.
This is what happens to parents of kids who have Down syndrome. You get tired of talking about it. You get tired of bringing everyone's awareness to it. You wish everyone would be less aware of it. But then somebody discriminates against your kid because of it, and they awaken the advocate, the mama bear and the warrior parent inside of you. Soon they will hear your roar and they will know no mercy.
Since becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy!