Seventeen and a half years ago, our world was rocked when Kelsey was born.
Everything changed when she was whisked away to the neonatal intensive care unit (NICU) for observation. The obstetrician and NICU pediatrician came back to tell my husband and me that Kelsey had a pretty significant heart defect, and they suspected she had Down syndrome. Many questions swirled in our heads: Could her heart be repaired? Will she survive? What will our life be like raising a child with Down syndrome?
I really thought I knew disability. I thought I knew what it feels like to have a disability; I thought I knew how it is to navigate a world that often does not understand or appreciate the presence of disability. I thought I knew the feelings that a disability can bring with it: the hurt, the pain, the joy, and the delight. I really thought I knew it all.
17 years ago, I was blessed to give birth to my first child, Emir. He was diagnosed in utero with Down syndrome but it was not until the moment that I held him in my arms that I realized one of the most powerful truths I share with new parents of kids with Down syndrome: He was simply perfect, and even though, I tried really hard to see the syndrome, all I was able to see was the most beautiful child of the world: my child.
Hace 17 años, tuve la suerte de dar a luz a mi primer hijo, Emir. Le diagnosticaron síndrome de Down en el útero, pero no fue hasta el momento en que lo sostuve en mis brazos que me di cuenta de una de las verdades más poderosas que comparto con los nuevos padres de niños con síndrome de Down: era simplemente perfecto. Y aunque me esforcé mucho por ver el síndrome, todo lo que pude ver fue al niño más hermoso del mundo: mi hijo.
A guest blog by Courtney Hansen, Special Education Advocate
Courtney is a non-attorney special education advocate. She advocates at the local, state, and national level for disability rights, and blogs about it at www.inclusionevolution.com
I first shared our family’s story on this blog two years ago. A lot has changed since then, although many things remain the same.
My now 8-year-old twin boys, one who has Down syndrome and the other typically developing, are still included in the same general education class. They still love playing sports together, and our family still leans on our “village” of teachers, therapists, and friends to move forward. Still, this year’s COVID-19 pandemic has set us on a trajectory of change and uncertainty that often feels unsustainable.
NOTE: October is National Down Syndrome Awareness Month
By Chris and Rebecca Newlon
When Rebecca, my daughter who has Down syndrome, began kindergarten, I never dreamed that the day-to-day hammering out of details with her general education teacher would lay the foundation we would continue to utilize to this day now that Rebecca is a junior in high school.
Throughout October, the Office of Special Education and Rehabilitative Services highlighted aspects of disability awareness for national disability employment, dyslexia, learning disabilities, ADHD and Down syndrome.
I am the mom of two teenaged girls, one of whom has a disability.
My youngest daughter, Julianna, or Juls for short, was born with Down syndrome, and like many parents of a child with a disability, I found myself thrust into a whole new world. This world revolved around early intervention services, medical appointments, and learning as much as I possibly could about Down syndrome. I was discovering early-on that not only would I need to be Jul’s parent, but also her advocate.
Zoe – my color coded sixth grader with mosaic Down syndrome
By Suzanne Wingard, Director of Training, Family Connection of SC
Color has always been a part of organization in my life – from taking notes in school to sorting training handouts at work. It has visually simplified even the most complex tasks mainly because I am a visual learner. Luckily, so is my daughter.