My Feelings about Down Syndrome Awareness Month as a Sibling

October is Down Syndrome Awareness Month. Because I follow lots of special-needs parents on social media, my timelines have been filled with facts and fun stories about friends and family members with Down syndrome.

Last week on my Instagram account I even shared my own story, including these texts from my big sister:

She and our parents were visiting our younger sister in Louisiana and I was very surprised to hear from her so early in the day. She usually sleeps until noon (she stays up until after midnight, so it all evens out). It was so typical of her to spend her early hours texting “people that I know and love” before she went back to sleep. I don’t know how many texts she sent because that’s a long list of people. I’m reminded of that each month when she buys birthday cards for friends and family members. She even slips money into some of those cards.

The posts I see from most parents during Down Syndrome Awareness Month are about inclusion and bright futures, like how people with Down syndrome can attend college and get married. That is true. They can. My life-long circle of friends includes many people with Down syndrome. None who I can think of went to college, but one is married. These options are possibilities. But they aren’t promises.

I understand and appreciate this evolution of goals. When my sister was born in 1977, my parents’ dreams were for her to attend school and get the services she needed. Above all my mom prayed for her speech skills, knowing her life would be easier if people could understand her. And those dreams came true. She attended school and did get the services she needed. She has lots of memories of the friends she made—with and without disabilities. Her speech is clear and easy to understand for most people she talks to.

People with Down syndrome here in the U.S. can easily achieve the goals my parents set for Syble thanks in part to the work done by my parents and thousands of others throughout the decades. I’m so thankful for them. Here’s what else I’m thankful for:

My big sister is a gift to our family without reaching every milestone and goal our parents may have wished for.

She didn’t go to college and she isn’t married. She can’t ride a bike or drive a car. But she is an amazing aunt, a valued church member, and a volunteer at our local food pantry. She’s a Days of Our Lives super-fan and always remembers to say thank you to whoever bought dinner when we eat out together. We are currently in a Biggest Loser weight loss challenge because she wants to lose a little weight before she turns 40 this year. She also wants to drink multiple Cokes a day, so I may have a chance at winning if I can lay off the Dr Pepper. As she has grown and matured, so have my parents, and their goals for her have evolved as well.

“Is she happy?” is the question my parents ask as they care for her, and it’s the same question that guides my parenting of James.

During autism awareness month I could share posts about how people with autism go to college and get married. It’s common in the autism world, of course. But those milestones aren’t in James’s future. And I know that’s ok because I see it every day with my sister. So the pressure is off him and me. I don’t put him in inclusive classes that stress him out. I do let him wear his favorite outfit as often as possible. Of course I pray he adds more words to his vocabulary every year and may some day be able to read and write so he can send his brother texts, but if it doesn’t happen, that’s ok too.

Down Syndrome Awareness Month is a wonderful opportunity to celebrate the diversity of gifts and abilities within the Down syndrome community, not a time to push them into the mold we’ve created as the ideal for all people.

Syble is enough. James is enough. And I’m thankful for them both.

1 thought on “My Feelings about Down Syndrome Awareness Month as a Sibling

  1. Oh my goodness, this blessed me to read. One of my pastors has adopted two precious boys from overseas, both with Down Syndrome. I’m sending this to them. Our worth is centered on Who made us, not what we do!

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