No one said it would be easy to raise a child with Down syndrome. And it definitely isn’t. But in the five years of raising our daughter, Claire, it has been rewarding beyond measure.
Claire has brought so many amazing things into our lives. I could go on and on about the people we’ve met, the happiness she’s created, and the lessons she’s taught.
Since Down Syndrome Awareness Month encompasses the entire month of October, I’d love to share more about the diagnosis and some ways to boost inclusivity and acceptance.
Facts About Down Syndrome
Fact: There are health conditions and disorders that are more likely to occur in children with Down syndrome. Here are a few: heart defects, vision issues, hearing loss, thyroid disorders, and leukemia.
Our Reality: Claire was born with an atrioventricular septal defect (AVSD); this was a terrifying bit of news to learn after also being surprised with her Down syndrome diagnosis at birth. She needed to have open heart surgery to fix this problem when she was 3.5 years old.
Claire has been taking medication for hypothyroidism since she was six months old. And she now gets routine bloodwork to check her thyroid and to check for leukemia. The list of specialists she treats with include: Endocrinology, Cardiology, Ophthalmology, ENT, and a wonderful and conscientious pediatrician.
Fact: It is called Down syndrome. Down is capitalized because it is the last name of the gentleman that discovered Down syndrome. It is not Down’s syndrome.
Our Reality: Claire has Down syndrome. She is not a Down’s kid. She is not the Down’s girl. Because language is powerful, *person-first language* is highly appreciated. Person-first language emphasizes the individuality, equality, and dignity of people with disabilities.
Fact: In 1983, the average life expectancy of an individual with Down syndrome was 25 years. Now the average life expectancy is 60 years. This increase is primarily due to the end of institutionalization of babies with Down syndrome and a greater understanding about the health conditions caused by the extra chromosome.
Our Reality: I cannot fathom, for one second, what life would be like without Claire. The mere thought of having to send my child away for any reason is excruciating. But what kind of world would this be if we weren’t exposed to those who are different?
How to Be More Inclusive and Accepting
Be open with your children.
It’s okay to explain to your kids that kids with Down syndrome have a harder time talking, or doing most things at peer level. “She can’t do it yet, but it’s okay! Here, let’s do this instead.”
Yes, we will need your help. The best moments have come when friends have assisted in their kids being inclusive. However, the hardest moments are when a friend chooses to ignore their child being exclusive or asking questions about Down syndrome.
Talk about differences often.
My favorite books that discuss difference include:
Think about volunteering at GiGi’s Playhouse!
We always hear people hype up volunteering saying we should give back to the community. But it goes much deeper than that. Within the larger community as a whole, there are smaller communities. Each volunteering opportunity gives you a chance to learn about a community and culture that you might not know a lot about.
To learn more about Claire and our family’s experience, see my personal blog. Or head to my Instagram where she’s the frequent star!
