I Am Aware: Thoughts on Down Syndrome Awareness Month

October is an important month in the Down syndrome community, a time to promote awareness and acceptance by educating our peers and sharing our stories about our loved ones with Down syndrome. I’ve seen many essays and social media posts dedicated to Down Syndrome Awareness Month; so many friends and fellow advocates are doing a wonderful job informing their greater communities about what Down syndrome is. Having celebrated DSAM for many years now, I was struggling with how to promote awareness this month. After much consideration, I discovered that I am very aware of Down syndrome. I mean really, really aware. Because so many facts and advocacy tips are already circulating, I’ve decided that my contribution to Down Syndrome Awareness Month lies somewhere in my own personal experiences.

I am aware that building awareness and acceptance of Down syndrome is a responsibility 365 days a year, not just 31 days in the month of October. Many people have shared that they celebrate their loved ones with Down syndrome every day of the year, so they don’t see the importance of doing it just one month, and I agree with that…to a point. It takes a conscious effort to carefully and consistently educate our families, friends, educators, and community members year round so that this information becomes second nature, and not just something that is pointed out one month a year. However, upping our game during October is a great way to increase our advocacy skills and highlight some major elements and key concepts that we want to share.

I am aware that inclusion is not a “one size fits all” concept. When I advocate for inclusive opportunities for my son, Alex, or share my thoughts about inclusion, I inevitably hear something along the lines of “that would never work for my child.” And I have experienced that, too; after reading about different circumstances, I’ve often thought “that’s amazing…but it would never work for Alex.” And that’s ok! I wouldn’t want an opportunity to not be available for someone else because it wouldn’t work for my family, nor would I want to see something forced on someone else if it wouldn’t be appropriate. Inclusion should be a fluid, customizable concept that benefits an individual, and I think that special education would best function in this manner as well. Supports should look different, because they are serving different individuals, but the big picture should be the same. It is challenging at times, but most certainly worth it.

I am aware that many people have good intentions, yet low expectations. My son has met many wonderful people in his life, most of whom only wish the best for him. I’ve noticed, though, that many of us need to raise our expectations in regards to individuals with disabilities. These individuals can and will accomplish extraordinary feats, but we may never know exactly what they can do until they are encouraged to try and then fully supported.

I am aware that all of my kids are awesome. Our family dynamic is different, and because of that, I’m watching my kids become amazing people. They began learning, at very young ages, that they can advocate for their brother, and other individuals, with Down syndrome…and that their voices matter. I believe that they will only continue to grow as advocates, and that this will benefit them (and all those around them) for the rest of their lives.

I am aware that I am stronger than I ever thought possible, and I have Alex to thank for that. Like my younger kids, I am finding my voice as an advocate, and realizing that my part in this story is a powerful one that can help others. Learning how to advocate is empowering, and knowing that I am making a difference is rewarding.

I am aware that there is a lot of work to do. Advocacy doesn’t end.  I don’t think there will ever be a time when I will sit back and say “Yep. I’ve done all I can for my son, and there’s nothing left to learn.” It just won’t happen. We can all do so much to help our loved ones with Down syndrome flourish, and we can always find ways to help build awareness and acceptance in our communities.

I hope you’ll join me in taking the time to build awareness and acceptance of Down syndrome this month, and also learn how to best educate, support, and include individuals with Down syndrome well after the calendar flips to November.

My reason to celebrate #DSAM