Most people aren’t aware of this, but October is Down Syndrome Awareness Month.

Credit: specialedpost.org

During the month of October, we celebrate people with Down Syndrome and make others aware of their abilities and accomplishments. It’s not about celebrating disabilities, but rather celebrating abilities. While the celebration is more about awareness, it’s also about acceptance.

This celebration isn’t as well known to some, because it is often overshadowed by more publicly recognized October calendar events. However, I could not allow the month of October to end without acknowledging its existence.

Down syndrome (DS) or Down’s syndrome, remains the most common chromosomal condition diagnosed in the United States. Years ago, it was common practice for some to institutionalize those born with Down Syndrome. Recently, a mother of a Down Syndrome child stated the following in an article, “I wish I’d aborted the son I’ve spent 47 years caring for. “

Many people lack basic understanding about Down Syndrome:

• 38% of Americans know someone with Down syndrome.
• Each year, about 6,000 babies born in the United States have Down syndrome.
• The population of people with Down syndrome in the U.S. has been estimated to be over 400,000. However, this number is derived from faulty assumptions – the total population from the 2000 U.S. census, 281.4 million people, divided by the most current frequency of live births, 691 equaling 407,236. Unfortunately, this technique takes no account of the gradual increase in frequency or the increase in lifespan of people with Down syndrome. Therefore, we don’t actually know how many people with Down syndrome currently live in the U.S. Some estimates put the worldwide population of people with Down syndrome at more than 6 million. More research is needed to determine whether this number is accurate. Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today.
• Some people with Down syndrome live independently, or in an assisted living arrangement. However, a larger number of them have a dedicated caregiver, who oftentimes is a family member.

Speaking of caregivers, did you know that November is National Family Caregivers Month?

Eye-Opening Statistics:

•  65.7 million caregivers make up 29% of the U.S. adult population providing care to someone who is ill, disabled or aged.
• 52 million caregivers provide care to adults (aged 18+) with a disability or illness.
• 43.5 million of adult family caregivers care for someone 50+ years of age and 14.9 million care for someone who has Alzheimer’s disease or other dementia.

These numbers will continue to grow, as the life expectancy of U.S. adults in general increases. In fact, more than 10 million Americans have purchased Long Term Care insurance policies. Many more find the premium unaffordable, hence leaving the responsibility to a family member.

However, this video demonstrates why more and more people who have the financial means to do so, are opting to purchase this coverage.

Many of you reading this post are caregivers, whether it is on a full or part time basis. National Family Caregivers Month – again, another overshadowed celebration, as it competes with two major U.S. holidays.

My primary purpose for writing this post is to enlighten people about the existence of these two celebrations; however even more importantly, to recognize two very special people who are linked to these two often forgotten celebrations.

When Tonia was born with Down Syndrome, her parents were told that she wouldn’t live beyond age 12. Because I don’t have her permission to conceal her current age, let’s just say that she continues to prove the medical professionals wrong – by about three decades.

Happy Birthday Tonia

She’s had some medical challenges over the years and since birth has had some mental limitations. 39.4% of individuals who are Down Syndrome, are in the mild intellectual disability range of 50-70 (average IQ in the general population is 70-130). However, she holds a job that she works five days a week, is a registered voter, is on a Special Olympics affiliated bowling team, has many friends and tends to her own basic personal needs. To say that she loves to dance is an understatement. When the music comes on, she pretty much becomes Tonia Unplugged.

Like most Down Syndrome individuals, she has a heart of gold, and you will always find her in the happiest of moods.

Forever Smiling Tonia

Sadly, four years ago, Tonia’s mother, who was her primary caregiver her entire life, died suddenly. Needless to say, this was a traumatic, life-altering event for Tonia and her entire family. There was always an unspoken expectation that her oldest sister Elizabeth would take on primary care responsibility for her should something happen to their Mom.

Ironically, their Mother’s death occurred right around the time that Elizabeth was planning to retire, after a stellar 25 – year career in law enforcement. These were to be her “glory years” and now her plans would certainly be altered. She has in essence taken on a new job, at a time when she should be lounging on a beach and living virtually schedule-free. I applaud Elizabeth for her courage and for her commitment to her Mother’s wishes, as I am certain she is looking down from heaven, filled with gratitude for her sacrifices.

Elizabeth In Uniform

During the month of October, I celebrate all Down Syndrome individuals, but specifically, I celebrate Tonia. I am grateful to have known her for her entire life and she has proven to be one of the most genuine people with whom I have crossed paths.

Tonia and Elizabeth

As we prepare to enter the month of November, I celebrate all caregivers, but specifically, I celebrate Elizabeth. I commend her for her strength and for for being a dedicated caregiver and a great sister to Tonia.

I am proud to celebrate them both for being great human beings worthy of this honor, especially during these two months set aside for special recognition.

More importantly, I thank them both for allowing me to honor them, and having the distinction of being their sister.
I love them dearly, and I am truly blessed to have them both in my life, every month of the year

Join me in celebrating Down Syndrome and National Family Caregivers Awareness.

Do you have someone that you would like to “Shout Out” in celebration of either Down Syndrome Awareness Month or National Family Caregivers Month? Feel free to share with others here at JDJ how either circumstance has impacted/enriched your life.

Additional Resource:

Dental Care Guidance for Caregivers of Patients with Down Syndrome