How to support families of children with Down syndrome

October is Down Syndrome Awareness Month. According to the CDC, Down syndrome remains the most common chromosomal condition diagnosed in the United States. Each year, about 6,000 babies born in the U.S. have Down syndrome. This means that Down syndrome occurs in about one out of every 700 babies.

How to support families of children with Down syndrome

Eliana Tardio has two children with Down syndrome, Emir and Ayelen. Eliana’s goal as a parent and professional is to make society at large aware of the abilities of people like her own children, who live with a disability. She started her advocacy career thirteen years ago with the birth of her son, and her life mission was strengthened when her daughter was born and diagnosed with the same condition three years later. She works with the Family Network on Disabilities to support families of students with disabilities in Florida, and is a well-known social media influencer and activist who provides support and education to over 300,000 people who follow her through social media, and to more than 5 million yearly visitors on her sites, and (which is in Spanish). She graciously accepted sharing with our readers how we can all best support families living with Down syndrome.

Viva Fifty.-What is the goal of Down Syndrome Awareness Month?
Eliana Tardío.- The goal of Down Syndrome Awareness Month is to create an opportunity to celebrate people living with Down syndrome as we highlight their abilities and similarities with other people. Down syndrome is a common condition, but that doesn’t make it easy to raise a child with Down syndrome or to grow up with Down syndrome. Sadly, along with the label comes conscious or subconscious prejudices that limit the future and possibilities of people living with this condition. For example, by portraying people with Down syndrome as eternal kids or “different” or “special” beings, we stereotype and limit their opportunities to develop into the human beings they really are and could be.

Viva Fifty.- Which are the most common prejudices you have faced and still see in our communities?
Eliana Tardío.- I think one of the most limiting prejudices that is still alive and hurting people with Down syndrome is the tendency to believe that, because of their diagnosis, they are all one and the same. Generalization deprives people of their individuality and, therefore, of opportunities to develop their personal abilities.

Another situation that I consider extremely important is the need to recognize low expectations that many times are hidden under “sweet” phrases that people are used to saying. The confusing part about this is that as communities, we are all aware of the bad words or socially inappropriate behaviors towards people with disabilities; however, we fail to realize that pity and condescension are just as limiting, and both scenarios lead to seclusion and lack of opportunities. For example, when a person with Down syndrome is denied his or her right to inclusive opportunities, the justification or excuse might be presented as lack of abilities, or the necessity to protect the individual because of his or her innocence. In the end, both reasons lead to the same place: segregation.

Also read: 10 Fun activities for kids and their grandparents

How to support families of children with Down syndrome

Viva Fifty.- That being said, how can we support or help people with Down syndrome and their families this month?

Eliana Tardío.- First, look at the person first and always. There are no “Down people” or “Downs”. Instead, there are people WITH Down syndrome. The person always goes first.

Second, the best way to be inclusive is to respect people’s right to show us who they are and what they can do as individuals. If you want to make a real difference, avoid making unnecessary changes or accommodations to your interactions with people. Adjust your expectations based on people’s individuality. Don’t make assumptions.

Third, avoid unsolicited attention. Teary eyes and/or insensitive comments in front of my children are never welcome. My children are my own and no one knows them better than me. I don’t need to hear a complete stranger tell me that my children are the most loving human beings in the world (another assumption often made concerning people with Down syndrome!), or what they can or can’t do.

And last but not least, no one is supposed to know everything there is to know about living with and raising kids with Down syndrome. It is hard to understand that which we don’t experience firsthand. If you don’t know how to act or accommodate appropriately and you really care, please ask.

In the end, and in my opinion, equal opportunities and mutual respect are the foundations of a world of opportunities for all when we learn to recognize that we all have different abilities, Down syndrome or not.

Viva Fifty

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