First observed in 2006 by Down Syndrome International, March 21 was officially declared World Down Syndrome Day by the United Nations General Assembly in 2011.
March 21, or 3-21, is a symbolic date to celebrate people with Down syndrome and those who live and work with them throughout the world. The date, 3-21 represents Trisomy 21, the medical term for Down syndrome, which is the third replication of the 21st chromosome.
The 2023 theme is “With Us Not For Us” is key to a human rights-based approach to disability. This year’s theme reinforces this value of fairness and the right of persons with Down syndrome and other disabilities to be included when making decisions about their future. It encourages people to treat those having Down Syndrome with respect and fairness. When you show support, you are not doing things for them, but with them; and are considerate of their choices when making decisions.
Down Syndrome Family Network – Education is Key
“We have several international examples of the successes and achievements of persons with Down syndrome and other intellectual disabilities, once they are given the opportunity to show their potential. However, here at home, we call them special, treat them special and assume they can only BE special. We discriminate and deny them their basic human rights, because WE decide they don’t need those rights,” Chairman and Founder of the Down Syndrome Family Network (DSFN) Glen Niles said.
“This is the result of us basking in the ignorance of our academic qualifications that prohibit us from critical thinking with a solution orientation. Instead, all we can eloquently espouse are excuses [of] why we are unable to transition to a more inclusive society for persons with disabilities, and not how we can make true inclusion happen.”
Through the lens of Parents
“As a parent of a daughter with Down syndrome, I have the same hopes, dreams and aspiration for my daughter as I do for my other children who do not have the same diagnosis,” shared Sarah Soell, the executive director of the Down Syndrome Association, US and a mother of a child with Down syndrome.
“I have come to realise, a life lived independently is not out of reach: school, a job, friends, even a life partner. Regardless of her intellectual capacity, she has the same human needs for connection, self-expression and living with purpose as everyone else. I see her future as very bright, one where she is happy doing whatever it is she loves to do. And isn’t that what every mother wants for her child?” passionately shared by Sarah.
Like most children, any child with Down syndrome tends to do well with routine. They also respond better to positive support than discipline. Keep both of those things in mind as you try the following tips.
Do all the run-of-the-mill activities with your child:
• ↓Keep your expectations high as your child tries and learns new things.
• ↓Give your child chores around the house. Just break them up into small steps and be patient.
• ↓Have your child play with other kids who do and don’t have Down syndrome.
• ↓Make time to play, read, have fun and go out together.
• ↓Support your child in doing day-to-day tasks on their own.
For everyday tasks:
• ↓Create a daily routine and stick to it as best you can. For example, the morning might be “get up / eat breakfast / brush teeth / get dressed.”
• ↓Help your child change from one activity to the next with very clear signals. For younger kids, seeing a picture or singing a song can help.
• ↓Use pictures to make a daily schedule your child can see.
Give Your Child Some Control
It’s important for all kids to feel like they have some control over their lives. It’s even more important for children with Down syndrome, and it’s one way to help them live a fulfilling life. For example, you can:
• ↓Let your child make choices when it makes sense to. This can be as simple as letting them choose what clothes to wear.
• ↓Allow them to take reasonable risks. This is a challenge every parent faces. You need to protect your children, but also let them see what they can handle.
• ↓Support them in solving problems, like how to deal with an issue with friends or approach a problem at school. You don’t have to fix it for them, but help them do it themselves.
Communication Matters
• ↓Avoid saying “That’s wrong” to correct mistakes. Instead, say, “Try it again.” Offer help if it’s needed.
• ↓Work with doctors, therapists, and teachers, focus on your child’s needs rather than on the condition.
• ↓Look at what your child is learning at school and see if you can work those lessons into your home life.
• ↓When you talk to your child, keep it simple - the fewer steps, the better. For example, try “Please put your pajamas on,” instead of “OK, it’s time for bed. Let’s get your teeth brushed, face washed, pajamas on, and pick out some books.”
• ↓Have your child repeat directions back to you so you know you’ve been understood. Name and talk about things your child seems to get excited about.
