Addressing Down Syndrome Awareness Month as the Parent of a Child with Special Needs

How to Address Down Syndrome Awareness Month as the Parent of a Child with Special Needs

October is Down Syndrome Awareness Month. As parents we are our children’s best advocates and we are responsible for educating others about this condition. We want our children and our communities to be aware of the abilities of children with Down syndrome. So how do we make that happen?

START BY OFFERING A CLEAR MESSAGE TO YOUR COMMUNITIES
There is still a widespread lack of knowledge about Down syndrome, even among parents of children living with Down syndrome. Many still don’t refer to their children using the proper terminology, or they don’t consider the guidelines of Down syndrome associations. Yet it’s important that we have continuity as we work towards the same objective: Beating the myths and educating communities.

Messages about Down syndrome should be accurate and supported by respected associations like the National Down Syndrome Congress or the National Down Syndrome Society. If you are delivering a speech, publishing an article or giving an interview to the media, be sure to use the proper terminology and language, and request that the host or media outlet does so as well.

Social media has brought together tons of groups, blogs, web pages and possibilities. Join the one that best matches your hopes and feelings. Be responsible about what you say and keep in mind that you are a leader and your child´s best advocate.

TIPS TO KEEP IN MIND WHEN SPEAKING OF DOWN SYNDROME

  • The person comes first. Child, teenager, adult, boy or girl with Down syndrome. There is no such thing as a “Down syndrome baby,” or a “Down’s boy.”
  • The condition is known as Down syndrome. Down is the name of the person who discovered the syndrome in 1866; a syndrome is a group of physical or medical characteristics and doesn’t need capital letters. No apostrophes or quotation marks are needed when you talk about your child with Down syndrome. The most subject is your child, not the syndrome.
  • There are no Down’s communities or Down’s families. Instead there are communities, meetings or parents of children with Down syndrome, families raising kids with Down syndrome or people living with Down syndrome. Empower media to use the name of your child first. For example: The story of Emir, a young boy with Down syndrome is totally different than saying: Down’s child Emir…
  • First and foremost, they are children. Yes they are cute; but they are also stubborn, and they can feel bored or happy depending on their mood. They are human beings and they have ups and downs as everybody else. As a parent the way you speak about your child is the example you give to others as to how to treat him and what to expect from him.

Read Related: Mami of Two Children With Down Syndrome Raises Awareness

  • It is not Down syndrome that we celebrate this month. We celebrate our children and their unique abilities. We educate about Down syndrome because having an extra chromosome is not a disease, it is a life condition that rather than limiting them, gives them the opportunity to demonstrate the power of love and determination.
  • A person either has or doesn’t have Down syndrome. There are no percentages or degrees of the condition, there are different abilities and possibilities depending on the child’s unique personality and family’s resources. Some children with Down syndrome have more physical abilities, while others have more intellectual capabilities.
  • Offer acceptance and empathy. As parents we should offer support to new families that receive a baby with Down syndrome. If you are a parent of an older child with Down syndrome, remember that you’ve already been through your periods of anger, fear, sadness, and acceptance. But new families are still looking for a way to understand and deal with their feelings. Respect them and help them understand from your example. Judgment doesn’t help them.
  • Don’t attack others because they don’t share your views. Some families may decide that the best placement for their child is different from what you have chosen for your child. Don’t take it personally if they don’t follow your advice. Respect the fact that—even though they have a child with Down syndrome as you do—they may have different experiences, fears and hopes for their child. Everyone is different.
  • Don’t expect anyone to do the work for you. If you don’t get involved in your child’s education and development, no one else will do it for you. Set goals for your child. Believe in him and be proud of all that he can do. Work with your child’s teachers or specialists to create a team of partners. They’re not enemies; this is not a battle. Together you form a team to discuss and set the best goals for the child.
  • Celebrate your child’s abilities. Don’t compare him to anyone else. Don’t get frustrated by the things he can’t do and keep working on the things that he can. That’s the best way to foster hope and motivation. Inclusion means giving your child a life free of prejudice, it means letting him have regular experiences and allowing him to grow. Strive to avoid overprotecting your child or blaming everything that happens to him on Down syndrome.
  • Explain to others and your own child about Down syndrome is not a label or a limit. If we are working on beating prejudice we should not be scared about accepting that our child has an extra chromosome. That’s part of his genetic conformation and there’s nothing wrong about it. That’s a reality that needs to be accepted to live a full life.
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