Love and Empowerment: PART 2
How to Empower your Child with Ds While Maintaining your Guiding Role
- By Kim Torres
Down Syndrome Association Houston
- Posted in
May 01, 2020
As we discussed on April 24th in our first part in this two part series, independence is a skill that must be strategically taught to our loved ones with Down syndrome. Today, we discuss teaching decision making, goal setting, and self-awareness to round out some of the important skills we as parents can give our kiddos with Ds.
Decision making is defined as choosing between unlimited options. This process is actually hard for many people, with and without a diagnosis of Ds. To teach it we must start small or start with choice making - the art of deciding between a finite number of options. Once your child with Ds can choice between two options, increase to three or four options. Then expand to decision making. However, this process will need to be slow as well. A good technique is to teach your children how you make a decision. In the YouTube video that accompanies this post (https://youtu.be/Ag3C8D9gLQo) I share how I would walk my son through the process of planning a vacation destination. While we may start with unlimited options, some are scratched off the list due to cost or personal preference. Others involve too much travel time. As we walk through the decision making process (using a visual list, of course) I talk him through my reasoning on why some destinations remain options and others don’t. I also encourage him to come to draw conclusions about destinations on his own. For example, he hates the cold, so maybe Alaska in winter is not a choice he (instead of me) would like to make.
Goal setting is a favorite skill we like to teach at DSAH. It is defined as the ability to set appropriate goals for oneself and achieve the goals with actions. In our Education for Life Day Program, we have seen exponential growth in our participants through the process of individual goal setting. Up until recently, our program participants had parent or healthcare provider created goals. Many of our adults were not engaged in the goals and would refuse to work towards them. We thus decided to teach the art of goal setting to each adults - including those that are nonverbal. They in turn got the chance to create their own vision boards and goals determined by their personal wishes in life. We had one adult set a goal to understand making change so that she could eat out without her parents needing to help pay the bill. Another adult wanted to improve her spelling so that she could write better notes to her friends. The difference in engagement was unimaginable! These same adults who did not always want to sit down and work on goal progress began to ask for more individual goal time! And we are not talking just replacing one activity with their preferred goal. We are talking about adults asking to shorten lunch period in order to have more time for personal goal work. This empowerment and engagement is what drives life-long learning! Whether the goal is for employment, school, recreational activities, or home life make sure your loved one with Down syndrome knows how to make and work towards goals.
Lastly, self-awareness is defined as having an awareness of one’s own individuality, strengths, and areas for improvement. Yup, you read that right! Our loved ones with Ds MUST understand their unique strengths and weaknesses and that begins with them understanding that they have Down syndrome. I personally have never hid Down syndrome from my son. If you ask him now at the age of nine if he has Down syndrome he always says, “yes.” Then if you ask him if it is okay to have Down syndrome, he replies with even more enthusiasm, “yes.” Now I do not claim that he understands the genetic and medical components to having Ds, but he knows it is a part of him just like he knows that he is smart, funny, kind, and super caring. Being aware of these strengths and weaknesses in a key component to teaching long-term safety skills to our loved ones with Ds. When you know your strengths and weaknesses and can articulate them in words, gestures, or signs, you can better self-advocate for yourself if and when you find yourself in a situation where reliance of other adults is not an option. So, praise your kids for their strengths, but also define Down syndrome to them. Let them find strength from the diagnosis instead of not being able to define their difference.
We hope that you have enjoyed this two-part series on teaching independence. For more information, please send us a message at www.dsah.org.