What is true support?

Some people automatically assume that people with Down syndrome need to be treated differently and delicately. They think protecting them is true support. Some assume people with Down syndrome shouldn’t be held to high expectations because failure will only bring pain.

Yes, support is doing what someone may need, but it is not true support to help a person avoid opportunities to learn and grow.

People with Down syndrome are absolutely capable. Expectations should be individualized, but I am often surprised by how even my own expectations should be higher for Lila. She surprises me every single day.

For example, my husband and I know that Lila struggles to regulate her senses. She struggles a lot. Sometimes she becomes

wild with fear. When she is overwhelmed, and even when she isn’t, she may:

• yell or scream

• refuse to follow directions, and in fact do the opposite of what is asked

• throw items around her

• hit, push, or scratch a person nearby

• harm herself or put others in danger

One minute you see sweet Lila, and the next the Incredible Hulk is trashing the place. This response is usually due to alarm based on the situation. Last Sunday in Sunday school, Lila became overstimulated during a game. Her response was to begin yelling and to start pushing other children. If that is allowed to continue, the other kids obviously don’t want to be around her.

To help her calm down, her buddy took her to a sensory quiet room for some one-on-one play. We have met with her buddy to explain Lila’s needs and our expectations, and in this case, her buddy did what we would have done. She saw the need to take Lila out of the situation to calm down with the intent for her to return and participate with her classmates. While some may just brush her behavior off as “what disabled people do” and allow it, her buddy didn’t just let Lila continue to disrupt class, push other kids, and escalate into more sensory distress. That is true support.

When her senses are overwhelmed, Lila becomes desperate to communicate that she is not okay. Believe it or not, this happens often. A smell can set her off. Bright lights can set her off. A heated discussion or low-frequency repeated noises can set her off. Imagine her response to a public place that incorporates all of those things!

Despite how she feels inside, Lila is still expected to follow directions, to act politely, and to treat others well. We hold her to that standard. She may be little and cute now, but she will grow. It will not be as easy to gain her compliance as an adult. (It’s not ”easy”

now!)

Treating a person with DS with ”kid gloves” usually involves enabling that person to continue negative responses. And these negative responses can lead to isolation for that person as he or she gets older. Just like those kids in Sunday school who clearly did not want to be screamed at or pushed, people begin to back away, leaving the person with DS less included in daily life. Yes, it’s hard to work through these situations, but we don’t want Lila to feel that pain either.

All that said, Lila has to be taught how to respond well, to overcome situations where she is struggling to regulate, and it starts with how those around her respond to her! So how can we truly support Lila and people like her?

We can be intentional in our responses to face situations that we might rather ignore. For example, check out the graphics below about the 3 R’s or better ways to interact. This works for any child and even adults - with or without Down syndrome.

Lila is a non-verbal person, but we still take her out of the sensory stimulation, help her feel safe, relate to her feelings, and talk through proper ways to respond when she feels like that. She understands what we are saying, and she wants to know we understand her. As she gets older, she will become

more capable of controlling her responses.

True support does not involve enabling a person to continue negative behavior because your expectations are low. Be intentional to help the person to work through the issue and plan for how to respond in future issues.

This is not easy. It is exhausting. We are constantly studying what we should have done. Sometimes we are impatient and don’t handle the situation well. Sometimes we don’t read the situation correctly in time to help her promptly. A lot of times we are the recipients of her “responses.“ But when you love someone, you walk alongside them, and you believe in them! It’s never too late to start taking steps to intentionally support a person and help them to work through something hard rather than avoiding it - no matter their abilities.