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Rejecting the Myths

In order to reject the myths about what children with Down syndrome can and cannot learn, we must first review them and understand their source. Much empirical data on children with Down syndrome was gathered in the 1960's and 1970's. In many cases, the persons who were included in research lived in institutional settings and/or were not provided a typical education. Much of what has been believed to be true for many years about persons with Down syndrome comes from this era when opportunities were limited. Today, opportunities abound. Let's talk about some myths:

Children with Down syndrome are always happy.

As every parent knows, no child is always happy. This myth is perhaps the most damaging, as it implies that the person with Down syndrome doesn't have the connectedness or awareness of his or her surroundings to feel fear, anger, sadness or disappointment. In this school of thought, we reduce the person with Down syndrome to a non-person.  In reality, persons with Down syndrome are sad when someone calls them a name; disappointed to not be invited to the prom, fearful about a thunderstorm and angry when their parents make them turn off the TV and go to bed early. To think any less is to dehumanize the child. He or she is a whole person; filled with hopes and dreams and wishful for a rich and meaningful life.

What makes some children with Down syndrome uniquely able to maintain a high level of contentedness in occasionally adverse situations seems to be something different-rather than blithe happiness, what I often see is an acceptance of things as they are and a willingness to work around them. Sometimes this assumption that things will be alright is borne out merely by the reality that many of the things we all worry about in life never come to pass.

When my kids were little and the bus was late, I worried it had been in an accident. That never happened. When Jordan comes home to find my car in the garage and me not home, he doesn't sit and fret but he does take action. He calls me on my cell and says "When you go out for a walk or with friends, you should leave a note so I don't worry." So now, guess what I do? His simple, logical approach to living a worry free life has rubbed off on me. We all leave a lot of notes and text each other. But we are perhaps "happier" as a result. At the least, we spend substantially less time worrying.

 A person with Down syndrome will always be child-like to you.

Each person is an individual, but all people mature with age and learn and grow to reach new plateaus. By accepting the sweetness of this myth, we do two damaging things: we reduce our expectations for our child and we fail to prepare her for an independent future. The catch is this: by preparing your child to live independently, you are not forcing her to move out. You are not being delusional; not denying that she has Down syndrome. You are, however, providing her with the skills necessary to reach her maximum level of competency so that, if she has the cognitive ability to live independently, she will also have the acquired knowledge to live on her own. By treating her as a perpetual child, you deny her any options but to behave as a child. She wants more!

Adults with Down syndrome are overweight.

Historically, a significant percentage of adults with Down syndrome have been quite overweight. Historically, this population has also not been part of the competitive work force, not participated in full public education and not had active social lives. As the paradigm has shifted over the past 20 years and adults with Down syndrome are given more opportunities to work and engage in meaningful social activities, the weight problem is less overwhelming. What is a fact is that people with Down syndrome are significantly shorter than their peers. Average adult male height of X and adult female height of Y should drive us, as parents and educators, to commit to teaching our children with Down syndrome about nutrition and exercise.

Adults with Down syndrome will be joyful even without a sense of purpose.

As you look around you, all of us have varying needs for friends, support, encouragement, and outside stimulation. Likewise, the child and adult with Down syndrome will benefit from deep connection with others. This will happen through work, recreation, places of worship and school.

When we deny opportunities for this because of our own concerns or anxieties, we deny our adult children rich and full lives. Each of us needs a sense of purpose; we are purposeful when we feed the cat, have responsibilities around the house, and when we are held accountable for learning.

Persons with cognitive impairments have just as strong a need as their peers to feel that they are doing something meaningful; being their best. One adult woman I know went back to a GED class in her thirties because, instead of a diploma, she had received a certificate of completion from high school. As she became immersed in her community through work and church, she became aware of the difference between a diploma and a certificate of completion. She also read job applications which invariable asked for date of high school graduation-not exit date. And so, in her late thirty's, this woman quietly went to GED classes and studied on her own until she was able to get a real diploma. She needed the internal satisfaction of having done her best and being able to compete in the larger world.

Children with Down syndrome won't learn to read.

Children with Down syndrome who are not in instructive educational settings will sure have difficulty learning to read. As impressive as many persons with Down syndrome are, most still need to be taught. Reading is the cornerstone for all future learning, so do not skimp here. Read to your child many times a day.

Build reading into your daily routine. Stories are fun and relaxing and a nice way to settle in for nap or bedtime, but this is far from the only reading you will do in a day. Read the signs at the grocery store. "Read" the McDonald's arches. Read the tabloids at the grocery checkout. (Come on, you do it anyhow, now you just have more permission!) The tabloids provide funny and silly headlines, which will make your child laugh. When you read aloud from your environment to your child, you are teaching him two things; the actual process of reading and the joy of collecting knowledge from your surroundings and assimilating it into daily life. The joy of acquiring knowledge is a precious gift. Give it!


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