Psychologist Dr. Robin Lynn Treptow talks about the life-changing effects of how expectations influence outcomes. She shares her own experiences of having a child with Trisomy 21 and how biases regarding the diagnosis made it difficult for her family to help her child thrive, the reality of how children with Trisomy 21 can develop intelligence and skills, and how we can all help overcome the biases that hold these children back.
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This episode on Down syndrome with Dr. Treptow is really harmful. Listening to it, you realize she bases everything on her son and her experience with him. My son is different. His limitations ARE NOT due to how we raised him or treated him. We didn’t hope he would walk, we knew he would walk, on schedule. (He didn’t.) We knew, as the medical and educational experts around us advised us, that he would begin to talk on a fairly normal schedule and that was exactly our expectation. (He did not.) We read to him and filled his life with stimulating educational activities. He went to early learning programs and had many one-on-one hours with teachers, his siblings, and mom and dad. I was told he would be a high achiever. I never looked into his eyes and never saw anything other than bright, alert interest.
He entered kindergarten unable to talk and not quite potty-trained.
I am not stuck in the “old way of thinking.” I do however have a good grasp of reality. The reality is, people with DS have a very wide range of abilities, from people who are very low functioning (unable to speak, incontinent, needing supervision) to those who are able to live independently and support themselves.
Dr. Treptow doesn’t seem to recognize the actual physical differences in people with DS. These are not superficial like facial features. For example, all people with DS have low muscle tone, because the muscle fibers in people with DS are shorter than other people, making all movement more difficult. (That’s why the well-meaning lactation consultant came in to help Dr. Treptow.) The cilia of all people with DS are irregular and do not move in the same smooth coordinated motion of other people. 50% of people with DS are born with heart defects. So for Dr. Treptow to speak as if this is all based on our “perceptions” and our attitudes is absurd. The genetic effect of DS is real and detrimental.
I don’t feel I need to detail how well my son has done…it has been and sometimes is a long difficult road with him, but he is a great guy, active, involved in our church and community, very well-loved. I do need to say that Dr. Treptow is 100% wrong: Trisomy 21 has a stark effect on the function of the brain, leading to sometimes mild, sometimes severe developmental disabilities. Her denial of this is harmful when she says, in effect “It was bias that made him low-functioning.” And her test group of exactly one does not make her an expert, no matter how many degrees she has.
Hi Audrey. Thank you for sharing this feedback. We’re sorry if Dr. Treptow’s point was not well made, but the point wasn’t to say all children with Down’s Syndrome will have the same experiences, abilities, or skills as her son. Her point about expectations is meant to go both ways – people with disabilities shouldn’t be discriminated against based on positive OR negative assumptions and expectations. Her research is specifically into how negative expectations affect doctors’ willingness to provide adequate treatment for infants with Down’s Syndrome because their implicit bias makes various therapies seem not “worth” it, so that’s why most of her examples of were of the ways her son exceeded the low expectations – because she’s worried those low expectations, especially for infants, might prevent children with Down’s Syndrome from being referred for some therapies and treatments. In any case, we’re glad this comment is here, so others can see your very important points about the very real challenges for people with Down’s Syndrome!
Because this is public, I would also want to say to any new parent that the vast majority of people with Trisomy 21 do very well; they are active, healthy, happy and busy in their communities, whether working, volunteering, or living at home. My son’s experience is unusual-I have met very many people with DS who talk your ear off and certainly had no problem in kindergarten. My son works with a job coach, is a very good skier (much better than I am), rides and cares for his horse, loves to dig clams and fish for bass, is a caring uncle; while he is not a DS superstar, that doesn’t mean he doesn’t have a great life. We are just as proud of him as we are of our other children and I cannot imagine life without him. New parents: this child will bring you great joy and comfort. Stress too, but more joy than any sorrow.
Here is a true story: when his grandpa died, one aunt was having a terrible time at the funeral. She was fighting for control, rigid with stress, and rejected anyone who came too close, fist clenched, her face a mask. My son came up to her and what could she do–she couldn’t push him away and he didn’t let her reject him. He is a big guy and he just enveloped her in his arms and began to pat her back gently. And she broke down and sobbed and sobbed, which was a healing moment for her, and for us all. No one else could have done that for her.
Final comment: There is a typo in my first post. I meant to write” I never looked into his eyes and saw anything other than bight, alert interest.”