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What Goes on in Their Head?

Updated: Jan 9, 2023

Adults with Down syndrome often drop subtle clues to their thoughts & dreams

"Gwen May Not Speak"

I've always been curious about the answer to the question, "What goes on in her head?" since our 26-year-old was born. Oh, I've asked the same thing of our other two kids, but eventually, I can peel back their guard and decipher some of their thoughts and intentions.

Gwendolyn is quite communicative. This isn't always the case. When she was a toddler, one of her speech therapists dejectedly shared with us that she feared Gwendolyn may never talk. My wife Jennifer and I laughed out loud, obliged to share with the therapist that she talks a lot at home, she just doesn't like you (I think we phrased it as chemistry).

So Gwendolyn can be talkative, yet it is hard to really understand what she is thinking. There are not many deep conversations, so we rely more on observation to discern patterns, trends, or new drivers in her life.

Creature of Habit

Gwendolyn is definitely a creature of habit. She likes routines and repetition in several forms:

  • Hobby rotation: (especially during COVID) includes Art & Jewelry w/ Mom, surfing the internet for her favorite music and Disney stars in her room, writing and organizing the names of dozens of her friends at her desk, and watching her favorite Disney and Nick TV shows in the kitchen.

  • Talking points: she always wants to know how we are doing ("you ok?"), she asks what is for dinner while breakfast is digesting, and she gossips incessantly about boys and friends (especially boys) when school is in session.

  • Proud moments: especially since she has adopted her quest for independence as her mantra, she is very proud to share when she cleans the kitchen, reads a book, cooks her own breakfast, rides her bike to the park, or walks to and from work. The first time she walked to work by herself, I waited at the halfway point for her return. When she crossed the street by herself and saw me, she ran up to me with a smile from ear to ear and gave me a big hug! Those are the magic moments that last forever.

Subtly Expressive

Gwendolyn researching books for independence materials

Gwendolyn is subtly expressive. When she writes, her prose usually turns into lists of items on her independent plan (like cleaning or cooking). When she cuts out pictures from a magazine, it's often photos of furniture or accessories for her independent dream house. And when we plan a family vacation (pre-COVID), she talks about each of the extended family members we will see along the way.

Much of this discussion seems to be repetitive and superficial and so, as the years roll by, I tend to pay less attention or even joke that we need to put a penny on her head (ok, that's for the older readers who may recall placing a penny on top of the record player needle to keep it from skipping and repeating).

Clues to her Thoughts

But now, as I try to decipher what is going on in her head, the clues are right in front of me.

  • She loves people - not all people (apologies to the speech therapist). But she especially loves those she has a close bond with. It may seem superficial to most, but she senses authentic care and love and she responds to that whether it is family, friends (and boyfriends), some teachers, or her TV friends. These are important bonds.

  • She loves her independence - she plans it and talks about it OFTEN. She sees role models all around her at home and on TV that she seeks to emulate.

  • She sees no roadblocks- most of us see obstacles at every turn. Sometimes we persevere and plow through and other times we go around or retreat altogether. She sees no roadblocks. She certainly doesn't see her Down syndrome as a disability or constraint. She's not much for the societal norms that impair most of us. Why can't she have a job? Why can't she walk to work or ride her bike by herself? Why can't she move out? Why can't she get married one day? All very empowering questions.

Though the days blend together a lot more in her twenties than when she was a toddler, Gwendolyn is continuing to grow and evolve. Perhaps we will have more in-depth conversations someday. But in the meantime, I'm going to take joy in the person she has become and appreciate the subtle clues she drops through her routines and repetitions along the way.

Take a few minutes. Step back. Observe your kids, no matter how old they may be. I guarantee you some of the joy they have will rub off on you!


The UPLifting Guidebook Project is gathering information from parents, doctors, living facilities, and individuals with Down syndrome so we can help in your journey.

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