What Goes on in Their Head?
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 28-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 hasn't always been 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).
Yet understanding Gwendolyn's innermost thoughts, worries, and dreams is not about verbal communication. it's about finding ways to scratch below the surface. It is oftentimes 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.
April is recognized as National Month of Hope. Today, our loved ones with Down syndrome have so many more opportunities - community inclusion, college, work, independent living - than ever before. However, understanding how to evaluate these prospects and navigating the complex financial and legal worlds to ensure they have the resources to pursue their dreams is not easy.
The Essential Guide for Families with Down Syndrome provides the framework and resources to remove the mystery and guide you to the solutions. In commemoration of National Month of Hope, The Essential Guide ebook is on sale through April 29th at its lowest price ever. Pick up your copy of The Essential Guide TODAY.
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.
Gwendolyn is subtly expressive. When she writes, her prose usually turn 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, 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 with whom she has a close bond. 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 achieves goals and strives for more independence. She is impressively driven.
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, evolve, deepen, and share.
Gwendolyn's Conversational Growth
When I wrote this blog post originally in 2020, I hoped that one day we would have more in-depth conversations someday. Over the past couple of years, we have definitely expanded our discussions.
She has moved into a residential living community - achieving one of her own key independence goals. She has also had to navigate a new world of friends, drama, and responsibility. So she is talking more about what's on her mind and tackles new issues.
Gwendolyn has helped me with The Essential Guide book project which she inspired. She writes her own 5-minute speech about her journey and bravely performs in front of dozens and hundreds. Thus, through some conversation and much observation, her true nature is shining through.
Take a few minutes. Step back. Observe your kids, no matter how old they may be. No matter what form of communication they utilize. I guarantee you some of the joy they have will rub off on you!
I'm thrilled to announce The Essential Guide was honored with the Gold Award by the Nonfiction Authors Association!
The Essential Guide provides step-by-step support to:
Inspire mindset shifts toward one of independence and possibilities
Foster independence building blocks from the earliest age
Highlight health risks and financial resources every family must know
Detail education and work options to promote community inclusion
Evaluate family- and community-based home options including search process
The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.
“Great resource. A comprehensive planning tool paired with thoughtful parent perspectives.” Teresa Unnerstall, Consultant and Author of A New Course
“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas
Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.
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Beyond Down Syndrome is proud to donate a portion of all book sales proceeds to LuMind IDSC to support Down syndrome research specifically focused on the link with Alzheimer's disease. Did you know that 12% of the US population will be afflicted by Alzheimer's but 95% of the Down syndrome community will have Alzheimer's by the age of 65, often exhibiting first signs decades earlier? Together we can make a difference!
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