Support is a springboard to a vibrant life!
From the day Amanda was born, she was fighting for her life, her breath, and her independence. She was born in Germany on her due date, but not without complications. After being resuscitated, she was swiftly put in the NICU, where she had to be independent of me. Twenty-five years later, she continues working toward that independence and control in her life.
We realized that every day was a lesson, from gaining strength in her fingers so she could tie her shoes to learning patterns to ultimately sorting her laundry. Did this make sense when she was a toddler? Not really, but sometimes you can’t see things unfold until they are right there in front of you.
Amanda has an excellent memory and an insatiable curiosity. We find that working with her strengths creates a solid foundation for skills that foster independence. She likes to know “why” and what we will do tomorrow or Monday and Tuesday, and what about Wednesday? We’ve taught her how to use the calendar on her phone to know when her appointments are, which satisfies her curiosity. She loves to surf the internet for her favorite actors, singers, and movies. We monitor her internet viewing through open communication. We’ve had several discussions about unapproved purchases and what she views, and she does not have any social media accounts. Mistakes happen, and this is the way we learn.
Joyce, Amanda’s mom, shares an inspiring story of the active lifestyle Amanda lives through helping and hobbies. Their story and many others provide inspiration and sage advice with The Essential Guide for Families with Down Syndrome.
Learning Through Helping
Amanda likes to help people. When she was about eight, she saw her friend Danny working at the local grocery store and asked what he was doing. I told her he was helping us with our groceries. So, to this day, when we go shopping, Amanda helps me with the groceries, from the cart to the car, and organizing the pantry. This is a natural thing for her to do. She started helping in the kitchen this way by asking, “Do you need any help?” So, of course, I put her to work. She will often ask if the dishes are clean or dirty. Some days she might not feel like assisting. I will prompt her by saying it will really “help” me, which seems to be the keyword.
Amanda helps me dust and sweep the floor. She also does her own laundry. She will fold her clothes and put them away. She prefers to hang her t-shirts up while I stuff mine in a drawer. She’s a very snappy dresser and lays out her clothes the night before, even her workout attire for her physical therapy. Regardless of what I’m doing, if I’m painting a room or washing my motorcycle, Amanda is ready to pitch in.
My mother taught Amanda how to cook. I’ve kept this up when we cook on the weekends. She can prep food, wash vegetables, cut them, oil the pan, and stir-fry. During the week, Amanda gets organic, freshly cooked meals that she warms up by herself. We input the meals into a program on the computer that keeps track of her calorie intake. We talk about her nutrition and weight a lot; she has lost over 20 pounds.
Amanda is an artist and volunteered at a local museum, but when the pandemic closed the museums, she started her own business. “Amanda’s Art with Heart” was created to spread her artwork in the form of note cards. We sold them at art craft fairs and had some at a local store in the mall. Besides painting, Amanda is an excellent archer with an array of professional-grade bows and arrows. She is also a Special Olympic gold and silver medalist in swimming and track and field. She has tried Tai Chi, sailing, and white-water river rafting and traveled throughout Europe, the Caribbean, Canada, and the United States.
Throughout Amanda’s life, we have strived to give her opportunities and responsibilities, both of which have fostered her independence as a lovely young lady.
Joyce, Amanda’s mom
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 the 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.
“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 the fields of 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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These worksheets provide a framework for developing and maintaining your own roadmap to independence. Tabs include Creating your Independence Team, Daily Hygiene & Chores Checklist, Managing Social Circles, Financial/Benefits Support, and Housing Options.