Rebekah shares her heartwarming story of goal setting and support to help Dutch gain employment and a place of his own.
Dutch was born in 1996 when I was just 19 and newly married. When he was 2 days old the doctor suspected he had Down syndrome.
Remembering a Role Model
My first thought was “oh well, he can grow up and be anything he wants to be.” That was because when I was growing up, we watched a show called “Life Goes On” with Corky, a man with Down syndrome as the main character. My mom always told us that people with disabilities could do anything.
Determined to Excel
So right from day one Dutch was determined, he survived heart surgery with infections, many trips to doctors, pneumonia, and an endless ear infection. He NEVER gave up, never complained and was always smiling.
I did my part as well. I never babied him. I worked hard with him when he was younger on his fine and gross motor skills. I treated him the same as my other three children. Dutch grew up with two twin brothers and a sister 5-6 years younger than him, so he learned a lot from them. Dutch participated in every sport possible. He has always been very stubborn and determined so if he wants to do something, he figures out how to do it.
Dutch's aspirations and determination are so inspiring. His independence journey started from his first days and continues in earnest today. Dutch's story and many others provide inspiration and sage advice with The Essential Guide for Families with Down Syndrome.
Blooming Into Independence
Dutch has always been extremely social. When he was 16, he started high school in a fairly new town, but it did not take him long to fit in and make friends, including one very special girl, Cheyenne. He didn’t tell me about her for a couple of years because I used to joke that he couldn’t get married until he was 31. He also learned that he could move out when he was 18 and get a job, so for the next 3 years he was packing frequently and telling me he was going to move out.
After graduating at 19, Dutch was registered with a local job agency in town and we wrote out his goals. After six months, Dutch had no job, no job training, and no discussion about employment. I asked them why and their answer was simple “We don’t want to set him up for failure.” WHAT?? So, people with disabilities shouldn’t experience failure? Ok, so I removed him from that agency and decided to do Family Managed Supports, where I hire staff and the government pays for the services. I hired his first staff in July and Dutch had landed two jobs by his 20th birthday in August.
He was working at a Tim Hortons location in our city two days a week for three years before new management took over and made some cuts to staff. He also got a job working for the city at our sports arena scanning tickets for sporting events and concerts including our local hockey team games. He isn’t afraid to be around people or to ask for help. At work, he greets patrons and learns from his co-workers. He doesn’t hesitate to ask the bus drivers if this is the right bus for his destination for his commute. This has helped build capability and confidence.
One More Goal
Now Dutch still had one goal left to achieve – moving out. I did consider staffed community living for Dutch but there are limited options in our area, and I felt like he could do more. I didn’t want him at a place that decided what he could and couldn’t do. I want him to live life as he wants and to make his own decisions. The opportunity came up for him to move in with a support worker when he was 21. We both interviewed support staff options to ensure it was the right fit for Dutch. He thrived with staff and learned so much.
Although as a mom letting go was hard, I never held him back and wasn’t going to keep him from his dream. Two years later an opportunity came up that allowed us to purchase a home for Dutch.
I know I am not going to live forever, and he may outlive me. So, I need to make sure that Dutch has a home that belongs to him. We looked at a few properties, but the moment he stepped foot in that home he wanted it.
We live in a city and there are some rough and unsafe areas. So, choosing a home that would be safer was top priority. This home is in a quiet area with neighbors that look out for each other. Dutch is happy with his support roommate. He still needs reminders to take his thyroid meds and to wear his CPAP, but he is doing so well. He can take the city bus and do some shopping on his own. Cheyenne, his girlfriend of 10 years now, comes over often, sometimes for sleepovers. His next goal is to marry her when they are 31.
Rebekah, Dutch’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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