Unique Approach Sparks Confidence and Independence
In the 1990s I was an educator for adults with learning difficulties. I met loads of parents who couldn’t imagine how their adult offspring would cope without them. In 2003 my newborn son, Dale, was diagnosed with Down syndrome - and eighteen years later the psychiatrist confirmed that he is also autistic.
Having met those parents of my students in the 1990s, I knew from the start the importance of planning to let go and to see my son managing without me. I’m not going to live forever. Losing one’s parents is hard enough, without having to cope with changes in daily routine as well.
I knew from my teaching experience that people with Down syndrome can learn very fast but find it very difficult to unlearn anything. I also knew the importance of positive language, from my general life experience.
Curb Your Caution
So, while Dale was learning to walk, aged two and a half, I taught him “Stop at the curb.” While my son was in his stroller or pushing his little trolley, would always “Stop, look, listen” when we were walking along the sidewalk. By the time he could walk and run, aged three, he was always stopping at the curb. That had a huge benefit. It meant that Dale could run along the sidewalk, because I was absolutely confident that he wouldn’t run into the road. He had no sense of danger or fear, but he always stopped at the curb. Later, I began to let him get off the bus one stop early and run that last block to school. I knew he would always stop at the curb. There were plenty of other families to cross the road with him. I could let him run free, because I had taught him to stay safe, strictly but without fear.
Sheila, who shares Dale’s story today, admittedly has a unique parenting style. However, she is adamant that it has empowered Dale (age 18) to be independent as he continues to grow. Thus far, her approach has proven life-changing. Their story and many others provide inspiration and sage advice with The Essential Guide for Families with Down Syndrome.
When Dale was about eight years old, we had a disagreement while out and about. I wanted to buy a newspaper but he wanted to go straight home. This was a journey we did every day. I reasoned that my son was not going to tell me I couldn’t buy a newspaper, so I told him to take himself home: down the street, over a footbridge crossing a six-lane city highway, then two blocks to our house where an elder sibling was already home. I got home and was happy to find Dale had indeed taken himself home as expected.
Best Advocates
Eventually, we had a visit from local social services who were unhappy at the risks they felt I had been taking. They also accused me of allowing my son to go out with untidy clothes – I had encouraged him to dress without paying much attention to the finished result – and they said that I hadn’t been feeding him properly. Believe me, once social services start on you, they will collect every story that might point to neglect or abuse. Of course, there are many cases of true abuse, but ours was merely an example of creative parenting.
I told them that yes, I’d taken risks, but I knew for certain that if I didn’t allow Dale to take some risks then he would never get that vital sense of independence and would still be needing constant support at the age of thirty. If I taught him to stay close to me, it would be much harder to teach him to separate from me.
Now Dale is eighteen. I’m hoping we can soon get him living in his own studio apartment with support which will gradually reduce as he demonstrates his ability to manage on his own.
My son still can’t understand risk, and I don’t want to teach him any more fear. He’s afraid of the dark and sleeps with his light on all night. He knows bad things sometimes happen. I reckon that my son will be motivated to be conscientious, by his desire to be seen as independent and competent. That’s much more positive than fear.
Sheila, Dale’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 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.