INCLUDING: How to be Home Alone & How to Promote Safe Online Experiences
Safety and security understandably stand as the primary concern for parents and caregivers when it comes to adult independence.[i] Parents worry about all their children and family members, but this especially applies to those who appear more vulnerable. Most people with Down syndrome assume the best of people. Concepts and terms such as “devious” and “evil” don’t really compute for them. Even when someone at school appears to be mean, that confuses them because they assume the best in others. Thus, our forewarning to be cautious seems foreign to them.
However, the Autism Housing Network notes over 60% of individuals with Intellectual/Developmental Disabilities are victims of abuse. “Abuse is prevalent.” 25% of persons with autism are sexually abused and 44% have been abused more than ten times. These are astounding and frightening numbers.[ii] Similar statistics likely apply to the Down syndrome community. Yet, we can’t shield our loved ones by just keeping them at home. We must equip them with the skills and safeguards to support themselves and their independence. Until safety and security are aptly addressed, the thought of our self-advocate operating on their own, whether at work, commuting, or living in their own home, can be rattling.
While this risk will never fully disappear for any of our children, we can take steps to put protections in place.
Engaging with Strangers
In Chapter 4 we discussed The Social Circles Model, a process for categorizing engagements and better understanding appropriate and inappropriate contact. Although dangers and abuse do exist within the more familiar groups, typically the greatest risk lies in the “Strangers” category. A robust teaching approach includes discussing and role-playing various scenarios:
1) A clerk at a store says hello: It is appropriate to return the gesture but not to provide personal details like phone number or home address unless required for a transaction.
2) A person approaches you while you are grocery shopping alone: You may wish to say hello but keep a watchful eye and decline any assistance or conversation. These are difficult situations because most people are just friendly and want to be helpful, but if your self-advocate has a hard time distinguishing intent or in defending themselves if the encounter goes awry, best to avoid such engagements in the first place.
3) Another student bullies you at school: Leave the situation and find safety with friends and teachers. Report the situation to the teacher and avoid that person when possible. Everyone deserves to learn, work, and live without bullying.
4) A stranger invites you to walk with them or get in their car: This is a clear “no.” The catch is that strangers and criminals are professional and quite devious. They may say the parents asked to pick them up or they may lure them with candy. When this scenario was presented to dozens of adults with Down syndrome at the Friends of Down Syndrome in Houston, 85% said getting in that car would be okay![iii]
The first step to manage these risks is openly discussing them. You don’t want to overwhelm or scare your self-advocate, so you may offer this conversation in small doses, but you must have the discussion. Talk through the scenarios and nuances like candy and trickery. Ask what they think and what they would do. Role play these scenarios when you are out and consider testing your loved one as well. Ask a friend of yours who your self-advocate doesn’t know to engage with your loved one in non-physical conversation when you are not standing nearby. You may observe or get a report-out from your friend and then have discussions with your loved one afterwards. As Daniel’s mom, Carolyn, recognizes, “We can teach stranger danger all day long, but we will not ever know unless we test them to see if they apply what they have learned.”
Train your self-advocate to become more aware of their surroundings – the people around them and signage for exits or assistance. Joyce asks Amanda to remember where they park and guide them back to the car later, noticing certain things about buildings along the way in order to raise Amanda’s level of awareness.
These approaches will help self-advocates understand appropriate behavior and manage their own actions accordingly. But we must also have a conversation when someone else violates the appropriateness of a relationship. This could be a friend bullying or pushing them at school, a close family member or friend trying to touch them inappropriately, or a stranger trying to strike up a conversation or lure them into a car. Many abuses go unknown. Watch for uncommon behaviors or reclusiveness and encourage your self-advocate to share those situations with you or an authority figure in a safe place. Otherwise, when left to their own devices, they may feel unwarranted shame or guilt and not learn how to prevent such situations in the future.
As you practice each of these scenarios, your loved one will become more confident in their actions, and you will become more comfortable in their abilities. Still, you will need to assess the comfort level of yourself and your self-advocate in remaining safe and secure in various situations. Maybe together you choose certain work opportunities based on the engagement frequency with strangers and the level of oversight offered.
It is impossible to remove all safety and security risks for your self-advocate, or for any of your kids or even yourself. However, discussions and practice can mitigate the risks to an acceptable level. Merely keeping your self-advocate at home, away from others is never the best solution. We must make safety and security a priority in your Independence Plan so your self-advocate can be safe while still enjoying the opportunities to work, live, and love.
Around the Home
Home should be a comforting place for everyone, filled with loved ones, support, hobbies, and warmth. However, it also includes personal risks worth identifying and mitigating. Your self-advocate should be aware of the hazards around the house, especially in the kitchen. Whether you are ready for them to operate appliances like the dishwasher, garbage disposal, microwave, stovetop, oven, or knives on the countertop, they still need to understand the risks. How many of us have flipped the wrong switch and suddenly the garbage disposal starts whirring? Who would know that tin foil and forks don’t belong in the microwave unless they are told or experience the sparks? We’ve probably all leaned against stovetop buttons before. All these hazards should be reviewed and explained. Until you are comfortable your loved one clearly understands the risks and how to stay away or operate each, keep safeguards (stovetop button covers or microwave door locks, for example) in place.
Other hazards scattered around the house include electric sockets and light plugs, the risk of small appliances near bathtubs or sinks, ceiling fans above beds that act as trampolines, and front and back doors that provide escape routes for wanderers and entry points for strangers. Security systems to ensure doors are locked and water isn’t overflowing from the bathtub are available. The security and peace of mind may be well worth the investment.
Home Alone
Leaving your self-advocate home alone is both empowering for them and life-changing for you. The self-advocate achieves a significant level of independence — a stair-step change that may seem overwhelming to them but most often feels overdue. For the parent, this step suddenly breaks that bond of 100 percent co-dependency and begins to suggest further independence is possible for the self-advocate and family alike.
As with all our kids, there is no specific age that works for all self-advocates. You need to assess their preparedness while readying your mindset as well.
This is clearly not a simple step but requires preparation and practice. In advance, discuss together what being home alone would mean and when you both believe the time is right for this next step. Explain that the challenge is not in the routine but the exception. The vast majority of the time, everything will go smoothly during their time alone. However, those exception are what everyone must be prepared for. What to do if someone calls (for those with landlines)? What if someone knocks on the door? What if they say they are the police? What if a smoke alarm or security alarm goes off? What if he/she doesn’t feel well? What if a fire breaks out in the house? All these scenarios are unlikely, yet plausible. Our guidance with Gwendolyn was that she should call us under all these circumstances but if she can’t contact us, she should dial 9-1-1 and state her name, address, and issue. If there is a fire, she should exit the house immediately and go to a neighbor’s house and call us and 9-1-1. It’s important to practice these scenarios together and later include unannounced drills.
When you are ready to go to the next level, first practice by pretending to be out of the house while in your room. Next you can rehearse by being in the car outside, at a neighbor’s house, or a nearby restaurant. Be sure your cell phone (and that of your self-advocate) are charged and not on “mute” in case you get a call. Don’t be surprised to get some calls. It can take some time to build comfort and confidence. Having a home alarm system and a video doorbell will help give you peace of mind since you can become aware of any issue, even if your self-advocate doesn’t remember to call you immediately.
Leave a “cheat sheet” for your self-advocate next to the front door and in the kitchen which they can reference rather than panic. Include your phone number, 9-1-1, and the info they should share if they must call 9-1-1. After several practices, they will begin to master this important step and you will begin to see new possibilities.
Modern Technology
It is helpful for our self-advocates to have their own smart phones and social media accounts, but as with all users, restraint is necessary. Gwendolyn has had her own cell phone since she became a teenager. We can call and text each other at any time. We also use the “Find My Friend” app to know her location while she is commuting, at school, or at work. Naturally, this convenience can be abused. Our daughter has gotten quite adept at surfing the web. She once used the internet to monitor her classmates’ fundraising efforts for her school’s annual Ball. She so wanted her best friend to win that she submitted her own online pledge of nearly $10,000 herself! Thankfully, school administrators called us to see if this was truly our intent. The “donation” was removed, and we had a long discussion about the proper use of the internet, money, and responsibility. A friend shared a story of their son with Down syndrome arranging his own moving van online to expedite his dream of moving out. Don’t underestimate their abilities.
Obviously, there are also dangerous elements in social media and the internet. It seems like daily we receive SPAM, luring advertisements, not to mention inappropriate invitations or images. It is certainly prudent to have conversations about these elements before providing a phone or laptop/iPad, as well as frequent reminders over time. I would also advocate periodically checking their email received and sent and website history to ensure your self-advocate remains safe and protected.
It is, honestly, impossible for parents to keep anyone completely safe. With a strong dose of forewarning, training, and precautions, we allow measured risks for our children because, while we want to protect them, we also recognize they need to be equipped to thrive in the world. This includes being aware of and managing the negative elements. Rather than limiting our self-advocates’ access, we need to prepare and practice with them, to minimize risks while preserving opportunities.
Becca McPherson is the Vice President of Development at Marbridge Foundation. They are reminded of the challenges and concerns around safety and security every time they meet and tour a new family and take their responsibility quite seriously. In our Expert Advice for this chapter, Becca shares the steps Marbridge takes to ensure safety and security. You may consider these practices when evaluating day programs and living communities for your loved one.
[i] Alyssa Siegel, MD, Keeping Your Special Needs Child Safe, Children's Hospital of Philadelphia, Philadelphia, PA, August 30 2018, https://www.chop.edu/news/keeping-your-special-needs-child-safe
[ii] Desiree Kameka Galloway, Once Size Does Not Fit All Video-Part II: Facing the Challenges for a Better Future, Madison House Autism Foundation, https://www.autismhousingnetwork.org/education/virtual-tour-housing-options/
[iii] Kay Fendel, Interview, Houston, TX, November 03 2019
This article is adapted from our award-winning book, The Essential Guide for Families with Down Syndrome, which has chapters covering housing, financial benefits, work, continuing education and more in detail. Everyone's independence path is different. It's important to use available resources to find the best option for your loved one.
Want to Learn More?
Check out our diverse blogs split out by age ranges
Consider picking up The Essential Guide for Families with Down Syndrome to help fill in the blanks and provide you with the resources you'll need.
Utilize other website resources including an Independence Assessment Quiz, our 10x10 YouTube series, and a fabulous Resource Directory.
Got more questions? Join our live virtual webinar in April. Find out more and register here!
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.
GET YOUR COPY HERE!
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!
Get the latest on The Essential Guide, speaking engagements, and our blog articles and resources when you subscribe to our free website.
Sometimes this blog may get hidden amongst your Facebook posts or buried inside a Facebook Group. Don't miss any blogs filled with steps to help us all advocate for our adults with Down syndrome. Subscribe today!*
Get your
FREE
Letter of Intent Template
when you subscribe.
This Word template includes essential sections and prompts to complete your own Letter of Intent. In addition to a Will and Special Needs Trust, the LOI shares the wishes, dreams, hobbies, skills, fears, and favorites of your self-advocate to ensure a seamless transition for future guardians and caregivers.
Get your free template today and give yourself the peace of mind you deserve.
Comments