Published onTrisomy 21 Update
One of the most basic instincts in parenthood is keeping your child safe. The job begins as soon as your child is born, offers no days off, and continues through adulthood.
Children with Down syndrome may have specific vulnerabilities that heighten parental concerns regarding safety. Medical issues, such as hearing and vision impairment or gross and fine motor challenges may influence the way you “safety-proof” your home.
Individuals with a limited sense of danger may need extra safeguards against impulsivity in public places, in traffic, or around bodies of water. Those with a trusting nature or difficulty understanding social boundaries may need special precautions to prevent abduction and exploitation.
Then there's fire safety, drowning, wandering, abuse, bullying and internet pitfalls. There should be no topic too daunting to consider, because anticipating and preparing for hazardous scenarios can help prevent frightening or tragic outcomes.
The everyday hazards in your home require constant safety updating. The precautions that any parent takes, such as plugging electrical sockets and affixing bumpers to sharp furniture edges, are no different for the parent of a child with trisomy 21. You should never expect your child’s developmental delay to provide any measure of safety. In other words, if your toddler is not walking yet or has difficulty manipulating small objects, it is still necessary to secure gates by the stairs and place medicines and poisonous materials out of reach or in a locked area.
Your child will surprise you with their emerging capabilities — let it be in exciting new ways and not those caused by regret about the dangers that caught you unprepared.
The need for specialized safety training
So, what factors place children with Down syndrome at increased risk compared to their typically developing peers? Children with Down syndrome may:
- Have a more difficult time interpreting the danger of a given situation, even as they get older
- Not be able to call for help or express details of a bad experience because of limited communication skills
- Hide from loud noises, such as a smoke alarm, or run from an overstimulating environment, like a crowded public event, because of sensory issues
- Not react appropriately or quickly enough in emergency situations because they are intent on maintaining routines
- Be more vulnerable to abuse or bullying because they are taught to listen to authority figures and follow their orders
Five safety tips
Here are some general steps toward a safety plan that you can initiate at any time.
Embrace the help of your community
Think about all the people involved in keeping your child safe. This may include immediate and extended family members, neighbors, school personnel, local law enforcement agencies, your child’s peers, and even your child.
If you consider yourself a private person and have difficulty reaching out, recognize that you will need the help of others at times. Whether it’s to keep a watchful eye, teach your child about safety matters, or respond to a crisis, maintaining relationships with community members bolsters your individual capacity to protect your child.
Create a family safety plan
It is helpful to designate a safety section to your file of important documents. This may include pre-formatted sheets that can quickly be handed to emergency responders to provide identifying and personal information when needed.
You may wish to keep lists of companies that offer safety equipment for those with special needs. And, you may hold on to educational materials that you can use as your child builds on their abilities.
Schedule emergency drills and role-play threatening scenarios with themes appropriate for your child’s level of understanding. Your child will probably think it’s all a game but will learn crucial skills in the process. In addition to what you can teach at home, consider adding safety goals to your child’s school-based IEP.
Teach safety language
Using language to keep your child safe starts when children are young with basic one-word messages, like “stop” and “no.” Your dialogue can gradually become more advanced and include concepts such as safe, dangerous, emergency, trust, privacy, and individual rights. Some children may need signs or pictures to convey these ideas. Public resources are available for you to print out and post at home from organizations like Safe Kids Worldwide and Kidpower.
Teach your child to call for emergency services
Load your child’s cell phone with important contact numbers, use thumbnail photos for speed-dialing, and review who to call in different situations. Review how and when to dial 911.
If needed, obtain a home phone with easy-to-recognize symbolic speed-dial buttons. Register for Smart 911, a service available in most communities that allows you to create a profile with as much detail as you wish about your family, including medical and behavioral information, or photos of your child and your home. The information in your profile automatically populates when you reach a 911 operator and limits the information that your child would need to convey when a call is placed.
You can also enable the Emergency SOS features on your child’s smartphone or install a third-party SOS app. In 2017, the National Down Syndrome Congress partnered with RapidSOS, an advanced emergency technology company that allows more precise locating information to emergency services when calling from a cell phone. They have offered NDSC affiliates a time-limited free subscription to the Rapid SOS Haven app.
Become familiar with community programs
There are special needs disaster registries in most communities, allowing local response agencies to keep information about your child on file in advance of an emergency. There are special needs shelters that provide higher level medical services in the event of an evacuation. This may be especially helpful for those who live in a coastal flood-watch region, high fire hazard severity zone, or tornado risk area.
Project Lifesaver, accessed through law enforcement agencies in many communities, is a non-profit organization dedicated to finding missing persons through radio-transmitter tracking of those at-risk for wandering. Special needs safety education programs may be available through local public agencies or non-profit organizations.
More to come
Upcoming topics in our special needs safety series include: