Posts

As parents of children with autism, we already know firsthand the many challenges associated with keeping our kids safe, both in and out of school. The nature of our child’s disorder often presents a wide range of behaviors that can make their safety our full-time job. Wandering/elopement, PICA, choking, water fixations, inability to communicate in an emergency, and general situational fearlessness mark a few of the many things we face (or simply worry about) on a daily basis.

The statistics from the National Autism Association speak for themselves:

  • Approximately 48% of children with an ASD attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings
  • Two in three parents of elopers have experienced a traffic injury “close call”
  • More than one-third of ASD children who wander/elope are never or rarely able to communicate their name, address, or phone number

I know how easy it is to become consumed with debilitating fear every time your child is out of your sight. When my daughter, Jenna, was younger, I often felt powerless to protect her – or, to even be able to predict how she would react and respond in any given situation. Now, as she’s approaching 15-years old, I understand that while parents of children with autism have to be exceptionally vigilant at all times, we do have resources and options available to support us in our efforts to keep them keep them safe.

Create Your Safety Plan

Every family has their own safety routines for their child with autism. Over the years, my husband, Jonathan, and I have learned and implemented various tools, tips, and technologies into a cohesive safety plan for Jenna. For example, we know that every time we enter a room, we assess available exits and create a strategy that ensures Jenna is continuously monitored by one of us. We keep a window decal on Jenna’s side of the car that alerts first responders that Jenna is unable to communicate her needs in the event of an accident, and we take photos of her, almost daily, in case she wanders off and we need to tell responders what she was wearing.

Aides

Often, parents assume that a 1:1 aide will be able to handle whatever safety issues arise and make modifications on the fly. It is important to be sure that the aide is well trained and equipped to support your child in a variety of emergency situations. Does your child’s aide carry emergency essentials that your child might require (lollipops to stay quiet during lockdown, fidget toys to stay occupied, first aide items)? Has he/she been trained in all safety protocols and equipped to carry them out? Does he/she have keys to the classroom door? What about communication capability (i.e radio, cell phone, office call button, access to the PA system)? Or a wheelchair or “stair chair” to assist in transporting or evacuating your child if necessary?

Other useful resources we’ve incorporated into our safety routines include:

IEP’s

Most parents don’t realize they can have safety goals and emergency plans outlined in their child’s IEP. Always discuss your child’s specific needs with the school administration and Special Education director to put a detailed plan in place.

Tracking Device

We use the SafetyNet tracking device to help keep our daughter safe. Worn on a child’s ankle or wrist, this device ensures that should she wander off while wearing the tracker, police/fire department can quickly locate her.

Similarly, many parents use the Life360 app for children who have their own smartphone.

Alarm System

We installed an active alarm system in our home that instantly alerts us whenever a door or window opens. The alarm enables us to respond quickly should Jenna wander off.  There are many low tech ways to alarm the doors of your home, from hanging bells to installing individual door alarms that you can find at your local hardware store.

Car Locks

Keep those “kid safety locks” on at all times to ensure your child can’t open the car door while the vehicle is in motion. Yes, you will inevitably inadvertently lock your adult friends in your backseat at some point – they will forgive you.

Partnering with First Responders

Our town offers the Erin Program; a program created specifically for special needs families. Parents create an emergency profile for their child to help first responders in the event of an emergency. All personal information is securely stored and not made public. Contact your local police or fire department to see if your town offers this program or something similar.

No matter how many apps we download or strategies we implement, we will always worry about our children and their safety – as all parents do. However, for parents of children with autism, continuously tapping into the resources available to us can deliver the much-needed peace of mind that we are doing everything we can to advocate for and protect our kids at all times.


Susan Parziale is the Administrative Coordinator for Safe and Sound Schools and lives in Boston.

If a crisis occurs in the school or anywhere in public, it can be a very daunting experience for anyone, especially if they are not prepared. But, imagine what it would be like for a student with autism spectrum disorder (ASD). Children with ASD have a difficult time responding to changes or interruptions in their schedules. They not only need structure, repetitiveness and consistent schedules, but they also must have access to the resources and tools to keep them safe.

At The Doug Flutie Jr. Foundation, our mission is to help families live life to the fullest. Through our programs and partnerships, people can access the services they need to lead active lifestyles and build their adult independence. Safety and preparation for a crisis situation is crucial for families to consider. This is why it is part of our core mission.

To give parents peace of mind, or at least help them prepare in case of an emergency, we have supported several safety initiatives including ALEC and SafetyNet Tracking Systems. Through Joey’s Fund, we have funded multiple fences for families who are concerned about the safety of their child but cannot afford to pay for one.

ALEC (Autism and Law Enforcement Education Coalition) is a first responder training program that provides an in-depth understanding of ASD to public safety and law enforcement personnel. We have supported ALEC’s Community Days in the Boston area to spread awareness about this safety program. ALEC’s Community Days allows individuals with ASD and their families to meet and interact with police, firemen and EMS in a non-emergency situation in their community. More information can be found through the Arc of South Norfolk at http://www.arcsouthnorfolk.org/alec-first-responder-training.html

8103229478_dc00b6c127_b

For over five years, we have also partnered with SafetyNet Tracking Systems (formerly LoJack SafetyNet) to provide children with autism GPS tracking bracelets through the Flutie Foundation’s Safe & Secure Program. This service enables public safety agencies to effectively search for and rescue individuals with autism who wander and go missing. SafetyNet not only provides the equipment for local law enforcement but offers a comprehensive training program to first responders. The program allows first responders to become familiar with the communication challenges an individual with autism may have and can adapt their search to rescue and return the individual home safely.

Another great resource to consider is Life Journey Through Autism: A Guide to Safety developed by Organization for Autism Research. It is a comprehensive guide for parents on safety issues and strategies to consider. It includes an Appendix for School Safety and Crisis Planning. You can download the guide for free at:   http://www.researchautism.org/resources/reading/index.asp#AGuideToSafety

Although we cannot prevent every tragedy or prepare for all crisis situations, we can better protect this at-risk population by educating ourselves and taking advantage of the growing number of safety resources that are available for individuals with autism.

Lisa Borges is the Executive Director of The Doug Flutie Jr. Foundation for Autism.

_________________________________________________________________________________________

Additional Resources

The National Autism Association has a lot of great resources and safety products for parents as well as a Safety Teacher Toolkit for educators in need of wandering prevention tools.

The Autism FYI Organization– their mission is to promote a safe environment for the increasing ASD population in their existing communities and is in the process of establishing a national registry for safety.

Autism SpeaksAutism Safety Project

 

 

Screen Shot 2016-04-12 at 10.23.19 PMWe are an autism family.  We will always be.  Our daughter’s short life on earth was a journey for our family—a journey through autism into faith, hope, and compassion.  Through Joey, we learned to look at the world differently, hold onto each other tightly, and love each other fiercely.  Although her journey through autism came to a tragic end on December 14, 2012, we are committed to sharing with others all that she taught us.  In her honor, we share our experiences and support other families on this journey through autism and work to keep ALL students safe in school.

Supporting Children and Families with Autism

Joey’s Fund is one way that we aim to support families and children living with autism.  We created Joey’s Fund in honor of our daughter’s generous and compassionate spirit.  While living with autism, our family relied on the support of many other families—some with autism and special needs children, and many on a more “typical” family journey.  Providing direct support for other families with autism is our way of giving back in Joey’s name and thanking the many people that supported us during Joey’s life and after her tragic death.  We chose the Doug Flutie Jr. Foundation for Autism as the home for our daughter’s fund.  The Flutie family continues their journey through autism and supports many others along the way.  We are proud that Joey’s Fund is a part of their mission to serve some of the most amazing people in the world:  autistic children, adults, and families.  We are honored to remain a part of the autism community in this way.

Autism and School Safety

Our autistic children––with all of their gifts and challenges––are some of the most precious and vulnerable members of our communities.  Most parents find that sending their child off to school alone for the first time is a great challenge.  Imagine how it feels for the parents of an autistic child.  Like many children living with autism, our daughter could not speak for herself and could not communicate her needs without the help of caring adults and peers.  Our autistic children face all of the childhood challenges and dangers of their typical peers—and exponentially more, because of their autism.

We relied on a well-educated and highly trained school staff to keep our daughter safe on a day-to-day basis; but, it was up to us to ensure that her unique safety needs were provided for while she was in school.  Her physical safety on the playground, in the classroom, and in the cafeteria required constant supervision. Like many autistic children, she loved to wander, was attracted to water, and had complex dietary requirements.  Her social-emotional well-being depended upon the facilitation skills of the staff.  She needed trained, caring professionals to help her play and interact with her peers in order to develop relationships and friendships and help her communicate her ideas, needs, and wants.

And let’s not forget her peers. Joey was young and lucky enough to enjoy true friendships with many of her classmates. Friends like Emilie, Jessica, James (and too many others to name!) were the highlight of her school days. There are no words to express the gift that Joey’s friends were to her and the family that loved and protected her in this life. Yet even her exceptional peers needed a great deal of support to understand and safely play with Joey. The safety of her beloved friends required the support of an attentive and caring school community.

Not a day goes by that our family doesn’t think about Joey.  We consider ourselves blessed for the time we had with her and on our journey through autism.  We know we are blessed to have her inspiring us in our missions: Joey’s Fund and Safe and Sound Schools, working to improve the lives and safety of precious people like her.

Michele Gay, Executive Director, Safe and Sound Schools
Photo credit:  Cynthia McIntyre Photography