Project Lifesaver & Keeping your Child with Autism Safeby MaryTara Wurmser
Jan 16, 2008
Popular Products in Building SuppliesThe Bottom Line Just do your best to keep them safe. Take advantage of super programs like Project Lifesaver and emergency cards from the ASA.
When you are a parent, your child's safety and well-being becomes a top priority. As a baby you child-proof your home, buy the most expensive carseats, and teach them as they get older to never talk to strangers. When your child has Autism, keeping them safe becomes a bit more complicated.
What can I do to protect my non-verbal or limited verbal child?
What can I do if my child wanders or has escape & elopement issues from my home?
What if we are in a car accident and I am injured while my disabled child is in the vehicle?
These questions above are just a few of the many questions that keep me awake at night and are the cause of many grey hairs. Truthfully - these issues haunt me and I hate that I even have to "go there", but the reality is I do. What makes me feel better is knowing that there are safety precautions or "safety nets" you can put into place to help protect your child on the Autism spectrum. Doing these things doesn't replace my job as a parent to protect him, but it allows me to at least get a bit of sleep at night. As for the grey hairs, well - that is what hair dye is for.
My son has limited verbal skills that would pose a serious problem if he were ever in a situation where he needed to provide his name, my name, or where he lived to someone in order to "get help". He knows his name and where he lives but his limited verbal skills and difficulty with "Wh" (who, what, where, why, when & how) concepts severely impact the way that he interacts with others. His verbal challenges are not uncommon for someone on the Autism Spectrum, and some children with autism are non-verbal and cannot speak at all.
At the same time, my son also doesn't recognize or understand the concept of "strangers" verses "safe people". The same kid who may not be able to tell his name and number to a police officer may willingly go off with a stranger or wander into a dangerous situation. He lacks the self control and judgement that "typical" children and adults would have to know not to run into traffic, dart into the road, or leave our home without an adult (with or without clothing on). His actions are not a reflection of our parenting (or some may jump to conclude a lack of parenting). He acts the way he does because it is who he is, because he has Autism.
I recently attended a workshop put on by Dennis Debbaudt called "Autism Shield". I attended the evening workshop aimed at parents and providers and focusing on Autism & safety issues. Debbaudt also provided 2 workshops aimed at educating law enforcement officers and emergency responders around these issues. His website at www.autismriskmanagement.com provides a wealth of information. It was after attending this workshop that I decided to start working on this advice piece on the same topic, in an effort to share my experience with other parents.
Here are some things that we have done to keep our son safe:
Get road signs put up in your neighborhood indicating Autistic Child in Area
We live in a relatively quiet suburban neighborhood, but on the corner. Our neighborhood gets some traffic as a result of people cutting through and driving way too fast to try to avoid traffic lights on nearby main drags. There are no less than 5 children within the distance the size of a football field that are on the Autism spectrum. Our local police department has put up signs in our neighborhood indicating "Autistic Child in Area" as an effort for motorists to SLOW THE HECK DOWN and not blow through the 2-way stop sign. Different municipalities have different procedures to go through in order to get a sign (or signs) installed. In our case, myself- and another mother in the neighborhood, simply called the police department Traffic Safety division and they came out and put up the signs in both directions surrounding our homes.
Department of Motor Vehicle Disabled Placard
Parking Lots have always been challenging for my son. He is prone to darting, running, and flopping - all of which are a bad mix in a parking lot. He also went through a phase where he wanted to stop and read every single letter on every license plate on the way into wherever we were going. It became apparent that we needed to minimize the stress of parking lots and keep him as safe as we could. Our answer was a Handicapped/Disabled placard that can hang from my rear-view mirror. Like the road sign, the procedure to apply for a DMV tag varies. In most cases you need to take medical proof of the disability (Autism is a neurological impairment) to your Department of Motor Vehicles or Town/City Hall and fill out an application.
Autism Society of America's Safe & Sound Packet
The Autism Society of America has created an amazing tool by parterning with emergency responders & police called the "Safe & Sound Packet". You can buy these materials by making a $4 donation to the Autism Society of America, at www.autism-society.org.
The packet includes the following: a window cling for your vehicle that alerts emergency responders that there is an occupant with Autism. It has an "Alert" signal (yellow triangle with an exclamation point on it) and says in big letters
In Case of Emergency. Occupant with Autism.
There is a companion document that they also provide called a "Personal Information Record" that you can fill out with specific information about your child, their behaviors and capabilities, as well as emergency contact information. In the case of a motor vehicle accident if you as the driver are impaired the Emergency Responders on the scene can use this vital information to be more prepared in handling your child.
In addition to carrying a CHILD ID on me that has a current photo of my son, I decided it was important to me that he have ID on his body that he cannot remove. Much like a medical-alert bracelet, my son wears an ID bracelet that says on the back of it "AUTISM" and "SPEECH IMPAIRED" it also lists the food allergies and medical conditions he has. It doesn't have his name on it or my name but it does have my cell phone number listed "In case of emergency please call:" I got this bracelet for just a few dollars from an eBay seller who I have been dealing with for years. It has a train on the front of it because he likes trains, so he readily wears it (other patterns are available). Every year I buy 2 of them - so he can wear one and I keep the spare in case it somehow falls off or gets lost. My son wears his bracelet around the clock, even in the bath.
My son has no problem with wearing a bracelet around the clock but due to sensory issues I know many children with Autism cannot tolerate this. There are also ID tags that can be fastened onto your child's sneakers or shoelaces or temporary tattoos you can use. I recommend you check out this website for excellent child safety and identification items: www.mypreciouskid.com The My Precious Kid site, and also the One Step Ahead catalog sell beeper/alarms you can clip onto your child's shoes that are pretty affordable though I personally have not tried them.
In addition to the ID bracelet that my son wears I also carry a CHILD ID card with his information in my wallet. The police set up a mobile unit at a local county fair in my area each year and provide the CHILD ID service free of charge to anyone who attends so I have these cards for both of my children including my neurotypical daughter. My son's school pictures also has a program where they provide an ID card with every child's pictures - though the photo is not too great as school pictures can often be. Many local police departments run Child ID programs and also finger-printing. If yours does not, you can make your own CHILD ID using a template from an online site like: www.amberalert.com
Project Lifesaver (or related) Tracking Programs
When I found out about the Project Lifesaver program and that it was in my area I immediately enrolled my son. Project Lifesaver is a rapid response and recovery program for individuals with Autism, Alzheimers or other disabilities that have wandering and elopement issues. I first learned about such a program a few years back on the CBS "Without a Trace" episode about a child with Autism who ran off and hid during a class trip. At the time I looked into the CareTrak ID program and the costs were quite high at over $1500 for the equipment as well as ongoing maintenance fees. Project Lifesaver uses the CareTrak technology but the police departments house the equipment so it is more widely accessible. You may have heard about it on the Extreme Home Makeover show. With Project Lifesaver since the police house the tracking equipment the fees are minimal. Obviously the exact fees may vary from program to program where you live, but for us it is under $20 a month for my son to be enrolled in Project Lifesaver which covers supplies (a new wristband each month and a new battery).
To inquire about Project Lifesaver you can check their website (referenced below) or call your local sherrif or police department. It happens to be that in New Jersey it is available in every county. New Jersey also has one of the highest Autism rates nationally. To get started with Project Lifesaver I called my County Sherrif's office and they sent an officer out with application paperwork pretty much right away. My son was accepted into Project Lifesaver as he has Autism and also a history of getting out of the house despite child-proofing, locked doors and even a deadbolt at the top of the door that required quite a bit of maneuvering on his part. When he got out it wasn't due to lack of supervision, it can happen at any time no matter how much you are prepared. I'm just thankful that he was quickly recovered and hadn't gotten out of our front yard. At the time he was only partially clothed, as is often the case when a child with Autism wanders - they may be nude, have no shoes on, or no jacket.
After completing the appropriate paperwork my son was set up with a Project Lifesaver wristband. The wristband has a transmitter on it that sends a signal at all times that can be used to track him in the case of emergency. In the case of an emergency I can call 9-1-1 and they have a record of his transmitter ID so the rapid response and recovery team can track him. The bracelet looks like a small disc (or a faceless watch) and it is strapped and locked on his wrist with a secure nylon band that is difficult to remove (you would need Dura-Sheers). Every month an officer who works on Project Lifesaver comes to our home or to my son's school and changes the battery out of his wristband. It is our job as a parent to check the signal twice a day using a special receiver that lights up (it looks like a pager). Knowing that he has the Project Lifesaver ID has given me some peace since the program has a high success rate of practically immediate recovery of wanderers.
For more info:
Of course I pray that we never have the opportunity to personally test out just how fast the recovery is.
Here is a link to an excellent resource with many links and articles about Autism safety that was written by Epinions member bonniesayers: