The story of Nadia Bloom’s disappearance and rescue in Florida has made every parent with an autistic child experience something between nervousness and mortal fear. Any one of us knows our child could be in that story.
While our J-Man has not been what you’d call a ‘flight risk’ yet, that could easily change. Our biggest fear right now is that something will happen – like we’re in a car accident – and because he’s barely verbal, he will have no way to communicate with emergency personnel nor understand what they are telling him. Just about any parent with an autistic child has nightmares where our child is in danger and we are powerless to help them.
But what we can do right now is try to prepare as best we can to reduce the chances of harm coming to our children. We might not be able to predict every possible scenario, but we can act to greatly lower the chances of our children ending up in dangerous or life-threatening situations where we cannot help them. I’m sure we all feel a lot of anxiety even thinking about this, but as natural as that is, we can’t let our emotions get in the way of our children’s safety.
I don’t know the first thing about what Nadia’s family did with regard to preparing for possible emergency situations. So this is no commentary on them at all. The ideas below include those that came out of a session we had at school with a local police officer about safety and autistic children, other suggestions I’ve read about, or things we’ve tried ourselves.
[Standard disclaimery stuff – I’m not an expert in this at all. I’m compiling and relaying ideas that I’ve either learned from others or thought about myself, but whether they are appropriate for your family is up to you to decide. You have to set up a system that best fits your family and that offers you the most safety and security. When in doubt, ask your local autism support organizations, police department, emergency responders, teachers, and of course, other parents.]
Know the signs
Your best defense against something terrible happening is to notice patterns in your child’s behavior that may indicate that they are about to try to escape or otherwise take off in a way that could put them in serious danger, such as running off a sidewalk into a street.
This can be very difficult as often we aren’t sure what is going to bring this about in them or what to do to head it off. Try to keep notes about what’s going on each time your child tries to get away from you. Look for patterns. This is largely about data collection, pattern recognition, and using your parental instincts. If signs indicate that they may be getting to where they feel the need to escape, that’s when you act to preempt it as best you can.
Noticing any strong interests, especially ones that get more intense, may help in knowing when and where they may wander off to fulfill those interests.
No matter what, get a medical alert bracelet
Everyone who has experience with autistic children in potentially dangerous situations has told me the same thing – get a medical alert bracelet. We have put this off too long in our house because we thought he’d never wear it without an all-out battle. I know we’re not the only ones to have this excuse. I’ve talked to a few people in recent weeks who thought the same thing, got the bracelet anyway, and after some initial resistance, it’s now an accepted part of their daily life. The good ones are very sturdy and nearly impossible to take off if fitted correctly.
The officer who met with us at school said that if you do anything at all, get a medical alert bracelet first. She recommended having the child’s name, date of birth, phone number(s), and their diagnosis (or diagnoses) printed on the bracelet. She has an autistic son herself, and she said that while it’s very hard at first to get your child used to it, endure it and deal with it as best you can, but get it on them. It saves lives.
Bracelets are available at a multitude of places online in every material and style you can think of. Some also provide the service for an additional fee – like MedicAlert – of having a number an emergency responder can call to get your child’s medical information, etc. Make sure the place is reputable before you buy anything.
An incredible program that is growing is Project Lifesaver. It’s starting to become available in more and more localities in the U.S. and also globally. We have a small program in our county that keeps expanding as soon as they get the funding.
Project Lifesaver has been commonly used with Alzheimer’s patients but has grown to address the needs of others such as those with autism, Down Syndrome, traumatic brain injury, and more. Persons who qualify for the program are given a tracking device with a unique frequency to wear as a bracelet, which emergency responders can pick up and track with specialized equipment from as much as one to several miles away. It was used to locate an autistic girl who lives a few miles down the road from us not long ago.
If your child has already gotten away from you – at home or in a public place – or you are afraid they will, see if there’s a Project Lifesaver in your community and contact them. They do amazing work. There’s almost always a wait list, so get on it if you qualify.
Everything depends on preventing your child from getting out in the first place. You want to build up multiple layers of ‘defense’ against escape. If you can’t stop your child from getting out of your house, slowing them down may buy you the time you need.
If your child gets up and wanders around at night, install things that will either keep them in a defined area or that will notify you if they get outside that area.
We have gates up around the house that are mounted directly to the wall that even most adults who visit us can’t figure out how to open. They could be hurdled by larger kids, of course. Some parents switch their child’s bedroom doorknob around so it can be locked from outside the child’s room. This does present a potential fire escape hazard, though, so really think that through.
You can also install those little stick-on door chime/alarms on interior doors. I found this at Home Depot. It’s listed as a window alarm, but I know people who use it on their doors. At $7 or so apiece, it’s an affordable option.
Exterior doors and windows
Slide bolts and chains on your doors installed out of your child’s reach may be enough, or at least it may be enough to slow them down. The kids who are climbers or master escape artists can get past this layer of defense, but again, it slows them down a bit.
Consider possibly replacing your exterior door locks with electronic or mechanical keypads – and protect the code! These mechanisms are supposed to be essentially impossible to work around without the code, though it’s easy to spend $200+ on one of these, so cost becomes an issue. But this leads us to the obvious problem – our little photographic memory kids could easily learn the code. Protect it with your life and change it often.
And don’t forget your windows, particularly any you have on floors beyond ground level where more than just escape becomes a danger. We’ve taken wooden dowels a bit smaller than the diameter of a broom handle, cut them to length, and shoved them into the tracks above some sliding windows to prevent them from being opened without removing the dowel. They can also be locked, but the dowel provides another way of keeping the window shut. I’ve also known people to drive bolts into window frames they don’t ever plan to open. This can cause potential fire escape issues, so think about that carefully.
If nothing else, get the same little chime/alarms I mentioned above and put them on your exterior doors and windows. At a few dollars a piece, it’s an affordable place to start. If you already have a home security system, you can obviously use it instead.
Outside the house
[I know I’m assuming you have a house and a yard but that many of you live in apartments or dwellings that are in some way attached to others. Most of these ideas can be adapted to those environments with some creativity, however.]
First, get to know your neighbors. Tell them your child’s situation and let them know that if they see your child out alone, stop them, and call you or come get you immediately (or call 911 if you can’t be reached). This can be an awkward conversation to have, especially with neighbors you don’t really know, but it’s something we need to do. A friend of mine’s son got out of the house and luckily was found by a neighbor down the street. To say that this is important is an understatement.
If it’s practically and financially an option, fence in your yard. This is a big expense, but consider it if possible. Giving our kids room to roam and play safely is important, too.
Set up ‘outdoor traps’ in your yard or outside your apartment. I wish I could take credit for this idea as it’s brilliant. Here’s where you can leverage your child’s intense interests to great advantage. This particular parent’s child loves pinwheels. So she put pinwheels on various objects and in the ground in strategic places in her yard. One time he got out, but he saw one of the pinwheels and just stood there playing with it rather than continuing to run. It bought her the minute or two she needed to find him and stop him from going further. Figure out how to take your child’s interests and convert them into a system that will at least stall them or keep them from going any farther.
Determine where in your neighborhood your child might go first if they leave your immediate premises. Pay attention to what your child is most interested in around the area where you live. Is it a particular neighbor’s yard decorations? Is it a pool? Is it a playground? Is it someone’s flowers? Is it a street sign? Think about what in the neighborhood correlates to their interests, but also just note their expression as you go around the neighborhood. Do they perk up or stare a long time or appear very drawn to something in particular when you pass it? If so, write that down and commit it to a map. These landmarks will form your emergency search map of where to look first.
In your car
Especially for younger kids, escaping from their car seat can be one of the worst problems we combat. For kids still in the 5-point harness (like the J-Man), you can simply take the lap part that everything buckles into and flip it over such that the button is facing down into the child’s lap. Everything still buckles together correctly in the models I’ve seen. That in itself may be enough. For other kids, especially those using the regular seat belt, there are covers available that make it difficult for them to get to that release button.
And remember, always enable the child locks on the rear doors of your vehicle. If adult passengers riding in your back seat complain, tell them they can walk home.
Our local Autism Society has stickers available to members that you can put on your car window. This lets emergency responders know that your child is autistic and may not respond to any verbal instructions. Here’s an example of one you can buy.
Proximity detectors and location devices
There’s been an explosion of devices that parents – of autistic kids or not – can purchase for tracking their children without needing highly specialized equipment. You may have seen commercials advertising them. They are not without their problems, though.
Because they often do not operate on unique frequencies, if other parents near you also have them on their kids, you might get all sorts of conflicting signals if you have to look for your child. They also may operate in the same frequency range as other devices such as wi-fi, cell phones, or GPS devices. As the world adds more electronic devices into our lives, these problems may get worse before they get better.
Proximity detectors sound an alarm – typically one you carry with you – if your child goes outside a certain, predefined range. This has its obvious uses, but I still think these are more a last resort. A head start of a few hundred feet might prove difficult to overcome, so I’d rather focus on preventative measures of keeping our kids from wandering away in the first place. Also, these detectors may not tell you which direction your child went in, so if the distance at which the alarm trips is out of your line of sight, this is a big problem. Obviously having the alarm is better than not knowing your child has escaped, but you really want to avoid it getting to this point at all costs in the first place.
Location devices are geared to helping you actually determine the location of your child if they wander away. The extent of the range of these devices vary widely. Your ability to get a good signal can decrease rapidly with distance, especially if there’s a lot of electronic interference or structures around to block the signal. Many of them do not tell you exactly where your child is; you just get a signal of the direction they are in, you follow that, and maybe change directions several times as you home in on them. Of course if they keep going and already have that head start, catching up to them may be very difficult.
Some offer GPS capability, which may be the most promising technology for tracking your children. They can give you the potential of quickly pinpointing your child’s exact location at a greater distance. As with these other devices, this technology is still young and changing quickly. Do your research and keep up with the latest developments if you are considering any of them.
All of these devices obviously rely on keeping the transmitter fastened to your child. So always look at how easy it would be for your children to remove it before you use them.
I’m not completely dismissing these devices as I think they show great promise. It’s just that I don’t think the technology has developed far enough yet to rely solely on them. Having these devices may lure some people into a false sense of security. They may be one useful tool in your safety arsenal, but I wouldn’t rely on them beyond that right now.
If you have other ideas, please post them in the comments. It’s always the right time to think about and discuss what to do to help keep our kids safe.