This post was originally published in December. In light of all the recent tragedies in the news about autism and wandering, take the time to read this blog. There are some very useful ideas here that could potentially save a life.
Today is my son Ronan’s tenth birthday. I am so grateful that he is here today so that we can celebrate his life and the joy he brings to us. Just over a week ago Ronan wandered from our home—terrifying thoughts ran through my mind the moment I discovered he was gone.
The second I knew Ronan was missing, I knew that the first few minutes were going to be the most important. I was already thinking ten steps ahead of what I needed to do praying Ronan was just right outside our front door. I knew in my heart though, that he wasn’t.
As I was being connected to the 9-1-1 operator, I did a sweep of our driveway and the most immediate area along our road; I knew was too late to conduct the search by myself—Ronan was nowhere in sight. It was cold, the sun had set two hours prior and without street lights on our street, Ronan literally could have gone in any direction.
I relayed the important information to the operator—that Ronan slipped out, that he is non-verbal and that he has autism. The police and sheriff’s department arrived at my house as I hung up with the call center. The deputy on the scene took over as other units started their search. Because we have a neighborhood pool close by, a squad car was immediately sent there. We all know that the research shows that children with autism wander, and that many of them find their way to water sources. Because of that info, and how dark it was outside, a K-9 unit also sent to aid the search for Ronan. Those who had just arrived were on foot and fanned our street with my neighbors.
Neighbors, who had started the search as quickly as they heard Ronan had wandered off, were with my other children who had just been tucked into bed. They grabbed coats and pushed their bare feet into their shoes as they heard me yell for Ronan knowing how dangerous this situation was. Ronan’s siblings raced to three neighbor’s homes banging on their doors begging for help. Adults and children were on our street looking through front and back yards, in between bushes and in every possible place Ronan could have wandered.
Through quick thinking on several people’s part, Ronan was found safe just down the street from where we live. To say that the experience was anything but a nightmare is an understatement. The search couldn’t have been more than 20 minutes, but time stopped in those moments I knew Ronan was gone. Ronan was found several houses down with a neighbor we had yet to meet. Of all the people on our street, Ronan picked someone who knew sign language. In her attempt to figure out what Ronan was signing, which kept Ronan stationery for a few minutes, it gave our rescuers time to find him and bring him home.
How I wish I had never lost that time with Ronan. In twenty minutes I had him vanished, dead and forever missing from our lives. Ronan is my pride and joy and is inspiration for so many of our family and friends. He still lacks so many skills, knowledge of safety being the scariest one, so it was an awful mistake to not check the locks like I usually do. That is one task that I will not soon forget. Please, do not think that I am blaming myself (even though I am, because it was I who forgot to lock the door), but yes, moments like this, with proper support in place, could have been prevented. So, in order to lessen the wandering possibilities, I want to share that several measures can be considered and put in place:
Preventing nightmares like this from happening are possible. It’s very well known that the wandering potential is very great for our kids. From the AWAARE site,
- Roughly half, or 49%, of children with a autism attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings
- More than one third of children with autism who wander/elope are never or rarely able to communicate their name, address, or phone number
- Two in three parents of elopers reported their missing children had a “close call” with a traffic injury
- 32% of parents reported a “close call” with a possible drowning
- Children with ASD are eight times more likely to elope between the ages of 7 and 10 than their typically-developing siblings
- Half of families with elopers report they had never received advice or guidance about elopement from a professional
Our friends at the National Autism Association understand this great risk and offer assistance through their Big Red Box program. Those who have family members who wander can request one of the boxes from their website. In them is detailed literature about wandering and also products to help deter it. A kit for first responders is also available online. I’ve been fortunate to have several conversations with the NAA ladies when Ronan first eloped several years ago which significantly decreased the chance for Ronan to wander.
While some of the measures to prevent wandering were in place in our home, mistakes were made last week and caused Ronan to easily slip out of the house. I’ve added some new strategies to again review how to keep Ronan safe, and to ensure we have a better plan if ever this happens again.
Here are some ideas that might help other families who have a child who wanders:
– Have a plan in place should your child have the potential to wander
– Add a lock out of children’s reach at every door that leads to the outside world (for those of us with typical children too, find a way for them to be able to unlock the door should an emergency occur in the hope that requires them to evacuate the house quickly) and ensure locks are used
– Place audible alarms on every door and window (these can be found at hardware stores or set up within a monitored home alarm system)
– Place window wedges on the side of every window to prevent opening
– Research a tracking device (there are SO many options now; my first suggestion is to research Project Lifesaver or LoJack. You can go to their websites to see if they cover your geographic area. If they are unavailable, you can purchase similar products with a GPS or similar tracking device. These products may not be monitored by your local police force or sheriff department, but may prove helpful in a search.).
– Tell your neighbors about your child’s wandering potential including where they might go and what that neighbor can do to safely approach your child; introduce your child to these neighbors and give them an index card of your child’s picture; get those neighbor’s phone numbers to place on a phone tree
– Enlist a neighbor to be an assistant—make sure he/she will not be distracted by emotions in order to speak for you should you be unable to; this person can also be the one who begins the phone tree to your other neighbors
– One friend suggested placing a distraction immediately outside the door—she had a fountain that her child was attracted to in her front lawn. Because he was instantly drawn to the fountain, he rarely wandered far and was able to be redirected safely back inside
– Have a search and rescue bag by the entry way
The search and rescue bag is something I did not have at the ready last week. This would be visible or easily accessible at a doorway and able to be quickly grabbed and already filled with items you might need should you have to bolt out of the house to begin the search before officials can get to you. Everyone in the home who will be able to assist in the search should have a bag.
I found bright yellow backpacks that we can easily put on with the following items inside:
– flash light and/or head lamp
– laminated picture of child with child’s height, weight, date of birth, address, phone number, parent/guardians’ names, medical diagnosis, Medic Alert ID number, Project Lifesaver (or other device) frequency information
– snack (or toy) that the affected child will be drawn to so that the rescuer can make contact and encourage them to return with them
– walkie talkie to keep in contact with whoever is speaking to the first responders on scene
Last Tuesday night was one of the most frightening nights I have experienced in my life. When we were back in our home, safe from the terror of Ronan’s wandering Ronan was unaware of how grave a situation he was in. I held him tightly. I showered him with hundreds of kisses praying thankful prayers as I wept knowing we came very close to losing him forever.
I don’t doubt that we’ll be faced with other heart-stopping situations in the future—its’ the nature of how affected Ronan is. But, with better awareness, and with more thorough plans in place should we encounter another God-forbid moment, I can be that much more prepared to keep Ronan safe and home with us instead of lost and alone in a world he is not ready to navigate.
~ Mamacita
To read more blogs by Mamacita, Click Here.
For more information on autism and wandering, please visit these sites:
Hello! My name is Jasmine and I am a senior industrial design student at Philadelphia University. For my thesis project, I am creating an assistive wearable device for children with ASD with the goal of preventing ASD related wandering.
If anyone would be willing to fill out a survey for me- whether your child has wandered or not, I would highly appreciate it!
Here are the questions:
Child’s Name:
Child’s Birthday:
Your Name:
Your Relation to Child:
1. I’d love to learn a little more about your child! What are his interests? Where does he like to go? Does he have a favorite toy? Use the space below to share any fun information or pictures* of your son having fun ☺!
2. Please explain your child’s diagnosis and the characteristics associated with it.
3. Please describe a typical day. Are there specific times of day that are especially challenging? If so, please describe. How does your child’s ASD affect their daily life?
4. Does your child require special assistance at home or at school? Do you have any assistive devices or tools you use at home to help your child?
5. Has your child ever shown signs of wandering associated with Autism Spectrum disorder? According to some studies, children with ASD are 4 times more likely to wander into dangerous situations compared to children without ASD. If this has been an area of concern, please explain any specific situations or any precautions that your family has taken to prevent wandering,
6. Please use the space below to add any comments that you would like to add that might not have been covered by the questions above.
Thank you so much for your time. I look forward to hearing back.
If you would be willing to talk further either in person or via skype or a phone call, please let me know! I can be reached at [email protected] if you are interested.
Jasmine, have you considered putting it online in a “SurveyMonkey” format maybe? If people have a link where they can go and answer some simple questions, you get more responses. If you do that, send us a message on our Facebook page and we well share it there.
Hello everyone,
My name is Jasmine and I am a senior Industrial Design (product design) student at Philadelphia University. For my thesis project, my goal is to create an assistive device that addresses ASD wandering. I think it is a very real and sad reality, and as an outsider, I need to gather as much information and first hand understanding. I read the blog post and all the comments thoroughly, and it further motivated my work.
If anyone would be interested or willing to talk to me further about your experiences and insights, I would be more than appreciative. My email is [email protected]
Thank you so much.
I wish you all a safe and fun halloween!
Wonderful, Jasmine! I suggest getting in touch with SafeMinds and the National Autism Association. They are the two organizations MOST involved in the day-to-day tracking and advocating on the subject. Lisa Wiederlight is the Executive Director of SafeMinds and she would be very interested in your project. I will give her your email address.
This is such valuable information. Thank you!
I look forward to hearing from Ms. Wiederlight!
After being trained in Project Lifesaver this May, I am convinced it will be the defining force of the future and safety of our loved ones. After the death of Avonte Oquindo, Legislation may very well bring Project Lifesaver to everyone who needs it. Lets pray it does.
Project Lifesaver
.http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0CCsQFjAA&url=http%3A%2F%2Fwww.projectlifesaver.org%2F&ei=RjKWU5ztOdGRyATx_YHwAg&usg=AFQjCNGqFSBrNxa1GIQRnCTMK0dU8oJdyg&bvm=bv.68445247,d.aWw
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Since it summer and our kid are outside a lot, I think we should put an email alert to all Police Chiefs, LE, SAR and first reponders to be on the lookout for children with Autism wander. States are far too slow to educate or fund training for LE on this issue. We could get the autism wandering info out via email in a nano second. Maybe work through National LE associations, Search and Rescue groups and other first responder groups to get the message to their members. As a mother to a son who has a history of wandering/ bolting we’ve had many close calls so I am very concerned about wandering. Wandering awareness is matter of life and death. I consider it a seriously high priority issue.
That was a terrifying event, but I’m glad that he’s safe. I’m overwhelmed that there are people who are willing to help during this scary life situation. It’s not easy to have gifted kids, they need extra care and special attention to fulfil their needs and parents should be aware of them especially to making them safe anytime, anywhere. The tracking device is a great idea but to those who can’t afford there’s this kind of bracelet where you can put essential information about the kid e.g. Name and contact person in case of emergency and that’s pretty ideal for parents out there.
This week in Oregon our legislature passed a bill similar to Washington and California that will mean to get vaccine exemptions even for religious reasons, we will have to pay for a doctors appointment and get one to sign a document stating we were informed of the risks of not vaccinating.
While trying to deal with this and what our next action should be I am notified that near Ashland, Oregon, two nights ago taxi driver noticed someone walking down the side of I-5, naked. He pulled up next to her and she looked in his car and smiled at him and then continued walking. He drove down the pull-off lane next to her while calling 9-1-1. He stated she seemed to be on a mission, and while she seemed in a fog she was not acting irratic or impulsive, and he questioned whether she might be on drugs, or perhaps had been assaulted, raped, something and was in some sort of shock. He thought she was disoriented in some way.
An Oregon State Trooper arrived, a female, and called out for the person to halt, but she continued on in her own little world. She yelled for her to stop again and nothing. I hope your sitting down for what happened next, the officer shot a tazer into the back of the girl. She arched back as if having a seizure and then face-planted into the gravel and concrete at the side of the highway. As backup arrived the girl was handcuffed and thrown over the hood of the taxi cab and arrested. Despite the state police attempts to refer to this girl as a woman or young woman, she is neither. She is 11 years old and she has Autism. It was 4:00 a.m. and she had eloped from her home and everyone was asleep and did not even know she was gone. A state police trooper who has obviously had no training in recognizing autism, hell, apparently she was incapable of distinguishing a pre-pubescent girl from a grown woman, went tazer first, think later. The state police are now claiming that tazing this girl saved her life, despite the taxi driver being appalled at the actions of the trooper and stating she showed no intentions of wandering into traffic. The troopers first instinct was not to sweep the girl into her arms with her coat or a blanket and lead her to her car. Perhaps she had an aversion to touching someone naked, but there is no doubt that this action is a travesty. The little girl could have suffered brain damage from slamming her head into the pavement or the tazer could have caused heart failure.
We all know of teen-agers being beat or arrested because police have little to no understanding of autism and interpret their actions and answers or lack of speech as defiance, being a smart-ass, unstable, dangerous. I have contacted Oregon first responders and volunteered to do a presentation and I do not even get a reply. It is willful ignorance and I grow more terrified every day that it could be my child. I find it hard to see them as rescuers, saviors, protection these days and instead see them as a tazer, accident, or the death of my child, simply waiting to happen because of their willful ignorance and refusal to understand these children. 1 in 50, over 9,000 children in Oregon with Autism and no effort for the most part in trying to proactively understand, recognize, or know what to do when confronted with someone with autism. This is only going to get worse. I want to give my daughter more freedom, she has come so far, and my greatest fear should not be what happens if she has an unexpected interaction with a police officer!
Our children’s unusual behaviors, words, or actions can easily put them in the spotlight or bring them to the attention of police. The boy who is nervous and having trouble saying what he want and the officer says “come on, spit it out” and the boy literally spits on the ground. The officer flips out and throws the child to the ground and handcuffs him. An officer might ask my daughter an innocent question, “What is your name?” She will most likely launch into her typical explanation of her many names and nicknames which she seems to think are part of her “official name”. Quite innocent really but could easily be interpreted as evasive, trying to confuse, and just not answering the question asked. Even this simple interaction could end poorly due to failure to identify autistic behavior and over reaction by police that expect respect and unwavering compliance with their requests.
So it is not just us who have to be prepared for wandering, we must insist that or first responders receive training. We must insist that they understand to search water first when our children wander. They must understand that there are 1 in 50 children out there that may not understand you are talking to them, not understand exactly what you are asking, not be able to follow directions properly, may sound like smart-alecks because they answer your questions literally by what you asked not by what you meant. They don’t understand protocol, inuendo, idioms. They may not understand that they simply cannot walk away from the officer until they are given permission to do so. I am so afraid. I hate seeing the police as potential abusers, tazers, and killers of my child simply because they refuse to know and understand.
We have a lot of work and a long road ahead of us Thinking Moms. But it is work that must be done so not only will our children be found safe when escaping our homes, but so they can actually be safe when outside of the home. I hate to think I have to tattoo my child’s forehead with “I HAVE AUTISM” to simply hope she is safe.
Thank you for this, we had the exact same experience for the first time recently. I had posted it on my blog but after a week or so I began to worry that ppl were judging me or something so I took it down. My husband had the fence open while he was working on our vehicle and he was so disheartened that he actually cried for the first time that I have ever seen. We were lucky that the person who found him was a good person and happened to know his former teacher aide who actually used to come over and help me when my second child was a baby. They saw he was autistic so they called her to see if she knew him. I can’t describe the hole in my heart when that happened. Holding my two year close in my arms while I was walking fast in the almost dark sky (my husband in truck, me on foot)…I was so worried he had gone to the river and we live near a train track and a dangerous highway. It was really nothing short of a miracle that he did not walk into the street. My son is six. I am going to be doing this stuff today, thank you for sharing.
I LOVE the idea of the grab bag and the front yard distraction. Despite all of our best efforts, elopement is still a real possibility. It is beyond terrifying. I’m glad Ronan was recovered safe and sound. I agree about enlisting the neighborhood. All of our neighbors are very aware, and have actually stopped an elopement situation before it started. Also, the last time my Rosie got out, she was found by a neighbor.
I do have a question regarding the kit for first responders. That is the area that is lacking in my community. At least in regards to their knowledge of autism. Should I print out the pdf booklet from the link, and deliver it to my local police? I would also love any insight on how to get Lo Jack or Project LifeSaver to cover my area? We have tried several personal devices that we would monitor ourselves, but Rosie is a Whodini, and has been able to remove every single one of them.
Thanks for the article, and this amazing blog!
I would print the kit and bring it to the police station. It gives you the chance to introduce yourself and explain the real need for their help should you have to call them for assistance.
Something else that may help is to check out the AutismOne conference files. They haveoffered a First Responders tract in past years during their week-long conference. Follow this link to see that info: http://www.autismone.org/content/first-responders-0
From what I understand, Project Lifesaver is specific to certain geographic ares. I believe LoJack is as well (I am not too familiar with LoJack as we have not used their services). The Project Lifesaver program utilizes our local sheriff’s department’s manpower when the need arises. Getting the program in your locale may take some work, time and funds. We were grateful to discover our county had adopted the program. We pay a minimal fee for support. Their website will hopefully lead you to someone who can answer more specific question and let you know if they work in your community. Some civic groups have been helpful in defraying costs for the initial cost (the band and tracking device) so do ask the PL rep for info on that as well.
Wishing all of us, especially our children, safety and peace of mind.
~Mamacita
When LoRenzo was 5, he learned to unlock the door. I was in the kitchen making my children lunch, my daughter and I just talking and oblivious to the fact that he escaped. The pounding on the door got my attention, a neighbor had him by the wrist, and basically thrust him through my front door. She looked me up and down and saw I was still wearing pajama pants and she yelled “were you sleeeping?!? Your kid was walking down the middle of the street! Oh nevermind!” She turned on her heels and went back across the street. She never once in the 5 yrs that I lived in that hood introduce herself or try to get to know me or the fact that I had a child with autism. I closed the door still unable to speak and hugged my son because the terror of what might have happened was too much. I could not take my anger out on this woman who misjudged my single mom of two attire. I couldn’t tell her what an ass she was for assuming I was a terrible mother. I couldn’t because she brought my son back. I’ve had terrible nightmares ever since that LoRenzo has eloped and drowned. I wake up crying and heartbroke. I can’t be a better mother, I can’t. But I can take extra precautions now and maybe just maybe the nightmares will go away. Thank you.<3
We were fortunate with some genuinely concerned and very helpful neighbors. The lady who kept Ronan occupied while trying to sign with him while the search got underway was invited to Ronan’s tenth birthday party. I wish other families were as respected as we felt we were after this scary experience.
~Mamacita
This happened to us, when my in-laws were watching our two children. Because they could not pinpoint exactly how, or when, my son had eloped, police and fire began their search by completing a top to bottom search of the entire house. Every closet, cupboard, container, etc. that might contain a 5 year old was opened and dumped. When I got the call to come home ASAP, I found every neighbor outside calling my son’s name, searching, looking. Desperation was palpable. In the meantime, my autistic, nonverbal son was 2 blocks away, swimming naked in a neighbor’s pool. Worst day of my life, for sure. So glad your story had a happy ending as well. Thank you for sharing your plans and resources. So important!
Last summer we were at a birthday party held by my family at a camp that has lakes and my family rents tents. As soon as we got there my daughter asked when we could go swimming. My reply was, after lunch we will put our suits on and go to the lake. She was almost 4 and just began to dl grasp the concept ” first and then”. This was exciting for me we had been working on recovery for almost a year and she had already made great strides…. Yet I digress. We eat, I get her in her suit and shout to my fiancée to please watch j while I put min on. As I come out of the tent I see Aaron, my fiancée helping my aunt w something at her tent but no j. Instantly I freaked out. One out if many of my family, myself and Aaron began frantically looking for her. My idiot 40 something year old cousin says, “oh I saw j walking that way” and points to the lake ( the reason age always mentioned is SHE SHOULD HAVE KNOWN BETTER). At that point my heart stopped. And I ran, faster the I have ever run in my life, across a field, over a hill, and across a street to the lake where my little girl was walking chest deep, in the water of a fishing lake!!!! This all transpired within two minutes or less. I never squeezed her so tight in my life…. After I thought how smart she was, she had been told yes, once we eat and get our suits on we can go swimming, but also how literal she is and how scary and unsafe that can be.
I have constant thoughts running through my head 24/7/365 about dis-ease etc.
I research and brainstorm endlessly–I have constant ideas ,debates, and hopeful plans going on in my head all the time.
I often will stop whatever I’m doing and quickly start writing so as not to forget what seems for that moment like yet another scathingly brilliant idea before it passes into the wasteland with all my past genius of dead ends.
There are times when I think:I am so smart, of course I will figure this all out.
Look at me, I’m like Einstein figuring out the principles of relativity of disease AND cure with equations and all that scientific stuff.
And than I remember that my and other’s dull thinking and sheople behavior is what got past generations and us all in this mess in the first place.
Who do I think I am, really now?–I’m just another hysterical desperate Mom who is on the lowest level of respect to others who see me as a crazy woman with delusions of grandeur that I could ever truly make our family well, recovered.
I am so frustrated after all this scheming to still not have: and they all lived happily ever after ending to this nightmare.
So, I want to pause and stop thinking about all the madness just long enough to say :
Much love and many blessings to all of God’s Creation.
May good health and well being and the best life possible be the fate of all living beings.
I wish for all : love, forgiveness, peace, joy, hope, and for all to be safe and have what is needed to be comfortable and prosperous in all ways.
Let 2013 be the year that we all find what we are seeking and truly deserving of, that all the powers that be finally do the right thing.