Parent Stories

I come from a large family and we have instituted a “hand-off” process with Luke – when we are at family gatherings, you look the person in the eye, ask them if they have Luke and they confirm. At that point, that person knows their primary responsibility is Luke, not side conversations etc. We put this in place after Luke managed to find his way out of a house filled with 32 people. It was winter and the neighbors spotted him running thru the woods – no shoes, no jacket, and they grabbed him. I have also put hook locks on all of the doors which at the moment he can’t reach.



Get double key sided dead bolts for every out going door in your house or apt. Never let your child see where the keys are kept. My son has attempted to get out that way. He knew exactly what key to use. Never underestimate your child with autism.



I spoke to all the county firemen and EMT on search and rescue of an Autistic child. I quickly covered tons of material and I also stressed that from everything I have gathered, drowning seems to be the number one cause of accidental death in Autistic children. I stressed to them time and time again, that each and every near water source should be checked as a first priority. I went into full detail about all the other places they could hide…If injured how they more than likely could not respond to EMT questions etc. etc. It was only 2 months later did they get to test their new found knowledge. A 4 year old ASD child wondered off from his house, his parents called 911 after about a 20 minute search. The Fire Dept followed my advice and found him in less than 10 minutes standing on the edge of the River Bank. He was safe and not to happy about leaving the waters edge. The towns Fire Chief called me after the fact and gave me the news. He said that without learning these things, he would have instructed all his men to search the parks and ball diamond first, in the opposite direction of the river!, instead he sent a few to the park and the others to the swimming pool, river and sewer treatment facility. My point is, just one hour with a group of firemen probably saved the life of a child. I volunteered my time, no experts where hired and not a dime was spent. If we can get others to do the same, what a huge difference it could make for the ASD community.



I recently came up with an idea of making magnets with my daughters picture and my husbands and my cell phone on it. I plan on making cookies and going door to door in my neighborhood with both of these. I plan on talking to my neighbors personally, and just saying “hi” and letting them know my daughter has autism and where we live. I plan on leaving them with cookies in the hopes that if they see chrissy, they will offer her a cookie and take her into their car, home and call me. I have had issues with flight risk behavior and my neighbors have had chrissy walk into their home and start eating ice cream out of their freezer and they didn’t know what to do. The next time she tried to do this, they actually would not let her in the house and this was very dangerous!! I have felt weird about talking to my neighbors so I came up with this idea. I hope this idea makes in into your kit, our behavioral supervisor thought it was a great idea and after the news on Benjy, I am going to stop stalling and do it asap.


My daughter wandered when she was almost 3. We were both in the kitchen, I turned my back on her for 30 seconds, to check on the stove and she figured out the dead bolt. The way the kitchen was set up, when I turned and she wasn’t right where she had been, I thought she went into the living room. My husband came into the kitchen seconds later and asked where she was — we noticed the door was opened a crack and we both FLEW outside and went in each direction. She was about 4 houses down, headed for the river. A neighbor yelled, “She’s right there, was just waiting for you to come out.” She was out of the house for all of 2 minutes, including the time it took it retrieve her, but that was the WORST 2 minutes of my LIFE. That night we installed latch locks at the TOP of the door and an alarm. It’s on the door of our new place now too. NEVER UNDERESTIMATE OUR KIDS ABILITY TO GET OUT. 30 SECONDS I had my back turned.


My son is very quick and has little sense of danger. He is 7, I have to watch him all the time, he also just runs away from me in the direction of roads…he completely shuts his ears to warnings. I have had lots of criticism for not letting him have more freedom, but he he is drawn to danger. I turned my back in the playground once and couldn’t find him. It’s all very frightening!


I have had a few incidents with my son heading towards busy streets and still do to this day, he is 10 now. When he was 4 he darted out into the street in front of a garbage truck. We now have to have two people home all the time, so there is someone always home to watch him (he’s homeschooled) and when we go out we put him on a tot along tether for safety (there is a loop at 1 end for an adult wrist and one at the other end for a child’s wrist) this is what we use:


Between the ages of 3-12, the instances of wandering were constant and unpredictable. Once, he climbed into the front seat and jumped out of the car window at a gas station in the middle of a big city while I was pumping gas. He was lightening fast. He would jump into other people’s cars, lie in the middle of the street, run out the door when a visitor lingered there for too long…any opportunity to run, he’d find it and take it. Once, he escaped from his classroom by going out the window and they caught him in a busy intersection. One day, his grandmother and aunt were watching him (to give us respite) and he disappeared because they just didn’t get it when I told them that they had to watch him every second – the whole police force was looking for him. One of the worst days of my life. Getting a call from the police that your child is missing is horrifying. He was found several blocks away hiding under a sliding board. Thank God. Over the years, we’ve done literally everything to keep him safe. We took out a loan to put up a 6′ fence around the entire yard, had a security system put on every door and window in our house…it is hard. Sometimes you even find yourself doing things that you really shouldn’t – like nailing windows shut or putting key locks on exit doors. You have to weigh the horrible thought of things like “what happens if our house catches on fire – we’re locked in here.” Try to avoid doing things like that. You learn to do whatever it takes. I used to sleep in front of his bedroom door so I’d know if he came out. Some parents even have to take their kids into the bathroom with them because the kid will run off during that short time period. When your kid is a constant runner, you can’t even take a shower until someone else is there to watch them. It’s just a reality that we have to learn to live with. I consider myself to be a seasoned parent and very fortunate that I am still married. Many marriages end due to the additional stress. My son is almost 16. But still, I can’t turn my back for a second without fearing that he’ll run off. I am always on the lookout. Never take for granted that others are going to be as vigilant as you are. Believe me, parents in this situation become hyper-vigilant. We hear everything. We never fall into a deep sleep. We are under constant stress and often the rest of our family suffers for it. We become so focused on the safety of the child with autism that we lose sight of everything else. It is draining. That’s why it’s important to find reliable respite so that you can get some rest once in a while. Parents must find a hobby or some kind of non-autism related activity to do regularly. You cannot live autism 24/7. If you do, you’ll eventually crack and then you’re not going to be able to help anyone.


I find myself so attuned to EVERY sound in this house. My son is 4 and has no fear…we would take a walk to the pool down the street from our place and he would be in the wagon, with a wrist tether (walmart 6$) and his life jacket already on him. My mom thought I was being overprotective, until one day when we went to the pool and I had to take the wrist tether off to get a younger one out of a stroller (I have 4 kids, he is my 2nd and the only one with autism) and he was gone in the 30 seconds it took me to unbelt my daughter…that was with me and my mother there…he was already was deep in the pool…thank goodness he was wearing his life jacket…who’s paranoid now? Sometimes you have to hope for the best, but over plan for the EXTREME worse case scenarios.


Window alarms on the doors work, very inexpensive. You can put them on any door or window. They are at the dollar store or Walmart. They are very loud and make a shrilling noise. No way you will not know they have gone out! Worked for me!


I have two very young wanderers….I have key locked all the doors from the inside out. It’s a fire hazard BUT much more likely to have one or both of them leave than a fire happening. Window alarms help, and they also have the Guardian Angel window bars. They are a little pricey but I hear work well. AND I STRONGLY ENCOURAGE YOU TO COMPELL YOUR LOCAL SHERIFF DEPT TO ACQUIRE PROJECT LIFESAVER…both my children wear the GPS bracelets and I just feel safer. Also ID bracelets and introduce them to all your neighbors explaining that he/she has autism, etc.


We used security cameras that were connected to our TV for a while. Both ideas came from “Extreme Makeover – Home Edition”. Neither were too expensive.


We are still trying to figure out how our son at two years old managed to get himself out of the house and into the back yard or (worse!) down the street with all the doors locked and both parents inside. He eventually stopped wandering off but now that he’s 17 he’s starting to show a bit more independence than we’d like. He goes out the door sometimes by himself. He’s nonverbal and we live in an unfamiliar town.

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