I had hoped to participate in the flash blog for the family of Mikaela Lynch, (I linked to her aunt’s post there.), but I found myself overcome with too much emotion. I was unable to find words. However, others were able to share here An Outpouring of Love for the Mikaela Lynch Family. I held back more tears as the news came in about two other children who had wandered and lost their precious lives too. Deaths of 3 Autistic Children Call for Better Anti-Wandering Protocols.
Even now, the tears are welling up and I am trying to get the words out.
My thoughts, prayers, and heart go out to these families. I was shocked and deeply troubled by some of the negative responses that were being said when a family needed community support the most. People need to become more aware of the dangers of wandering and we need more understanding with positive action. Inner Aspie shared a post Autism & Wandering Awareness-Guest Post By Sheila Medlam Founder of the Mason Alert Foundation that I feel is an excellent article that gives information about Mason Alert. Inner Aspie shares her own experience with wandering/elopement in this post The Scariest Words An Autism Parent Never Wants To Hear.
What I have seen is that when Autism and wandering are mentioned it is normally linked to severely Autistic.
However, in my experience that is not the case. Daniel, though at the times of the scariest events he was non-verbal, had no understanding of danger what-so-ever, barely acknowledged anyone but me, and had no way of communication other than yelling, self-harm, or throwing things. He was still considered “high-functioning.” I have briefly written about Daniel not being aware of danger and wandering. When he was younger, he had no sense of danger and would wander. The day he was almost hit by a car sent terror through my body. I had him, he was in my hands, and it was within seconds that he escaped my grasp because the sounds of dogs barking scared him. I cannot remember what I did, but I managed to grab him before he ran in front of the car.
There a couple of occasions that Daniel got out of the house.
I recall one time I went to the bathroom for only a couple of minutes, though it was a rare occasion that I even went to the bathroom without the three little ones wrapped around my leg, that day it happened. All three children had gone out the locked back door in only a few minutes. I came into the living room to see no one. I went to their bedrooms and nothing. The panic slowly crept as I yelled to David, “Are the kids with you?” My mind can go from happy to worst-case scenario in seconds. It will flash images of everything possible before I can think clearly. I have to filter through it all to think straight. My eyes darted around the room. The gates were up I found it odd. David replied, “No.”
The door was shut, but the curtain caught my eye.
It was out of place. I pulled them open to see Daniel and Joshua on top of the covered kiddie pool. I burst through the doors leaping outside before I could think pulling them off the pool, thinking that I was the worst mother in the world. Joshua was only one-year old and he was going head first into the water. The pool was covered, but rain had filled it enough to where any of the children could have drowned.
It was terrifying.
The other thing that sent complete horror down my spine was that there was a pond only a few feet behind our house. I hated that house for many reasons, but one of the reasons was that pond. After that day, we placed an alarm on the back door so that would never happen again. Another time that sent me into utter panic was when I was loading the washer and dryer. The house was an open floor plan so the washer and dryer were in a closet in the kitchen. The kids were in the living room right there. When I finished loading them, I turned around and did not see Daniel, within minutes Daniel was gone.
I went to look for him in his bedroom.
He had broken open his bedroom window and his window right next to the air conditioner. His obsession with fans was insatiable. (He would run away from me in stores, outside to the back of houses, to people’s fans in their house; if he saw or heard a fan, there was no stopping him.) Thankfully, I got to him before he stuck his fingers into the air conditioner fan in the back yard. Alarms, locks, gates throughout the house, in his doorway, and holding him tight when going out in public was (is) our “normal.”
We no longer need gates.
We still have everything locked in the house, and alarms on the doors. This is another reason why Daniel sleeps with me because he is prone to wandering. Now he knows how to open the doors and he even knows how to turn off the alarms. However, he is too fearful that he may accidentally set it off so he does not touch it unless he asks. If I do not keep my eye on him or cling to him, he could leave me within seconds at certain places. In stores, it has happened and my shrilling voice yelling for him has filled the air. Now that he is older he does not venture far from me, there are still times when it happens though. There is a plus side to his anxiety about losing me. However, when he is overloaded by sensory input or socially he loses awareness of his surroundings and can become confused.
This past year there has been significant improvement with him becoming aware of his surroundings and possible dangers. It has happened through his speech therapy, his therapist has used many problem-solving scenarios with safety and danger because this was a huge concern for me. When we first moved here, almost a year ago, there was no way that I could take him into the front yard. The fears consumed me that he may run out into the speeding cars that go down our busy road. He almost did the first week were here! I am hypersensitive to keeping him in my sight at all times. However, it is not possible to do that each day. I used to wait for David, or take all the kids with me to the bathroom to ensure they were not out of my sight after the “pool scare.” I did not even consider that my non-verbal four-year-old would figure out how to open his bedroom window.
I still do not take showers unless I know that David can be with the kids.
I was a wanderer too. I still am. If I do not make a conscious, effort to stay focused and run scripts through my head I will get distracted and wander. My kids have helped me with this because my responsibly as a parent trumps whatever my wandering trigger is. I caused my mom great fear on several occasions because I left the yard and wandered around the neighborhood. I ran away at the age of five. I also, was a sleep walker and would go out the back door. My mom was afraid one night I would just disappear. In stores, I would be gone in a flash. She became so terrified that I was no longer allowed to be out of her sight when we went places like the store or parks – ever!
She became even more protective than she was before.
Strange though, she would let me play in the yard for hours by myself… as long as I did not leave the yard she was fine. I was drawn to water, my son is drawn to water, and we love water. Not all Autistic’s do, but there is definitively some affinity for many of us. I learned to swim at an early age for some reason my mom made sure of this. Possibly, because she too loves to swim and loves water. Daniel is still unable to swim. I am currently teaching him, but he wears a life jacket. He now refuses to get into the water unless he has one on. He does have a fear of deep water now unless I hold him or he has his life jacket on, I am not sure where that I came from. It started last year.
That is a small bit of Daniel’s story in hopes of bringing some awareness.
Wandering and elopement is a real concern that people need to be aware of and more sympathetic to. I do not believe that it is only severely Autistic people who wander and elope. I could be wrong, but I do not think that I am the only one who may still struggle with this and who also, did this as a child. Here is a little more about my story. I have wandered into places that were extremely dangerous with no understanding as an adult. It was not something that I thought about, I would get a whim of thought or become interested in a person or object and off I would go. I did not think of telling my friends where I was going.
I did not understand until my friends freaked out on me when they could not find me.
They still had to explain to me why they were so upset. I did not learn my lesson when my mom continually told me not to leave the yard. If I became distracted, I was gone. If there was a butterfly, I chased it! I was not aware that I was out of my yard or away from my mom. I was not aware that something terrible could happen to me if I went wandering in the wee hours of the night as a teenage girl and as a young adult. (Or even as a 30+-year old!) I did not really understand danger unless I would get a very strong sense of something being “wrong” in my gut.
Still I was not sure what it was.
I would only hear things in my head like, “Run home as fast as you can!” “Get to your car, now!” That happened on several occasions. There are days when I know that I should not leave the house because my head is too fuzzy and unable to discern my surroundings. There are days when there is no way I will take Daniel outside because he is unable to comprehend danger and he loves to walk all over our yard. I still have to hold him tight in parking lots because he does not understand that the cars could hurt him.
I am fairly certain we will have alarms on the doors for a long time.
I am not sure how long; we were only able to get rid of the gates last year when we moved into this house. We still need to work on these things in therapy. Possibly, he will be better equipped than I was because he is being taught in practical and realistic ways. He is learning how to be safe, why wandering is dangerous, and how to remain observant of his surroundings. It is not a matter of poor parenting, or “should have’s” it is about equipping our community and ourselves. Some Autisics will never be able to comprehend the dangers of wandering. That is why as a community we need to spread awareness and help with ways to educate those who have no understanding. However, we also need people to be open-minded, understanding , and willing to listen.
Please be a part of building into the community with your empathy, sympathy, willingness to learn what it is like for us with Autistic children, and challenges that we face.