Wandering Survey

[numbbears]

All of my local support groups have been passing this survey around. They're looking for people with kids 4 or older with ASD whether or not their kids have wandered:

Wandering by children with ASD and other developmental disorders is a significant safety concern. It is estimated that more than 250,000 children with disabilities wander away from adult supervision each year. Few researchers have looked at this major issue, and there has been little focus on prevention measures and the impact that wandering concerns have on families.

Cohen Children's Medical Center of New York is conducting a major national study about wandering, and we very much want you to participate.

It takes just a few minutes to complete the anonymous, on-line questionnaire. If enough families complete our questionnaire, then:
We will have the most representative study done to date - giving voice to as many families as possible
We can help guide families like yours about which prevention strategies seem to be most effective
We can document the impact that wandering has on families in terms of activities and household stress

www.wanderingresearch.com/

[theycallmemommy]

Thanks for posting this. I answered it and went ahead and asked for the results to be emailed to me.

This is a topic I struggle with. My DS is 6 but we have had 3 very scary instances of him wandering: twice randomly left my parent's house when they were watching him -once when my mom was changing his baby sisters diaper, one other time I can't remember the exact scenario. Once my husband had him at target and they had a pretzel and a drink in the cafe, my husband turned his back on him to throw away his drink and DS was gone. He was found in the laptop aisle about ten minutes later completely unphased. He was about 4.5 with minimal ability to communicate and just smiling. He loves computers:(

I have contemplated a tracking device but just keep hesitating. I am curious as to how others respond to the survey. DS doesn’t wander often because I have every part of his day on lock down so the opportunity is low. I get anxiety with unfamiliar places or doing things that have places he could get lost. I dress him in head to toe neon colors alot. He is weird about wandering though. The times he has done it he is totally unaware of the consequences and very quiet about it because he doesn’t realize cognitively that it would scare me or he could be lost forever. His language is coming around but these concepts are not

[numbbears]

Dec 22, 2016 0:53:15 GMT -5 theycallmemommy said:

DS doesn’t wander often because I have every part of his day on lock down so the opportunity is low.

This is pretty much us. One of us is always with him and ABA is 1-on-1. But wandering gives me nightmares. I've worked so hard on getting DS to pronounce his name just in case.

I'm sorry you had to go through that. I'm sure it was terrifying even if it wasn't too long and not often. DS's line tech left him unsupervised at ABA for a minute. DS managed to get into another area of the center and climb up a metal rack where it fell on top of him. Luckily, nothing was on it, it didn't land on his head, and he didn't have any injuries from it. But it was a reminder of how fast he can get away without anyone noticing and the consequences.

I've thought about electronic monitoring, but I really don't know much about it. I've been meaning to ask local groups.

[mrsbuttinski]

My son didn't elope in the "classic" sense. But he did sometimes "go missing". Like the time we were at the grocery store when he was four and he disappeared to use the bathroom. Or the times he decided to re-do the haunted hike at scouts because it was so fun. Or the times he was supposed to be at camp doing a craft merit badge and blew it off to be a buddy to someone who wanted to head to the shooting range instead.

This was not so much "wandering" as impulsivity coupled with poor ToM. DS had plenty of language by this point, but he didn't appreciate that 1) I couldn't figure out where he was and 2) that I would be distressed by his disappearance because he had to be taught that I don't have access to his thoughts.

DS knew our names and even phone number by the time he was about 3*, but he still scared the shit out of me on a number of occasions.


*Not a brag per se. Times were different. This was pre-ubiquitous debit cards and multiple area codes. Eve so, digit span is a relative strength for DS. I often wrote checks for groceries and would always be asked for my home phone (gosh, remember those?) number- DS heard it so many times he committed it to memory. I became aware of this parlor trick when he started answering for me which folks found really amusing.

[mrsbuttinski]

I was going to share this piece, which is a pretty classic piece of the on-going battles between higher functioning adults with major mommy issues and parents of younger more impaired children. But then I thought it was too much of a downer. But since you brought it up.



www.psychologytoday.com/blog/inspectrum/201612/117-autistic-children-and-adults-who-died-deserve-better

At the very least, I would proactively contact local police and share your DS's picture and description along with a short list of know draws in the community. Some moms I know snap a picture at the start of any outing where he child is likely to wander- it's great to have a picture of a kid wearing his exact outfit to share on the spot.

[theycallmemommy]

Mrsbuttinski, that article might be a downer but it's also truth and a reminder of how fast things can change for a family.

Numbbears, I feel like his wandering, if given the chance is totally random and he would be still, totally unaware that he couldn't just say "mom" and find me.

Unlike the argument in the article of the tracking devices, I would agree with the pro-trackers because my son isn't trying to escape, he finds something interesting, which is scarier because the trigger isn't obvious.

The first time he left my parent's he went to the door step of the neighbor across the street and was found happily jumping up and down. My guess later was that this particular house was a number, he was obsessed with numbers, that was next to my mom's house. So say hers was 422, that one was 421. Two years later he pointed at it and mentioned that it was 421 and grandma was 422... this was my epiphany as to why he might have chosen that house to stim in front of twice. At the time he did it, it really had nothing interesting to it and was actually a pretty ugly house and not as kept up as the rest.

Anyway, I live our lives deciding between opportunity and my stress level. Is the free for all birthday party in a low secure place--lots of doors or places limiting sightline-- worth it or should we decline? Same with my good friends new house on a golf course. HUGE house, 4000 square feet, more than one door outside, no fence because her house is right on the course and is not aesthetically pleasing so no one really had their own yard. The whole time we were there DS was running around with her boys of similar age while I about had a heart attack watching him disappear with the kids and reappear as they tore through the house. No one, my friend included thought he would even try to leave and my husband being captain denial told me to relax.... needless to say, since my friend moved there i have only talked with her through text.

[numbbears]

Every time I hear about a kid with autism goes missing, I don't sleep because I'm continuously looking for updates and it almost always ends up with the kid being found in a body of water. That's a punch in the gut that the reason the bill didn't pass was because of ASAN.

I'm going to see if ABA wants to get some of the other parents involved with sharing a picture. I worry about DS wandering, but some of the kids there wouldn't even think twice about walking out an unlocked door.

I have a 365 day app that I use to take pics of DS. I never thought about doing it in the morning, but I might now.