There He Goes Again

Last December, we moved to town after several years in the countryside. Starting in the springtime, Olin would disappear from our yard, sometimes several times a day. He didn’t answer or return when we called, so I frequently found myself scouring the neighborhood, growing more and more concerned as time passed. Eventually, invariably, I’d find him at the edge of someone’s yard, bouncing and flapping his hands in excitement as he watched someone mow their lawn.
I found him this way a few times, and scolded him and sent him home (with apologies to the neighbor). After awhile, I started standing back to watch what happened. He would study the mowing process in total fascination, flapping and bouncing at the edge of the lot, sometimes crouching down to study the grass closely, and occasionally pointing out, “You missed a spot,” until the neighbor either finished their lawn, or got too uncomfortable with their audience, and put the mower away.
When the lawn mower shut off, Olin would listen to the wind, and then dart off in the direction of the next small engine sound. He crossed streets and yards with no care for traffic or property lines, until he had found the next neighbor operating a lawn mower. When I finally caught his attention and sent him home, he was always apologetic and promised to tell me before he went anywhere the next time.
Inevitably, the next time would come. Olin would shoot off like an arrow, even from inside the house, abandoning all other thoughts and activities. Soon enough, we discovered that if he wasn’t in the yard, we needed only to pause and listen for the distinctive growl of a small engine. Wherever the sound led us, there we found Olin, flapping his hands in delight.
 With very selective attention to his surroundings and no awareness at all of danger, he was absolutely at risk. It was unkind and unrealistic to keep him indoors all the time, and impossible to keep eyes on him continually. Tim and I worried about Olin following a series of lawn-mowers out of town, or across a busy road, or into dangerous hands before we could catch up to him. We worried about malicious townspeople reporting us for negligence or child endangerment, or some other parents’ bogeyman, but didn’t know quite what to do about any of it. We talked about putting a Public Service Announcement out on Facebook for local residents, but decided that it would invite more trouble than help. We talked about consulting DHS for ideas, but were worried that we’d be thrown into a maelstrom we couldn’t escape.
One afternoon last fall, when I hadn’t known he left, Olin came wandering home with several silvery “Junior Police Officer” stickers on his shirt. My heart jumped into my throat at the sight. What had happened to him, while my eyes were elsewhere? What trouble had he been up to, that someone called the police? I decided it was time for me to take Olin to the police station, and introduce him to the town cops. Hopefully, a neutral introduction and explanation of Olin’s unusual behavior would help them understand how to deal with him, if and when they encountered him again. I loaded the kids into the van that very afternoon, and went downtown.
 At the police station, I found one cop on duty (it’s a very small town), and asked him to come out to the van. He did so suspiciously, and I introduced him to my eldest son before launching into an awkward explanation: “This is Olin, he’s autistic and has special needs. He loves lawn mowers. He tends to wander, but he’s usually just following the lawn mowers. If you tell him to go home, he will…”
The cop got half a smile on his face, and said, “Oh, I’ve met Olin. He has watched me mow the lawn a few times.” This particular officer lived within a few blocks of our house, though he didn’t say exactly where. That was both reassuring and terrifying, because while he seemed to be familiar with Olin… he seemed to be familiar with Olin. In a society where every parenting action (or inaction) is judged and analyzed by outside parties, there is no concrete standard except the arbitrary opinions of strangers, and there is no defense for a parent who wants to make good decisions for their own child. It seems very much like no attention is good attention. I left the station feeling like I had done what I could, but it couldn’t be enough.
For the rest of the summer, we kept watch over Olin as closely as we could, and followed the sound of lawn mowers when we couldn’t. The descent of cold weather was somewhat of a blessing, because his wandering changed focus, and was much closer to home.
During the course of his medical treatment since the beginning of this phenomenon, we have discussed Olin’s wandering tendencies with his various medical providers. Most involved have been his geneticist and psychiatrist. I’m legitimately concerned that, as he grows older and more mobile, Olin might ride his bike to the next town, following the sounds of lawn mowers. Both these providers agree with us that this could be an issue for him going forward, but he is still at immediate risk. Tim and I joked about a tracking chip, or a Wanderguard. There are RFID tags for finding your keys, but they only work within 150 feet of wifi… You can microchip your pet, but it doesn’t help you actually locate him, it helps you identify him once he’s located… And that’s ludicrous for a child. We didn’t know what to do. We found only one option that made sense: a service called Angelsense that seemed to be built specifically for autistic wanderers.
It has lots of great features. Too many, really. Just knowing the real-time location of my wanderer would be priceless. Except, I couldn’t afford that when we found it. The startup cost was heavy, and the monthly service was more than my cell phone cost. (I would give that up in exchange, but I’m required to have a smartphone to monitor the Angelsense service updates.)
We put it on the shelf as an unrealistic idea, and as cold weather descended, it became less of a pressing issue.
Over the winter, we mulled over the options, and talked with various medical providers, insurance representatives, and case managers about the logistics. Spring would come, and the wandering would start again.
We applied to have Angelsense (or another monitoring device) covered through Olin’s Medicaid waiver, the Health and Disabilities Waiver (formerly known as the Ill and Handicapped Waiver), or any other option we could consider. It bore no fruit, and I stopped looking for a few wintry months.
Spring is here, now, and I happened to glance at Angelsense again. They are having a very, very good ‘sale’ for Autism Awareness Month(April). A sale that brings buying the initial device, first month’s service and activation within something I can scrape together for my family (thank God for tax returns). I want to buy the initial contract myself, while it’s on sale, and hope that funding will catch up for the ongoing monthly fees. But if it doesn’t, the great ‘sale’ will end up being a major drain on our already-stressed funds.
We can’t afford it outright. Health insurance won’t pay for it. We have a list of funding sources and charities to apply to, each of which will take awhile to reach a verdict. Until then, Olin is at risk every time he steps out the door, in a way that he can’t understand and we can’t realistically mitigate. And every time he darts off to chase a lawn mower and we fail to see him escape, we are somehow negligent as parents.
Dr. Jedele, Olin’s geneticist and a wonderful, intelligent, invested and well-read doctor who seems interested in his case, suggested we go through the Children’s Miracle Network for funding. I applied there, and The Children’s Miracle Network social worker gave me a page-long list of other places to apply, and said, “If none of those will accept you, we will consider it.” This list of options seriously included “Online crowd-sourced funding, using social media and networking”. I guess if you’re reading this, you count on that list, then, ’cause I am not going to set up a “GoFundMe”. Those sites steal at least 8% of any funds raised.
I’m not afraid of paperwork – I have become a paperwork ninja simply to keep my Olin alive, fed, and in school.  I’ll fill out a hundred forms and collect a million supporting documents if it will keep my family safe and happy. (I have enough of a reputation that friends and acquaintances will come to me for help filling out their miscellaneous registrations and forms.) Unfortunately, each one of those applications, no matter how well you complete it, has a waiting period to hear results.
Right now, I’m tottering on this brink… Do I take the sale price and buy the device/activation myself at this (really, very, very good) price, and hope that I can scrape up the monthly fees going forward?
Or, do I rely on the paperwork I’ve been shoving every which-way, and hope that even if they miss the sale price, they (whoever they are) will help me pay for a year of security for Olin? It’s a question of a few hundred dollars.
An entire year of service, activation, the device, an extra key, shipping… $478.96. But only this month. Wouldn’t it be nice if that were nothing?
If I were raising Olin 20 years ago, when I was a kid, I would take a tour around the neighborhood and visit with people, giving a light explanation of Olin, what to say to him, how to send him home, and my phone number. And I’d know that they’d send him home, or call me, or at the worst march him home with an accusation of wrongdoing. I wouldn’t have to worry about a tracking device… I would have had neighbors.
Today, I feel like every moment Olin is out of my sight is an invitation for some self-righteous busybody with a cell phone to snap a photo of my ‘abandoned’ child. Instead of adults banding together to make a community for their kids, it’s a competition to find the worst, and assume the worst.
What do you think? Do you love someone who wanders? Do you have an autistic, ADHD or cognitive-delay child? Or a memory-impaired adult? How does your family keep them safe? How do you afford their care? Do you trust your community to help? What do you think when you see a ‘weird’ kid lurking around?
UPDATE: You guys are amazing! Thank you so much for the incredible and very quick responses. The Angelsense for Olin has been completely funded, and I’ll be ordering it on Saturday. Thank you so very, very much! God provides in wonderful ways.
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