Category Archives: Billy

How do you feel about drugging your kid?

It's no secret that our son has sleep problems. I had (hah! okay, so HAVE) severe sleep issues, and he does too.

We followed all the rules. Feed him early, give him a pre-bed snack. Bathing (not generally a relaxing experience for anyone around here). Warm "milk" (for us, it'd be rice or almond milk, as he's got casein and soy allergies). Making the whole house quiet before bed. Reading stories. Withholding nap time. Waking him early. Tiring him out.

Generally, he'll go to bed around 1-2am without assistance. Unless we have a long, dark car ride (for me these days with severe complex sleep apnea, these are really dangerous to do, so that's not happening – my sleep doctor's directives currently state that I should not be driving late at night) he'll usually be up and active the whole time. I often joke that the US could be independent of fossil fuels if we find a way to tap into his energy.

So after discussions with his doctor, we use an as-needed dose of Melatonin at night (we call them 'Magic Gummies', as they are in gummy form, like his vitamins), for about a year and a half now. I also use it periodically – while I have little trouble falling asleep at the wheel, I have problems falling asleep at night – in part because I use so much caffeine to stay awake and effective during the day. Yeah, in my case it's a self destructive loop, and I'm seeking medical intervention for my complex sleep apnea (3rd sleep study tomorrow, maybe it'll be the one where we find the right machine and settings for me!). But when I was a child, I had more or less identical sleep issues, so it's not JUST the caffeine.

Anyway, so it works great, and his teacher, aide and therapists can tell when he's been using it, and when we've had to get him to sleep naturally. But that doesn't stop people from judging us for using it. People give us looks of disapproval, or ask stuff like 'do you really have to drug your kid?' or *insert anecdote about someone else here*, then some judgmental comment about drugging him. Not just acquaintances, and friends, but family. It sucks, and it's stupid, and hurtful.

We've always treated it as a privilege, not some sort of punitive consequence. In fact, if he's been 'bad', we make him do something good to redeem himself in order to get one – like pick up a toy, or get mommy a glass of water, etc. They don't have a negative stigma attached here. We've never overtly told him what they're for, but that they're a special treat for 'good boys' on 'special nights'. We've gone out of our way to avoid saying what they're for, lest he protest taking them because he wants to stay up and play.

Lately he's been kind of warily asking for them proactively. I told Becky I suspect he knows what they are for and recognizes his need for one. She was skeptical, but tonight I asked him offhand – 'do you know what the magic gummies are for?'.

He says 'they help go night night'.

Damn right they do, kid.

My kid knows he needs help to fall asleep, and actively seeks it. I couldn't think of a more powerfully obvious statement of self advocacy than that.

So how do I feel about drugging my kid? I feel great, because I know I'm helping him satisfy a basic human need that he is now directly articulating his need for. I feel like our choice to give him this powerful tool to help him sleep has helped him behaviorally, educationally, and has soothed him when he was tired, sore and weary. And that our feelings that he would approve of the use of them if he understood what they were for have been validated.

I'd be off to take a magic gummy myself, but due to my upcoming sleep study (I'll have a whole post on this mess soon, once it's completely dealt with, because boy, it's been a long, strange ride) I'm not supposed to be doing that, so I'll go lie down and hope sleep comes quickly. Goodnight, all!

Eyez-on GPS

A few months ago I activated a Compass 597 on Ting Wireless with the eventual intent of bashing together a small PIC based solution that used the USB features (though finding a similar chipset that I could miniaturize capable of running code generated by the Arduino software and libraries would have been my preference, I'm not aware of any AVRs that have proper USB support for the necessary USB profiles to get the device to work).

As summer approached, with projects ramping up at work, and Billy demanding more attention and interacting with me more when I'm home (not that I'm complaining, he's really fun to be around and I'm glad he's learning to communicate his desire for companionship and attention to me, even if the means used are sometimes inappropriate), the reality that this would be a project I wouldn't be getting to in a reasonable time period, began to set in. And around this time, I found the Eyez-on EZ120.

I've been researching products for some time, considering organizing to get my community in touch with Project Lifesaver and periodically checking to see if LoJack SafetyNet entered my area (they haven't) (amusingly, people have told me I should put LoJack on my kid, jokingly, and are often surprised to find that LoJack actually does in fact have a product that does exactly this).

More on wandering in my post about this last year here

Anyway, for our needs, Billy typically will not wander away from our property. He makes very few attempts to leave our house (usually the ones he tries for are when he sees the neighbor kid playing outside, or wants mulberries from the tree outside). We have multiple layers of security, extra locks, a baby gate, an alarm system, and a few other things to discourage his attempts. (Amusingly, he is so obsessed with having things be normal that if someone carelessly leaves the baby gate open, he will close it before he realizes "oh man, I could have gotten into the kitchen and raided the snack cupboard!"). Our problem is that if he will typically wander when we are already out somewhere to get away from stimulation or noise, or to go to somewhere that looks interesting to him (at Red Robin today, he ran off and went to the arcade area, and in the past he has run into crowds and run outside in a group of people at Eastern Market). The bear mentioned in the post above serves us well, but I worry that one day he may slip out while we're on a trip, or wander from school (which has happened once before!). For those situations the bear RF based beacon will not be practical, but a GPS beacon would.

2013-07-10 07.58.06

Enter the EZ120. It's a small unit, fits in your palm, mostly concealable in the closed fist of the average adult male. It looks fairly weatherproof (but not submersible). The unit is sealed, all switches are depressed and membrane based, and the USB/Charging jack has a rubber plug that goes over it when you're not charging. It's small and light, and uses GPS with a GSM radio chipset to transmit location every 5 minutes, and provides the parent with a mobile webpage they can hit with their cellphone or tablet (it works great on my Samsung Galaxy S4, and my iPad 2). The portal lets you alter some settings as well, such as a speed at which the GPS will instantly alert you (so you can for example be notified if your child enters a car), an option to disable the power button (without that, the only way to get this GPS to shut it off is to submerge it or smash it, there's not an obvious battery cover that I could find), and (most importantly) the reporting interval used so you can set it to report very fast if the child is lost, as you can cover a lot of ground in the default 5 minute interval.

We mounted Billy's GPS beacon on his shoe, as it is the one thing he is consistently wearing when we're out and about, and if we tried to use straps to mount it on his body, it would meet a swift and painful death at his earliest opportunity. The shoe for him tends to be unobtrusive, doesn't affect his ability to walk, and is a visible indicator to grownups that "hey, maybe there's something up with this kid and I should cut him some slack, or stop him if I find him alone". The bear has been an interesting conversation starter, I'm sure a box that periodically blinks is equally interesting).

Thus far, in my experience, the unit has had good coverage in the city and metro areas of Detroit (despite its SIM being from Canadian carrier Telus, the service is advertised to work for no extra charge anywhere in North America, roaming charges apply if used overseas). The predicted accuracy of the GPS (displayed on the portal) is typically 200 feet indoors, and 40 foot or less outdoors. So this isn't a device that is going to help your child if they are lost in a museum (but it will help you find what wing, and confirm they're in the building, which I suppose is a darn good start!) but if they wander outdoors, this will literally save a life.

My biggest worries when I bought it were battery life and coverage, as well as durability, size and overall reliability of the GPS signal.

Battery Life: I'm used to fantastically unrealistic claims about battery life, having used smartphones for 8 or 9 years. So when they said 48 hours, I had a flashback to my Nexus S 4G, and its fabled 7 day battery life (realistically, that ended up being 6-8 hours of battery life, even on a brand new battery. I doubt I could have gotten 7 days on that thing even with the phone in Airplane mode, but I digress). But I was pleasantly surprised to find the device stand up to its claims. While I haven't let it run down fully, I have graphed its discharge rate under typical use (for periods of up to 18 hours so far) and found that it would likely exceed 48 hours by a slight margin, though I expect the dropoff at the last 10 or so percent is pretty severe, like most Li-Ion batteries.

Coverage:  The unit, like I expected, is GSM based. (CDMA chipsets for independent developers are hard to come by, and carrier cooperation is even worse) I was concerned it may be on the T-Mobile network, as they historically have been wooing machine to machine developers the longest and hardest. They also don't have the best roaming agreements and tend to charge overage for roaming. Being that the SIM is from Telus, they are likely to have highly superior coverage, as every US carrier that has a GSM network MUST partner with Telus to cover large swaths of the Canadian market, and thus they are likely to reciprocate with every GSM carrier in the US who approaches them. I won't have to worry about the internecine warfare that carriers in the US seem to engage in. Technically, this bad boy is roaming 24/7 as I'm not even in the country where the originating carrier is. I have a feeling that this unit leverages that agreement in a certain way that is low cost or free (such as doing GPRS data, or SMS, or something else that is free/almost free in their contracts).

Durability: While the unit doesn't seem to meet Milspec 810E or IP-67, it seems relatively hardened. As mentioned before, there are membrane buttons or rubber plugs over openings, and the unit feels very solid, made of thick plastic and designed for the kind of abuse a child may throw at it. Billy has kicked tables with it multiple times without any visible impact or damage to the unit.

Size: It's actually smaller than the RF based bear locator. But only by a little bit. The case provided is suitable for our needs now, but there are no direct attachment points on the unit itself. It's designed for wearing on a belt, I used a ziptie to hold it to his fake shoelaces (they're velcro shoes), you could lace it into proper tie shoes without issue. If you want to body mount it, you'll have to find a nylon strap or something yourself, and if your child doesn't want it on, there's nothing in the packaged case to meaningfully impede them from removing it. Fashioning your own attachment method outside of that should be relatively easy given size and weight, a craft oriented person could find a number of ways (including sewing a special pocket into existing clothing) to put it on their child.

Reliability: The unit has never powered off since it arrived. I charge it nightly, and check it periodically on my phone to ensure it is always working correctly. My son has kicked things wearing it, jumps a lot (it's one of his stims) and crawls sometimes, banging his shoe mounted units on the floor. I haven't seen it fail to report in, the provided website seems to maintain good uptime, and I haven't seen periods where the device was in good signal but the website didn't show an update, or showed a delay.

One thing does annoy me – there is a panic button on the device, which my son will occasionally hit as it is visually interesting to him. This triggers a parental alert to our cell phones, and sends us a link with his coordinates. It has no reinforcing feedback on the unit, thankfully, so it doesn't reinforce that behavior by making a cool sound, or anything, and we ignore it when it happens so he doesn't realize it is annoying us and keep doing it. I wish I could disable that feature but it's not a big deal for us.

But i'm glad we bought the GPS, and the $20 a month seems quite fair for what we're provided.

Related news – we got talking to our local police when they responded to a call at our neighbor's house regarding an SUV that swerved off the busy road behind our house, and basically destroyed her garage and car (thankfully missing ours by roughly 15-20 feet, good for both us and the driver as our garage is made of brick, and the neighbor's is wood). Becky asked them what would be a good time to stop by and introduce Billy to law enforcement officers and vice versa, and they got talking and it turns out the officer's kid is also a wanderer, and knew exactly what we were talking about. They apparently will keep records and photograph Billy, and update our file in the 911 dispatch system to inform officers that there is a special needs child in the home. I'm very pleased with that, so Becky will be stopping by in the next week or so to take care of that.

Welcome to the wonderful world of specialists!

So we got a call from Henry Ford's Center for Autism and Developmental Disabilities. They got the paperwork! (Well, that was actually a separate call earlier this week, letting me know they got it and didn't forget about us…) And they were happy to let me know that they were wanting to set Billy up for the next available appointment date.

I of course asked when that was.

"October 16th! We have an opening at 9am and noon!"

"… what? That's your earliest date?"

"Yes. We can add him to the cancellation list too, something might come up earlier, it happens from time to time"

"ok. Well, he'll be in school for a few months by then, so let's schedule it after class so it's less disruptive to his schedule. noon sounds great."

sigh.

Could be worse, a parent on MyAutismTeam commented on my post there saying U of M is scheduling appointments 2 YEARS OUT. TWO WHOLE YEARS. Good lord.

Anyway, we also ordered this today. Celluar based GPS tracker should be good for when we're camping this summer. Last summer we had a minor incident where he wandered 3 rows of tents down to play with someone else's dog. Back then he was essentially nonverbal so it was extra scary. Now, he'll have GPS tracking, be trained how to swim (which he gets better at every day, 18 weeks of formal 1:1 training and swimming 3 times a week will do that, I guess!), and be equipped with a PECS to help him communicate where words fail him.

We still plan on using the teddy bear beacon/tracker for times when we expect him to try to wander off (like at Eastern Market, or at the fireworks, both of which he loves, but also loves to try to seek his own path, which obviously is unacceptable!), but the GPS will give us peace of mind if he disappears at times we don't expect him to. The GPS duty cycle and battery is supposedly good for 3 days. If we're good about keeping it plugged in at night, this should be perfect for essentially 24/7 monitoring. Not sure where we'll attach it yet, I may have to make it a waterproof shoe case. I wish I could just strap it to his ankle like a criminal's tether, but i can see him trying to focus every bit of energy on getting that off him posthaste, damaging it if necessary. (if he's one thing, it's clever and determined!).

Progress updates – swimming/iep/fbi

Swimming:

Today, I saw Billy swim roughly 10 feet while treading water and keeping his head dry. I'm super excited about that.

Last week he was playing around near the edge of the pool at the YMCA and fell in. He swam back to safety and pulled himself out of the water. I'm also super excited about that.

IEP:

Survived it. It wasn't earth shattering. I made a reasonable size deal of pushing for a outreach to the local first responders to have a meet and greet where the students can practice their social scripts, and the law enforcement/EMS/Fire can learn how to deal with various special needs first hand. They were all very interested in this idea. Let's see if that dog hunts.

Got the autism paperwork submitted to Henry Ford, let's see what happens there.

FBI:

Got a batch of intact computers back from the FBI. Excitedly awaiting the rest.

Advocacy:

Just wanted to call attention to this page as well: stophurtingkids.com

My school used physical restraint in situations where there was no risk of harm, and often secluded me well into middle elementary. I spent entire afternoons in hallways or locked/unlocked rooms off the library in school, without adult supervision, because the adults lacked proper training on how to deal with children who had disabilities that caused them to be disruptive, or to 'not fit in in the classroom environment'. As my mom said "if we hadn't fought for your rights and for inclusion, you'd have spent most of your educational career hiding curled up under the principal's desk, locked in a hallway somewhere, or god knows what".

It's always in the back of my mind when dealing with schools. I mean, having giant custodians manhandle you and do prone takedowns to keep you in your hallway seat has an effect on a 1st-2nd grader. I have recollections of them experimenting with mechanical restraints too, but I'm pretty sure that didn't last long.

Anyway, these practices need to end in the United States. Children are being seriously injured or killed from improper restraints, or improper supervision. And it has no educational or therapeutic benefit.

Swimming update

We're now in week.. 8? or 9? of swimming instruction. Things are going pretty well. The instruction is officially 6 weeks long, but I don't think anyone truly expected  to go from zero to swimming like a fish in 6 weeks, at least, not from Billy. I'm just glad he's mostly okay with getting his face wet at this point.

Since we started, our weeks go like this:

Tuesday – The three of us go to Family Swim

Wednesday – Billy goes for his 1:1 swimming instruction

Thursday – The three of us go to Family Swim

So for 3 days a week, he spends at least an hour a day in the pool. It's doing wonders for his comfort level in the pool, and it's not hurting us exercise wise as grownups either.

Currently, he's able to:

  • Jump in the water from the side of the pool in a seated position with a swimming noodle, or these things they call swimming bubble belts. I've never been there during instruction, and I'm myopic enough where I can't see other swimmers in the pool, so rather than show a real picture, I'll just drop this google image search here.
  • Swim unaided for several feet, between two people or a noodle and the wall, for instance. He's got huge confidence issues with this, and it's being worked on.
  • Swim using arms and feet with a noodle or bubble
  • Place his mouth underwater and make bubbles
  • Use his noodle as a squirt gun by flooding it with water, then blowing on one end to make the water blow out the other.

And as parents, we've learned to:

  • Repeatedly tell him to swim with his mouth shut, as he tends to have this goofy permagrin that lets water in
  • Make sure when he tries to interact with others socially, that he's not actually being adorable and getting close so he can spit water at them and laugh his butt off
  • That if he does do this, and accidentally swallows the water and starts coughing, to immediately rush him to the side of the pool, and bodily throw him as far as we can away from the pool without injury, and tell him to run away from the pool. This way, when he inevitably gags (yes, we've tried stopping this, with really bad results, coughing causes this on land too), he throws up on the edge of the pool, rather than inside of it. The staff isn't thrilled about this, which occurs roughly once a week, but is happy we've been able to detect it happening and react, unlike the first week where they had to close down the pool because a few hot dogs were basically floating in it.

Using my new "Force" like superpowers of anticipating vomit is a personal accomplishment of mine as of late. The lifeguards are starting to take note when they see me running in the pool with him in my arms, and "tossing" him onto dry land. I hear the mumbles, and I can tell despite the fact I can't see them that they are making disgusted looks, but usually one of the more experienced lifeguards (or Billy's instructor, who is aware of his special needs, is also a lifeguard there) will whisper to them or shoot a look, and collectively they don't make us feel as awkward as we could. That's as close to acceptance as I could ask for for the time being, so I'll take it. (The first couple of weeks, they told us that he can't come back in because he's 'sick', but I had a chat with one of them about his gagging issues, which he has on dry land quite a bit anyway, and now I get less static when I shower him off and bring him back in)

So all in all, we have progress, and I'm happy. We're not where we want to be with water safety yet, but we're a lot closer than we were, and by this rate we'll be where we need to be by summer vacation, which is comforting.

Learning to swim

The last few months Billy has been really obsessed with swimming. Any time he sees water, some hotels, swimsuits, or anything related to swimming, he begs to go swimming.

Most people would be like "oh, that's awesome, kids love swimming! It's good exercise!" But most kids don't wander off under your nose to do whatever they want, consequences be damned either.

Accidental drowning accounted for 91% of all autism wandering related deaths the last few years. And Billy has to be physically restrained every second he's by a pool lately, because he thinks he can swim (he has had a few successful swimming events with a swim vest on) or because he wants to lay down on the edge (or crouch, yikes!) and splash his hands in the water.

With the warrmer weather coming, and his increased tendency to elope and his strong desire to be independent (he headbutted me in the face to try to walk unaided in a best buy parking lot a few weeks ago, and has been constantly trying to dart out into the parking lot before we can take his hand lately, screaming NO HAND NO HAND NO HAND! and crying his eyes out and refusing to walk if we take his hand (no way do I give into this nonsense, if he refuses to walk he gets dragged)). Not going to lie here, I was starting to get downright paranoid about the issue of him drowning.

I've taken a two prong approach to addressing wandering and drowning.

  1. Secure the perimeter: our house already has a security system we use in annunciator mode at all times, and leave set to "stay instant" all night. But we are not at our house much in the summer. I can't fortify my parent's house, a DNR cabin, a hotel room, or a tent. But I can buy one of these (which I will review when I get it) that allows me to prevent doors from being opened. That should take care of everything but the tent, and I have some ideas on that front.
  2. Address the risk: I do not have a pool, nor a friend with one. How should I teach my child to swim (especially when he doesn't listen to me half the time anyway?) Fortunately, the YMCA has the answer to that! The YMCA in Birmingham (the detroit suburb where I work, about 20 minutes from my house) has no less than 4 special needs swim instructors who are able to perform a 6 week, 1:1 swimming lesson to Billy that should address this. I also took the opportunity to sign the family up for access to the YMCA so we can help give him outlet for his swimming needs, and also accommodate Becky's longstanding request to join a gym with childcare. (Talk about a solid win!)

Anyway the swim instruction starts Wednesday so I'll update everyone as to his progress.

Interesting story during our tour, the lady signing us up was making small chat about things, and was aware of our special needs swimming class needs and the impetus, and asked if we had any questions at the end of our tour. I asked if there was any policy on whether we can practice swimming with Billy fully clothed in street clothes, including shoes. She was caught off guard by this, then suddenly you could see it click in her head why we would want to do this, and she got this look that seemed like a cross between understanding, sympathy, and horror. Apparently that can be worked out with the instructor, which is good. :)

If you would like to learn more about autism and wandering, please visit the National Autism Association's excellent site on wandering here

And on a lighter note, here he is crashed out on the couch:

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One of those nights (grossout warning)

So I had some issues that kept me later at work than I would have liked. I get home, and we have dinner. Billy hasn't been feeling well today, mostly coughing fits. No school for him tomorrow. Mommy needed to run an errand, but left her car lights on so her battery was dead. Went out to give her a jump, and she was on her way. I came back in, and Billy wanted a bit more food. He saw the guacamole from the chips and guac he slept through before dinner, so I made him a little plate, and retired to the restroom to attend to some personal needs.

I'm just about done in the restroom, and I hear coughing, some gagging, and a plate hit the floor. I jump up to see what's going on, to find that there's no toilet paper. I disregard that, and I see an upset billy sitting there in a chair, covered in his own vomit. He coughed, gagged, and puked in his plate. Upon seeing his own vomit, he freaked out, tossed his plate off his tray. He looked over the edge, saw his own vomit covered plate, and puked again over the edge of his chair all over the chair, the plate, and the floor. And then he laid back in his chair and closed his eyes to get some rest. (hey, puking a few times is hard work!)

So after procuring myself some toilet paper, I had to clean off a groggy, not feeling well boy, and his chair, the floor, and the table.

I could kiss the creator of Clorox wipes on the mouth. Even if they were a big ugly dude. Encouraging the people who make things like this is THAT important.

Autism screening paperwork

Now we've got the 16 page medical history form, and the 40 question social communication questionnaire out of the way, we only have the 12 page questionnaire, and the 100+ question child behavior checklist (actually visible at http://www.aseba.org/forms/preschoolcbcl.pdf ) to fill out before we can schedule the autism screening at Henry Ford's Autism center.

I don't know who they're testing at this point – him or us. I swear some of them are just to make us feel forgetful or senile. "At what age did your child first walk?". The questions are always thought provoking and remind us the ways he's different from other kids, as many of them besides the speech delay are subtle. But they're interesting nonetheless.

"If you come into a room and start talking to him without calling his name, does he usually look up and pay attention to you?" "no"

"Does he ever use odd phrases or say the same thing over and over in almost exactly the same way (either phrases that he hears other people use, or ones that he makes up)?" "yes"

"Does he ever have complicated movements of his whole body, such as spinning or repeatedly bouncing up and down" "yes" (they don't have a "basically constantly" option)