Some basic money-saving tips

Number one: don't forget that any income-tested program or service is based on your kids' income (once they are 21), not yours. That may sound obvious, but I swear that every time we fill out paperwork that asks for things like spouse and children's names, we start to fill it in as we were applying for ourselves, not our kid. And even though my husband has tons of experience with ODSP through his work, even he started to complete that paperwork as if applying for himself!

Here are some discounts you should certainly explore:

• If you access any Parks & Recreation programs, apply for the Welcome Policy. It covers up to $250 of programming per year. Just be sure to keep track of when your policy expires: they don't necessarily remind you.
• If your kid likes the movies, get the Access2Entertainment card. It gets a companion in free to a great many venues, including movies. 
• If you use the TTC, get the TTC Support Person Card for your kid: it lets a companion travel free. And the Fair Pass Presto card on their behalf: their fare will be less.

Several mobile service providers offer discounts for people with disabilities and/or low income, but typically you need to ask. Some specific examples:

* Fido offers a $10/month accessibility plan discount: https://www.fido.ca/accessibility/plans

* Bill offers a Connect Everything or Unlimited Smartphone rate plan for $20/month accessibility discount available. Details here

Lots of venues don't publicize their policy, but it's in place. For example, you and your kid can get into the CNE for $10 just by asking at the gate (they pay $10, you get in free). Similar discounts are available for the Royal Winter Fair. Unless you feel it's stigmatizing or embarrassing, just ask. Not only does this save you money, but it takes off some of the pressure you might feel if your kid can't cope with an activity or event you just shelled out $40 for. If it's a local venue, the savings make it feasible to make numerous short visits to shape up for longer stays. And you can see it as compensation for attending someone you really would prefer to avoid, but your kid insists on attending, like some dreadful sequel to a terrible movie.

No-one has ever asked me for paperwork to prove disability, but carrying a copy of a recent ODSP statement should suffice if you are questioned.

Toronto Transportation Options

We have accessed two basic types of transportation to get our son to and from programs and activities (well, four types, if you count us driving him or his sister accompanying him on transit in the mix). Toronto Ride coordinates driving services that are offered by a variety of Toronto-based service providers. It is intended for people who are unable to access WheelTrans for whatever reason (more on WheelTrans below). There are often distance limitations and charges are by distance (for example, we were paying $15 for a one way trip of about 12 kilometers). For all the details, visit   http://www.torontoride.ca/

For the past six months or more, we've been using WheelTrans for transportation: although there is more variability in vehicle and drivers, the trip costs a single TTC fare (and since our son has the low income Presto card, that means a trip costs $2.05). There are some important things to keep in mind about this service:

• as in any other area of life, some of the drivers are friendly, good-natured and kind and others, well, not so much
• the vehicles used vary, sometimes a taxi and sometimes an adapted cab (depending on who else is travelling)
• often, although not always, there are other people using the same service, which means both that your kid needs to be comfortable sharing a vehicle with strangers (although regularly scheduled trips seem to often have the same people travelling together) and that the trip will almost always take longer than it would take to travel directly from home to destination (or vice versa)
• the online booking service is, shall we say, not entirely user-friendly (I remember trying and failing to cancel or add a trip, can't remember which, and when I ended up calling customer service was told to scroll down to the very bottom of the screen where the option I needed was tucked out of sight, a solution he had assured me stumped many users, himself included) and the automated calls the night before confirming the times for the next day's trips use a singularly irritating voice

If there are time limitations (for example, for one of my son's programs the doors do not open until 9 am and the group leaves the facility at 9:30) scheduling can be a little stressful. A kindly customer service person offered me this guidance when I was first wrestling with this: if the scheduled pickup time you are given would either get your kid to program too early (based on driving straight there) you would be wise to cancel it. So, for example, if it's a 30 minute drive from your place to the location, and he can't be there earlier than 9, and the trip is scheduled to pick up at 8:00, that's a worry. Straightforward enough, assuming of course that you have some backup system for transportation, but there's no way to know whether someone else will also be being transported in the same trip, and whether that extra leg of the journal would ensure arrival will be after 9. As a consequence, right now it's not possible to simply leave my son at home and assume he'll negotiate any time issues when the driver pulls up. The last time the driver arrived early I told him about the 9:00 timeframe and he assured me that if it looked like they were going to be too early he would drive "very, very slowly", which was kind of sweet. Note that if you have to cancel, don't do it online, but call the priority line, which is 416-393-4111

Bottom line? If you're already having to ensure your kid makes it safely to the vehicle in which they'll travel to/from a program or activity (whether or not you are driving that vehicle) then WheelTrans won't necessarily make it possible for you to waltz out of the house free and clear, but it will certain save you money and give you another avenue for building independence skills.

One caveat: in our experience, sometimes WheelTrans does not show up. So far this has happened only on Friday afternoons, but as a precaution I set downloaded and set up the Beck Taxi app which will make it easier for me to order and pay for a cab if this occurs.

You need to apply for WheelTrans and one of the parts of the application needs to be completed by a doctor.

An automated voice message will be sent about 12 hours before the next day's trips, to whatever phone number is associated with the Wheel Trans account, saying the exact time of the pickup/delivery (before this time is reached, the time is a range. You can also use the self-booking online tool (https://mywheel-trans.ttc.ca/SelfBooking2018/login) to check the time, and to cancel trips if necessary, as well as to book additional ones.  Please note that if you book a one-time trip, you may see a message saying the trip could not be booked: this is a design flaw in the software, apparently (as the helpful man at Wheel Trans told me after I waited on hold for about an hour) and if you scroll down you will see an option to ask to be put on the waitlist for that trip. I have to note that everyone I have dealt with at the WheelTrans office has been kind and helpful.

In praise of uneven paths

Our son is often a chatter box, a never-ending stream of language made up of well-worn bits from favourite TV shows or DVDs, requests for information you just gave him, general complaints about what is currently happening, expressions of desire (or dislike) for whatever comes next. It's not a quiet household when he's around and although I recognize that some portion of this chatter  (maybe all of it) is anxiety-related, it's not always easy to live with.

We've always been a family of walkers, and are lucky enough to live within walking distance of the lake, grocery stores and fruit markets, even (back in the day) a Zellers that is now a much-less-interesting (to him, anyway) hardware store. We often walk in the city, typically getting off the subway one or two stops away from where we need to go so we can just explore the neighbourhoods we encounter.

A number of years back we discovered, pretty much by accident, the joys and benefits of walking on more challenging surfaces. I'm not talking about proper hiking, with special equipment and backpacks and camping out and such (and let's not talk about that near-vertical stretch of the Bruce Trail my husband steered us on last year on a visit to North Bay). Our quest is for paths that are not only not paved, but not even groomed, that are pitted with rocks and roots and are uneven underfoot, preferably with intermittent light and shade that reveal and obscure the landscape and footing. And although the health benefits are undeniable, here's the benefit we truly treasure: in those conditions Devon is utterly silent for extended periods of time. When you live with a chatterbox, you treasure any silence you can enjoy while sharing his presence. I think of those walks as enforced mindfullness: he is simply forced to focus on every step and, presumably, think of nothing else. He has to be mindful just to stay safe and comfortable: there's nothing abstract or theoretical about it. He never articulates how these walks make him feel, but he also doesn't complain when we embark on one. It's like walking meditation, but again, and I can't stress this enough, the meditation comes from the ruggedness of the terrain.

We've begun collecting a list of some of our favourite rough paths, like the conservation area north of Ball's Falls in Hamilton where you are often walking on a bed of rocks, the north end of the Rouge River park in Toronto where you get lots of different conditions, and Starkey Hill, a conservation area that is pretty much up one hill and down another, right next to a farmers field outside Guelph. To say nothing of the Oakridges Moraine, yet another place where you can be in close proximity to a city but seem to be in the wilderness.

These walks are that rarest of things: a win-win-win situation. We get some much-needed exercise plus a bit of a break from our son's often relentless chatter, and he gets both exercise and what I like to think is also some respite from whatever activities are happening in his brain that leads him to so often verbally seek validation, clarification and, heaven help us, repetition. In fact, if the day is coming to a close and we haven't gone for a walk, he'll remind us to do one, even if it's just one of our standard in-town routes (code-named "school", which is a neighbourhood walk that takes us past, yes, a school; "baby park", so named not because there are babies in the park but because the walk takes us through a small park that is stocked with toys and activities even when there are no children there, "ravine", which takes us through the Glen Stewart ravine which, depending on whether you go from south to north or vice versa, can be quite a little workout, or "Fallingbrook", which takes us through the streets of that fancy neighbourhood to the south of us.

I use a free app "AllTrails" that uses my mobile phone connection to identify nearby treails, which is helpful when travelling. Also check out Ontario Trails.

An alternative to tracking software

Thanks, I suspect, in part to the demands of the aging population, I've discovered an abundance of devices for tracking and locating vulnerable people, from items that clip on to clothing to something that you can put in the bottom of a shoe! Most work on cellular networks, and I'm sure more come out all the time. We have addressed the need to track our son's movements through using his cell phone because, like NT people of his generation, that darned thing is pretty much always with him.

Following the truly memorable experience of having him lost for a day (!) on the subway (he didn't leave the subway car all day, as far as we can tell, until it went out of service and he was forced off), we got him an Android phone. We also signed up for cell service from Freedom Mobile, which is the only provider that offers service on the TTC: although on-train service can be spotty outside the downtown core, if you get off a train and go to the Designated Waiting Area, our experiments have shown you can almost always get service. (Those locations are also adjacent to where the cab containing the subway driver is, so offer an opportunity to ask for help.)

We also use Prey (https://preyproject.com/), a free app with website that tracks the location of devices: and, as noted above, we're pretty sure that where his device is, that's where you'll find our guy. It can also send an alarm to the phone: presumably that's intended to help you locate a lost phone, but it's also useful for notifying the phone owner. Devon often travels with WheelTrans and although he often calls when he's in the cab, it's still useful for me to check up on where he is, how close he is to home, etc. I confess I sometimes also use it to see how much time I have left to write this blog before he arrives home from whatever outing he might be on!

We're also looking at putting an "I need help" audio clip on his phone that he could play in emergencies: we're worried about him being seen as a weird guy rather than someone who actually needs help, and he's very reluctant to ask for help under pretty much any situation. (Yes, we're working on that too, but it's tricky. I sometimes joke that we need a "friendly stranger" program where people we know and trust but that our kids don't know shadow them through potentially hazardous situations.)

Update: cleaning up some old email and found this article about using Google Maps, which could easily be adapted for tracking purposes:

Our latest approach to building independence and reducing nagging

In a busy four person household, it's easy for Devon to disappear to his bedroom or the basement for a little (OK, a lot) of time spent doing what he likes to do best, including watching his extensive DVD collection, often simultaneously listening to music or watching TV online or whatever. Nagging is unpleasant for all involved, but nobody in this family comes home from work and then just switches to family mode, both parents often have "work-work" to do in addition to all the regular household chores and responsibilities. Devon has a few scheduled activities and responsibilities in the evenings and on weekends, but we were still spending a fair bit of time nagging, and my husband and I often found ourselves stepping on each others toes and/or giving contradictory instructions.

After a bit of trial and error, we came up with the system I'm describing here. We've tweaked it numerous times, but I think we're close to getting it right (or right for us, anyway).

Here's a picture of the system, which is mounted on the door that leads from the kitchen to the basement (or as I sometimes call it, Devon's lair - and yes, he has a perfectly fine, even spacious, bedroom of his own which is apparently reserved just for sleeping).

The blue cards represent "Devon time", each card worth 30 minutes. There's a fixed amount of this time allocated per day. The white cards represent tasks that need to be done. At the top there are two other types of cards: one states the targeted skill (e.g. putting on sunscreen by himself) and the other is intended to represent which parent is sort of in charge for that day (this has not worked so well, but I'm hoping that's a temporary consequence of my husband's new job). 

Some cards have a single action item: "take vitamin", "drink water", "gather books to return to library" or several related action items (all the different tasks involved in getting ready for the day).. Some are daily, a few are day-specific. 

Originally all of the cards were very specific, but I realized that wasn't going to help achieve my goal. I didn't want to, for example, have to determine whether there was laundry to be washed, or whether the dishwasher needed to be emptied, and then put up the appropriate card. Instead, I wanted Devon to make that determination, so now we have cards that more generally list the tasks that are related to an area. The idea is to encourage him to first consider whether the task is needed at all by taking the time to check, rather than having him dash through the chore in order to get back to a desired activity, an urge which has led him to hang dirty laundry on the line or add dirty dishes to a dishwasher full of clean dishes. So the "kitchen" card includes "load or empty dishwasher" and "soak, wash or put away plastic dishes" (which we hand wash): he needs to identify which, if any, activity is needed and then do it. When the task is done, he moves it to the "done" column.

The cards are also helpful in reducing nagging. Devon may claim to have done all his morning bathroom routines, but if I hand him the card or direct him to it so he has to read through the list of those routines, he'll often recognize that there's one that he has missed. This removes the need for us to remind him. They also avoid the issue of having one parent direct him to an activity that has already been done with the other parent.

He's very print oriented so the text-only cards work: others might respond better to pictures (when I need visuals, I like to use the free Picto Selector (https://www.pictoselector.eu/) which offers a lot of low-detail images. 

For the 30 minute break cards, he can use more than one at a time if he wishes. He has a simple kitchen timer in the basement and another in his bedroom that he is supposed to set (they're loud enough we can usually hear them too). When the break cards are used up, that's it: we still get argument, but the cards give us a more neutral way to engage about the matter. (I'm a bit fan of pointing rather than arguing.)

Originally I created a single set of cards and each morning we had to skim through them and select the ones applicable to that day. That turned out to be a considerable pain, so instead I made a full set for each day, with a few seasonal cards as well. Sometimes we'll make a determination not to use a card (for example, there's a "Family walk" card that we might not put up if the weather is terrible, and a "play game" card that we might not use if the day is particularly busy with scheduled events). If it's a holiday or someone is sick, we may leave the chart blank. I'm sure the cards could be prettier, but they do the trick. 

Because my handwriting is appalling, and because we were doing lots of duplicate cards, I used Avery white index cards, which come in sheets of three so you can run them through a printer. (Product code 5388 if you're interested.) You can add the content for the sheets online through the Avery website and save them to a PDF for printing. The online Avery tool sucks: you have to be very careful to select the option to edit each card individually otherwise you risk over-writing all your work. I would have preferred to set up a template in Word or another authoring tool, but since we're using the cards in portrait mode rather than the conventional way I just couldn't get the results I wanted without way too much work. If you were printing landscape you could probably find or create a Word template easily.  

The card holder is one we got from a school supply store: the vertical divider is just a piece of tape we ran down the middle to create a demarcation between "to do" and "done": we couldn't' find anything exactly as we wanted online or in stores. 

We have found this system helps the whole family: would love to hear any other suggestions or if anyone else gives it a try!

Providing and constraining choices: a food court success story

When my kid began attending a program that included a weekly visit to a mall food court, I was a little bit concerned. Although my kid has a somewhat balanced diet, he does love his junk food. The prospect of him capitalizing on the chance to consume his ultimate favourite (KFC) weekly was enough to make me think we'd need to find another program for that particular day, which would not be a trivial exercise. Somehow I hit on the idea of revisiting the old "token economy" systems we used in his youth. I made a list of all the food court outlets that he could conceivably find something he would be willing to eat (this took a little research). I then set out those choices on a grid, with a column per week, and set a general rule of requiring a four week gap between visits to one particular establishment. It looked like this:

I found that as long as he knew it was possible to have his most desired thing, and that there was a specific date he could access that thing, he was willing to make other choices. Each week he'd chose from the list and I'd confirm that he wasn't "double dipping", as it were. Most astoundingly, he began to add possible eating locations to the chart, perhaps because of the choices he observed others making. Has he slipped up? Of course, but only in the early days. I can't describe how happy it makes me to have him report on eating something I honestly never knew he would. It appears that the almost obsessive desire for something can, in him at least, be satisfied by the assurance that it will be possible to have that thing, on a specific date. He may also be making broader choices due to peer pressure (particularly the example set by the group leader, who he very much likes and admires). On a side note, and presumably entirely due to peer pressure, he takes a picture with his phone of all restaurant meals these days. I find it simultaneously hilarious and charming when we eat out together to see him carefully position his food so he can photograph is just so, as if it was a unique dining experience to be recorded for posterity rather than, you know, a chain restaurant's 100% predictable output.. 

Sailing through Daylight Savings Time: a lesson in natural consequences and respecting choices

I can't remember when we first got a watch for our son, but he seems to have been wearing one forever. We chose a relatively simple digital design (a challenge to find, which is why we bought a couple) with an expanding wrist band because his coordination wasn't up to the challenges of a conventional strap. In those days he was highly resistant to anything new, but for some reason, he took to that watch instantly, wearing it to bed, in the pool, in the bath, everywhere. The precision and lack of ambivalence of the digital read-out is, I suspect, highly appealing, and undiminished by the fact that these days it's hard to find something that doesn't tell you the time. (The time shown on his watch apparently over-rides that of his numerous electronic devices.) However, his awareness is of the time, not so much time itself. This leads to exchanges like:
Me - "Time to head upstairs for bed (for a 10:00 transition to bedtime)"
Him - "It's only 9:59!"
Me - <sigh> 

I have yet to make him understand that a minute or two spent arguing is actually less pleasant than simply complying.

One of the routine problems we encounter with his devotion to his watch, of course, is the twice a year Great Daylight Savings Time Crisis. First, we tried sneaky - my husband would creep into Devon's room late at night, remove the watch, change the time, and slip it back on his wrist, but that only worked a few times - very soon, no ninja could have overcome our kid's sensitivity to any such attempts, no matter what the hour. A couple of times we waited until he was in his swimming lesson (from which the watch was banned), and change it then. Then we tried demands - he couldn't do whatever was the desired activity of the moment until he handed over his watch for correction. And he would watch over the procedure as if observing open heart surgery being performed on his newborn (which is why my husband always had this specific task, since I am apparently incapable of mastering the obscure combination of buttons required, even without my kid's fierce scrutiny).

Then he grew up, and we grew up too, and I decreed that he could voluntarily hand over the watch for the time change, learn to do it himself, or live with being out of sync with the rest of the world ( until he was willing to relinquish the precious time piece for the length of time it took to adjust the time. Each time this strategy was used, it took less and less time before he choose to have his watch changed, as his awareness of being out of step increases (aided by the fact that he surrounds himself with electronics which magically adjust their own time).

A while back the time change occurred when my husband was out of town. He cleverly attributed the non-requirement to have his watch changed to the absence of my husband (I overheard him saying "when dad is back he will fix it"). He eagerly greeted my husband's return,  handed over the watch, and went his merry way without another comment. Now this is routine: he asks for the watch to be changed and it's a complete non-event.

The lessons I learned in this multi-year experiment were to never forget to make the best use of natural consequences, to just respect your kid's choices, let them have more ownership over their life choices, recognize what truly is the small stuff and really none of your business, and never back him into a corner just to meet some standard of conventionality that matters not a jot in the general scheme of things.