Saturday, 14 December 2019

Lessons Learned from Changes to Passport Funding

Just in case anyone else has encountered the same issues I did, some
information that might be useful about Passport funding. 


  • Family Services Toronto apparently no longer sends out annual confirmations of funding levels (unless those have changed). if you're not sure, you have to call them to confirm the amount. No annual paperwork is being processed, it seems.
  • If you use My Direct Plan, you have to manually add your annual funding into your account at the start of the fiscal year (March 1): it is not automatically updated. Log on to My Direct Plan, go to Account Settings, scroll down to Fund Settings, and enter the annual amount (the rate for KM is 0.01). Note that no matter how tempting it is to enter the amount you actually need, the amount entered here won't actually be granted to you: once you've exhausted the funds allocated, you won't be able to submit additional expenses, no matter what MDP says is your account balance. If you have a submission for the new fiscal year, I'd suggest just going ahead and putting in an amount (say $1000) so you can submit receipts while you're waiting.
  • Funding contracts do not appear to be automatically sent out. If you haven't received/signed it, you should probably ask FST to send it to you. Note that they apparently don't keep track of who has or has not signed that contract:despite how much they emphasized that in the funding changes a few years ago, but you should probably still ask for it in case someone actually, you know, checks.
  • If you are using funds to pay a worker, the worker has to sign up for an account and you can't actually submit a specific claim for expenses related to that worker until they acknowledge that it's valid, by responding to an email they get sent from MyDirectPlan. 
  • The MyDirectPlan support people are great, but they don't know anything about your funding.
  • I'm having intermittent issues with messages saying that my submission did not pass verification (it seems to keep forgetting who I am) but when I check again later it seems to be OK.



If you would like to complain about any of this nonsense, I have the contact information for someone who is the interim director of FST and who was responsive the last time I complained.

Saturday, 30 November 2019

Resources and programs for adults with developmental disabilities in the GTA

This is just a loose collection of resources others have shared with me or I have stumbled across over the years. Unless otherwise indicated, I in no way endorse or validate these resources.

The social enterprise Help Seeker purports to offer a way to identify service providers (community, health and social services) that are in your geographical area. 

DANI maintains a page of community resources that includes events and activities.

The Prosserman JCC (in North York) offers a variety of recreational and social programs.

Viability "is a neurodiverse team working to co-create brighter futures with neurodivergent people and allies, build community, and transform workplaces, schools, and our broader society in ways that support everyone."

Advocacy

ARCH Disability Law Centre is a great source of information about legal issues and those with disabilities of all types. They have a new Respecting Rights newsletter run by self-advocates that you can subscribe to.

Autism Ontario's "Forgotten" report, although dated, has some useful information.

Cognitive Behavioural Therapy

This therapy is sometimes recommended for caregivers. Learn more at this blog: Cognitive Behavioural Therapy. Or watch this video

Communication Supports

If your loved one uses visuals to communicate, and you prefer to work with print-based materials (I'm sure there are endless electronic resources), check out this Visuals Engine. I also like PictoSelector, a collection of neutral, simple line drawings for common activities, including personal care: I used this as lot when my guy was younger.

Community Engagement and Volunteering

Loval love is a great (Toronto-specific) community-based website: they call is "your guide to living well & doing good". It's a potential resource for finding communities to engage with (for example, they have a list of community gardens that welcome volunteers).

Meetup is an online organization that helps people connect with others who have similar interests for events and activities, some of which involve a fee. It strikes me as an untapped resource for community building, with a huge list of areas of interest, and possibly a mechanism for creating your own group for your own special interests.

Connections/Information Sharing

Connected Families is a not very active online resource for discussing matters with other families (you need to set up a login to participate). In my experience, it's mostly professionals who respond to queries or comments.

Huddol is an online support group that seems to focus on general health and wellness, but includes a group for caregivers and individuals with disabilities. I have browsed it a bit and it seems short on practical information but might be useful if you're looking for some virtual connections with like-minded people, perhaps similar to Facebook?

Devices and Tools (adapted devices, sensory items, etc.)

Wellwise (Shopper's Drug Mart)
CareEasy (for family caregivers to share responsibilities)

Employment


DANI offers a social enterprise and supported employment program. 

Reach Toronto (located in the west end of Toronto) offers a variety of
youth and adult programs including life skills, financial literacy, employment training and independent living.

The "Completing the Circle program" is offered in several GTA locations and focuses on helping those under 30 who face barriers to employment (not disability-specific).

The Family Support Network for Employment has a variety of useful videos. They offer an online, self-faced "Learning Paths for Employment" program for families. 

JVS Toronto offers a variety of employment programs.

Kerry's Place offers an EmploymentWorks program in different parts of the GTA. The contact person is stephanie.bass@kerrysplace.org, 416-537-2000 x245.

Employers can find resources at https://odenetwork.com/service-agencies/tools-resources. Note that this Oshawa-based organization is not really a resource for families and individuals, but could be useful for families who want to encourage and support employers. The website includes list of agencies who support disabled workers and programs to help prepare for employment.

Job Start: Where Futures Begin is a program for 15 - 29 year olds that offers training and pre-employment workshops, paid placement, and assorted training in a 3 week workshop. They're located at Dufferin and King. Contact Mercy via phone (416) 231-2295 ext. 5723/ 5741 or email m.prempeh@jobstart.org. [added 12/29/19]

A parent has a great blog focused on employment issues for people with ASD or Asperger's: well worth checking out, and includes a self-assessment tool to help people determine what jobs might suit their skills best. For those ready to work, the site also lets you upload your resume if you're neuro-divergent and interested in working from home.   [added 01/04/20]

The Ability Learning Network offers employment supports and skills training. [added 03/07/20]

Woodgreen offers a "Capability" program that offers pre-employment and potential for 12 weeks of paid work experience.. Contact Jessica Singh jsingh@woodgreen.org or 416-405-5292. Office located at Lakeshore and Islington. [added 02/04/22]

Lumenus offers life skills and other programs, including mental health and respite. Services offered in a variety of locations in the GTA, including North York, downtown, and Etobicoke. 416-222-1320 [added 02/04/22]

Financial

The Bright Futures Plan group appears to be a centralized resource for estate planning, Henson Trusts, and the like. [added 090521]

The Planning Network publishes an Estate Planning Guide, as does Community Living Toronto.

Surrey Place hosts the Individualized Funding Library which provides some general guidelines and suggestions around using funding, including hiring workers.

A resource about microboards ("A Microboard is an autonomous group of at least five committed family and friends who join together with a person who has a disability to create a supportive not-for-profit corporation.")

Partners for Planning has an estate guide

General Information

The Ontario Adult Autism Research and Support Network "offers information and communication tools to connect adults with Autism, family members, caregivers, friends, support workers, teachers, administrators and policymakers". Note that it appears to no longer be active, but the historical information can still be useful

Connectability has what is, in my view, a woefully inadequate set of articles intended for adults with ASD or their family members.

Partners for Planning offers a resource "Safe and Secure: Seven Steps on the Path to a Good Life for People with a Disability", available for free (although shipping costs apply).

Housing Resources


In Toronto, the DSO Housing Navigator in Alexandra Shannon. The DSO housing toolkit is found here.

LIGHTS is a Community Living Toronto organization that is involved with independent living for 

LADD is a US-based organization serving adults with developmental disabilities. Although of course their service offerings are not applicable to those of us in Canada, their "Smart Living" program might be replicatable.

This article talks about types of technology that can help people with developmental disabilities live more independently. For a Canadian perspective, see this site.

City of Toronto Housing Plans 

Landlord Connect publishes a weekly list of affordable housing units. (Toronto only)

Ottawa-area lawyer recorded a Housing and Transitions workshop

The DSO has a housing toolkit.

The Toronto Developmental Services Alliance website has a variety of housing-related resources

Reena has a "community residence"

Options for Homes is a social enterprise involved in developing housing.

This website (from a US-based organization) has a good article about person-centered housing

Non-profit for co-housing (Jan 2, 2022)

Independence Skills

Sunflower Developmental Services (sunflowerrcs.com) offers a day program focus on skill development. Ratio of 1:6.  (April 2022)

Individualized and Group Supports

Extend-a-Family offers a variety of services and supports, including Safe and Secure Futures Network family support meetings.

This article discusses pathways to inclusion.

The Individualized Funding Coalition for Ontario has some usefull resources, including, as of  October 2022, a free downloadeable paper about individualized funding. (Nov 2022)



Legal


This resource deals with estate planning and offers an on-screen version of an estate planning guide.

Life Skills

This US-based site (note that this is a paid service or $30 a year) offers videos-based instructions intended to develop cooking skills for people with intellectual disabilities. There's a free 30 day trial. 

Mental Health Resources

Cleaning up some old email and found a link to these resources  provided by HCAARDD. from a virtual course offered early in 2021. Some, but not all, over COVID-specific. Includes supports for self-advocacy, 

Mindfullness and Relaxation Apps

Medito seems like a good offering for Android phones: it is free, has a large number of meditation recordings organized by theme, and includes a timer you can use for independent meditation. Available on Google Play (along with a large number of other such apps).

Outings and Activities (Toronto-based)

This blog lists lots of things to do in Toronto.

Windreach Farm (located north of Whitby) is definitely worth checking out: the people are wonderful, and they offer a variety of programs and events.

Bust a Move: "We provide a safe space for people of all abilities to independently create and express themselves and believe people of all abilities have a voice to make change."

Planning

The Ontario Independent Facilitators Network has an "ideas in practice" site that has some excellent articles. They also offer a variety of resources available on their site and publish a monthly newsletter you can subscribe to on their website, including a list of independent facilitators. You can also connect with them via:
* their Ideas Blog
* their Stories Blog

The Empowering Ability website offers a variety of resources including podcasts and training (for supporters and families. Personal view is full marks for enthusiasm, Mr. Goll's style might not suit everyone.

This is one particular video recording of a presentation on planning for a good life.

The BC-based Plan Institute has an online Future Planning tool.

The Facilitation Leadership Group offers "training, coaching, and consultation" at the community level (not disability-related). 

Programs (Day Programs) and Services

DANI offers day programs.

Respite Services has an online list of fee-for-service day programs.

You can find and register for many fee-for-service programs at My Community Hub, which is, in my not-so-humble view, an extremely badly designed site that is frustrating to use. It covers only offerings from agencies funded by the provincial government.

Autism Speaks Canada's "Connections" has a searchable list of service providers that, for Toronto at least, is extremely limited. Note that you need to register to use Connections. Connections also includes a "Communities" discussion group that seems to focus primarily on children, and a "Resources" section for education, funding and other resources, but nothing I'd rely on or re-visit.

The Community Access Learning Centre offers programs as well as staffing.

SAAAC Autism Centre offers a "Living 'N' Learning Adult Day Program", weekdays from 9 to 3

Recreation Programs

Toronto Parks and Recreation offers programs for adults up to age 29.

DANI offers recreation programs.

Respite

New Visions Toronto offers, in addition to residential (group) homes, overnight respite (you must be registered with DSO).

Improving Lives Respite Services offers in-home respite services and services specifically for high-need individuals.

Sunflower Developmental Services offers "after hours" respite (2 hours), located at Ellesmere and McCowan area.

Resources

Helen Sanderson Associates operates out of the UK, but their website has some good resources that are generally applicable, including information and resources for person-centered practices
 
Search and Rescue for Autism has content for both families/individuals and first responders. The site offers several free safety-related social stories in PDF form.

The Partners for Planning Network 
hosts webinars, has a searchable resource directory and a future planning book you can order or view online

The website of Ron Mallis,Toronto area financial advisor who specializes in disability issues (and who my family relies on and vouches for); includes a blog dealing with issues such as finding Henson Trust trustees and much more.

Autism Ontario has a few articles related to those over 18, and a service directory that, the last time I tried to access it, didn't work.

Autism Speaks has a variety of resources related to adults, although some (most?) might be not applicable to Canada.

Connectability has a bunch of resources that I personally feel are inadequate, but they do have a directory of fee-for-service programs. Their online Connected Families resource sounds good in theory but is not very active and seems to mostly be contributed to by service providers.

Autism Speaks offers several resources, although they may be too U.S.-focused to be useful: Community-Based Skills AssessmentHousing and Residential Supports and an Employment Tool Kit.

Autism Ontario's knowledge base, although not specific to adults and somewhat outdated, has useful information around areas of health and volunteering (including an article I apparently wrote!).

Safety

Although I've managed so far with just a cell phone and the Prey software, there are numerous tracking devices out there to help with people who wander. One company offers a "Lifeline with Wandering" product that might be of interest (I have never used this). 

Siblings

Autism Ontario offers virtual meetup groups for siblings of those with a developmental or other disability, including (but not restricted to) autism. To register, click here. [added Dec. 2021]

This is a video from a sibling of someone with a developmental disability. (Note that Partners for Planning also has lots of stories on their website).

Social

Dreamweavers offers social drop-in programs as well as scheduled programs like one that focuses on social skills through playing board games, and another where participants cook and sell snacks (the last two are typically held at the Miles Nadal JCC).

Miles Nadal JCC (Bloor and Spadina) offers several social programs for people with disabilities.

Kerry's Place offers, at their Rusholme Road location, "The Social", a free program for adults with ASD who want to enhance their social skills.

Meetup groups are intended for the general public, and cover a wide range of interests and hobbies in lots of different locations. Might be an untapped resource for both caregivers and the people they care for.

Support Groups

https://www.huddol.com - online support group for caregivers and individuals with disabilities (not sure it's exclusively that, however)

Support Workers and Services

Pooran Law has some resources about legal obligations when hiring support workers.

Once upon a time Respite Services was a great resource for support workers (through their "CHAP" program), but they seem to have fewer workers available these days. You register with them as a family and then can access an online registry of available workers (who have been vetted by Respite Services). They also can connect you with respite workers.

ARCH Disability Law Centre has a whole page devoted to attendant services, what they are and how to get them, along with other valuable resources about respecting the rights of those with intellectual disabilities. [updated 01/02/2022]

Partners for Planning has a new resource guide for hiring support workers. [added 1/4/20]

Software Tools/Apps

In addition to Prey Project, which I use to track my son (well, his phone, which is pretty much always with him), as described in another post, I find these apps useful:
  • Go Here, an app produced by Crohn's and Colitis Canada, helps you find the nearest publicly-accessible bathroom.
  • There are several transit apps available to help for way-finding, I use Transit.
  • I run big parts of my life with a combination of Evernote, AnyDo, and a shared Google calendar for appointments and events to keep everyone in the family informed, Devon has the calendar on his phone so I can put in reminders about WheelTrans pickup times and the like, although this also sometimes means that DVD release dates show up in everyone's calendar.
Awake Labs manufacturers technology for a shared electronic "communication book" (Reveal Stories), which currently appears to be a pilot project.

Transition Programs

Integrated Autism Consulting offers several transition-oriented programs for young adults with ASD in particular, as well as some recorded planning webinars. Although originally operating out of Barrier, they now offer services in several other Ontario locations, including the GTA. 

Volunteering

Volunteer Toronto is a directory of volunteer opportunities of all types, both single events and ongoing engagements. You can subscribe to their electronic newsletter. They are part of a provincial organization around volunteering: 

Saturday, 31 August 2019

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.

Wednesday, 28 August 2019

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.

Monday, 5 August 2019

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.

Saturday, 27 July 2019

A little less convenience goes a long way

I remember hearing a show on CBC radio one evening where they were talking about a ridiculously fit, healthy and long-lived group of people living somewhere in a rural part of Europe (maybe an island?) who were the subject of a study to examine the secret to their longevity. I recall that the researcher described a very rural, challenging, life, where simply getting through the day required a significant degree of physical effort. Without electricity, many household chores were done by hand, entertainment involved gathering as a community (an activity that involved a lengthy walk), and so on. He contrasted this existence with our comparative life of ease, where we routinely drive to and from work (or the gym), buy prepared meals, use remote controls to access our entertainment or, increasingly, carry it around in our pockets in the form of smart phones. For most of us, there are few opportunities for natural exercise, and all too often we actively work to conspire against those opportunities, choosing the comfort and convenience of the car. The researcher said something to the effect that it wouldn't be necessary to recreate the physical environment of the people being studied to gain some of their benefits. He commented that making it just a little harder to get your snacks (having the kitchen on a separate floor from the rec room) or seeking out even slight inconveniences (taking the parking spot farthest away from your destination) would be helpful..

What does this have to do with life with someone with a developmental disability? I'm sure I'm not the only parent who has many, many strategies for making things convenient for my son (and, not coincidentally, for me too). Whether that means ensuring that some situations never arise or smoothing over those unexpected bumps in the road, I unconsciously go about daily life with at least part of my brain attempting to anticipate and deal with inconveniences, changes in routine, or situations that will cause stress or distress. I even notice that I do it to facilitate things I don't particularly want my son to do, which is pretty stupid when you think about it: how much effort did I just expend trying to get an outdated computer game working on his newer laptop when he plays that game way too much as it is?

So I've been trying to move in a different direction, to make things just a little bit harder. One example of making things difficult with a purpose was how I managed to ensure he got in the habit of calling me when he arrived home from school or program to an empty house. The trick? I simply hid his beloved Nintendo DS. Inevitably he'd call me to ask where the DS was, and eventually this turned into him automatically calling when he got home, even when he was no longer looking for that device. He still mostly calls when he wants something, or wants to tell me something, but the habit was formed by making his life just a little bit more difficult. I also strive to let him make his own decisions, to feel the pain of not being able to buy a new DVD because a few days before he chose to spend his money on a different one. Is this often painful for me too, if only because of his complaining and often anger? Of course it is, but I have also observed how each instance makes him just a little bit more flexible. I remember years ago attending a Geneva Centre symposium and hearing a presentation by a young woman with ASD: she said something like "We have to hear 'no, it's not time for that' or 'no, it's her birthday'  or 'not right now', so we can learn that these uncomfortable situations aren't permanent." In our house we call this "making D uncomfortable/unhappy" and yes, sometimes there is yelling and door-slamming and misery (occasionally on both sides), but when we get to the other side, it was inevitably worth it.