Worker dogs and petter dogs

 For mysterious reasons, my guy has always called service dogs "worker dogs", which is a pretty reasonable term, all things considered. At some point in his life he must have either been corrected for trying to pet such a dog, or witnessed someone corrected for that, but he unfailingly calls attention to dogs that are not "worker dogs". Recently we encountered a very enthusiastic black puppy on the street, the kind that throws themself at your legs and strains so hard on the leash they end up practically horizontal. As we walked away from that encounter, Devon announced that that was a "petter" dog. So that's what we call them these days!

Toronto-based programs for adults

Toronto Parks and Recreation offers in-person programs, including Active8, at various locations, throughout the year. They also offer dropin programs.

Reach Toronto offers a variety of programs, including life skills, pre-employment programs, and financial literacy programs, including a pre-employment program.  

Dramaway offers many programs that can encourage and support communication and social engagement

DreamWeavers offers gaming and social skills programs.

The TDSB offers "Free, accessible community programs and services for employment, English language classes and settlement for newcomers, career training, skills upgrading for adults and youth in the Greater Toronto Area". 

New Haven offers a variety of programs for adults, including therapeutic supports, community access & participation, parent training, pre-vocational and work placement. (Located in Etobicoke.)

"something is different: different is good"

Fans of the movie Groundhog Day will probably recognize the source for the title of this post. My husband and I are big fans of that movie and the quote in the title of this post has become a catchphrase of ours to use whenever our son does something he has never done before or even something that he has steadfastly argued against doing for years and then just, you know, starts doing it. This includes things like eating foods he would never touch before, taking pills when he has a bad cold, adjusting to changes in schedule and routine, and all that sort of stuff. None of these are life-changing, but still worth celebrating. 

One of these changes is around food choices: the homeless shelter where he volunteers provides a lunch that essentially consists of whatever has been donated recently, and he's done astonishingly well at eating things he would never have eaten before, either because there are no other options, because he's hungry after working all morning, or because of the community-type setting for the meal, who knows?

Another change, most recently, was around pop drinking. This is a guy who loves his colas (Pepsi or Coke) and has successfully argued (in his own way) that the diet versions are slightly more acceptable then the regular ones. My husband and I tend to drink ginger ale, when we drink pop at all, and often have one of those 2 litre bottles in the fridge. Up until now, Devon has completely ignored this beverage, but recently I found him pouring himself a glass. Why? Because at a recent yard sale he bought a set of four glasses with different pop logos on them, and I guess he figured the closest he'd come to Sprite was ginger ale, so he started drinking it from that glass. [updated March 2022] 

Hiring a worker

Added Feb 2023: this website (https://www.care.com) claims to provide access to support workers: when you visit the site you're asked a few basic questions and then are presented some candidates you can choose from. There's a fee involved. 

 

First and foremost, take the time to really think about both what qualities you are looking for in a worker and what responsibilities you want them to take on.  You also need to consider the environment in which the worker will engage with your loved one, for example, if they will be going to the gym you probably want someone of the same gender as your loved one. Shared interests are also important, in order to have a positive experience for both. Over the years I've hired people with extensive training and experience and people who've never been a support worker in their life - it really depends on how vulnerable your loved one is. Ask for and check references.

Do one interview without your loved one present, to get a basic sense of the candidate, then do a follow-up interview with your loved one involved. You might also want to negotiate a series of shorter engagements while you assess everyone's comfort level. I ask workers to keep a notebook where they write down what they did and any questions or concerns.  

In the old days, respisteservices.com was the best place to go to find a worker (see below), but it is much less active currently (2020). I have had success putting a classified ad in a local paper and posting ads at community centres. You might also be able to place ads at community colleges or universities. Ideally someone who lives in your general neighbourhood is good, not just because they will be familiar with the community but because you won't have to incur additional costs to pay for transportation (particularly during COVID where you might choose to pay for a worker to avoid public transit). 

Here's the process I generally follow when looking for a worker through respiteservices.com (which, as of 2021, is not the resource it used to be):

I look at the "worker classified ads" on the respiteservices.com website and ask to get the profiles of anyone that seems like a possible candidate. I also ask them to do a search for me based on my criteria (area of the city where I live, hours and days I'm looking for). That gives me a pile of profiles to look
I go through the profiles looking for things that give me some clues as to how close each candidate comes to my wish list. I read over the description of what they've done and try to imagine how that might relate to what I want them to do. For me, I'm less interested in formal training (because I'm confident of my training abilities) but I do like to see signs they've got some creativity and initiative (because I'm not going to be handing them a program to deliver). Because my son has no medical issues I'm less interested in someone with extensive experience with people who have a physical disability, suspecting (unfairly, I'm sure) that they'll be overly protective of my son. I write notes on the profiles and group them: one pile for people I'm not interested in, one for people I am interested in (and because I'm way too organized, I usually put that pile in order from highly interested to not interested at all). I ask my husband to go through the resumes too: a second opinion is very valuableI send an email to the people I'm interested in. I make sure my message covers all the main points: the location, the hours, the pay, the things the worker is expected to do, the environment (e.g. we have a cat), and above all a profile of my son. I keep it short and positive - I want to be honest, but I also want to attract people to the job. I ask people to let me know if they are interested and to send me a resume if they are.
I keep notes on the responses for future reference, even if someone says they aren't available (you really can't rely on the details in the profiles - nobody ever seems to go back and update them when their situation changes). This is very helpful if you need to hire someone again (which you will, for sure) - it saves time to know what they said last time you contacted them.
I set up an interview with my top choices. I prepare a list of questions (sometimes with specific questions for specific people, if I want to learn more about some education they have, or a work experience). I ask for references. I have found it best to time the interviews for 30 - 45 minutes before my son arrives home from school (or for a time when he's out at a program but returning in 30 - 45 minutes) - that gives me a chance to focus on the candidate first without distractions and then observe how they interact with my son (or, worst case, wrap up the interview and send them on their way before he gets home). Like with the profiles, I'm listening and looking for the things on my wish list. It's easy to get side-tracked with interesting things they've done and forget that those might not be particular relevant to your situation. I encourage people to talk about their philosophies and their experiences. I try to assess whether they'll deal with me honestly (not just trying to give the answer they think they should). I get references - and I call them and ask some specific questions, if I can. The biggest thing I look for is how they respond to my son when they meet him and how he responds to them.
I follow up with people who I interviewed (I never tell them in the interview if I'm interested or not - I tell them I want them to take time to think about the opportunity while I think about whether they're a good fit). I make an offer. I don't make them sign a contract or anything - I haven't had anybody just not show up, and unless you plan to sue someone for breach of contract, there's not much use in having one. That said, I do put the requirements (time, payment, requirement to register with Passport or whatever entity you use for claiming worker-related costs) in writing.
You might suggest a trial period of a month, at the end of which you and the worker can both decide whether to continue. You need to discuss and set up any resources the worker will need (for example, I have the worker keep a log book, and I leave notes in it about chores that need to be done, favourite foods, reinforcers, etc.). You might want to establish a schedule for the worker to follow or leave things open, but in a new engagement it's easiest if you give the worker some concrete tasks to engage your loved one in.

It can be hard for a worker to establish a relationship with a child when a parent is right there, but it can be equally hard to leave a vulnerable person with someone new. Some people monitor the home with a camera, which I don't feel is appropriate. You might choose to work from home a few days when a new worker is there. Bottom line: if you don't trust the worker, don't hire them, and be prepared to drop one if there are any concerns or warning signs. 

 

This is all very general advice, and your needs (and those of your loved one) will vary, but as a rule if you put in the work to find a good candidate, do a good job of explaining their responsibilities, involve you loved one in the decision, and do regularly check-ins, all should be well.

Who's perseverating now?

When my son was young he was given a fairly uncommon diagnosis on the autism spectrum (PDD-NOS, which I came to think of as meaning "no clue what's up, but he ain't normal"). As a result of the diagnosis, for a number of years I was fairly active in the autism community in Toronto, even though in retrospect any autism-related diagnosis seems inappropriate for him. I suspect the world of autism has changed in the years since then, but one of the characteristics I recall being from those early days was "perseverating", and whatever the actual meaning is, I understood it to mean feeling compelled to do certain things repeatedly or even ritualistically.  

So when I found myself at a Walmart at 7 am on a workday because I couldn't find any small glass bottles of Coke in the local grocery stores and my shopping app told me Walmart had some, that was perseverating. And why was I looking for glass bottles of Coke? Because back when my son's Coke passion began, I somehow got the bright idea of putting a small glass bottle of Coke in his Christmas stocking. And here we are, roughly 25 years later, and I'm still doing it. Also in the Christmas stocking? An orange. Why? Because my mother did that. Why did she? Because she was British, and from a working class family, and in her childhood an orange was an unparalleled treat. And why do I wrap small trinkets in tissue paper (not Christmas wrapping paper) for placing in said stockings? Because she did that too, although I don't really know why. And why do the stockings go on the end of each child's bed? Same answer, although how she had the patience to wait for 5 unruly children to fall asleep on Christmas Eve I have no idea. 

So I have to ponder this - why is a behaviour that we "normal" people do, with no more logical reason than tradition, considered perfectly acceptable, while behaviours that people with autism or other disabilities do without apparent logical reason considered a pathology that needs to be fixed?    

5 Things My Son Learned to Do After Age 21

If college/university isn't an option, it sometimes seems like everyone assumes that after age 21, there's nothing much our kids can really learn, at least not if they have significant cognitive challenges. Here's a list of 5 things my kid has learned since leaving school: they might not sound big to some people, but I'm kinda proud of them.

(1) How to take pills. Leaving aside the bad old days of a serious seizure disorder where he was on liquid medications, my kid is pretty darned healthy. He tends to have only two modes: perfectly well and too sick to get out of bed. However, being able to take pills is a pretty basic life skill, so I figured I better get around to it. We started, as people do with small kids, with small candies, and then moved to a multi-vitamin. It was surprisingly difficult to find out how big a particular multi-vitamin might be, since they all come in opaque cases, but with a little help from the people at Noah's, we bought a bottle of Platinum Naturals Easymulti multivitamins. They are gel pills, and quite narrow (though long). We added a regiment of taking them at breakfast, and picked up a cool pill dispenser at the dollar store that helps him keep track of whether or not he has taken it (like the one below, but with day names on the compartments). Now I feel a little better knowing that if he's prescribed an actual medication he will at least know how to swallow it. 

(2) How to use a Presto card.

(3) How to ride in a WheelTrans vehicle (typically a cab) with different drivers and often different co-riders.

(4) How to wear sunglasses. One of his program gave some out to thank people for their volunteer work, and he absolutely loved them (he wears them over his regular glasses) and always checks the weather to see if he should wear them. (I got the eye doctor to check them out and make sure they were safe.) He looks just a little goofy in them, but who am I to judge? We keep our eye out for this particular model everywhere we go, in case he loses them, which would be a major issue.

(5) How to use a debit card: a skill that became particularly useful when the pandemic hit!

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Workshops, peer groups, programs and resources for caregivers

Support Workers

Care.com claims to be able to provide support workers for a variety of needs. Given that respiteservices.com is very limited these days, this might be an alternative.

Healthcare Resources

Family Matters Toolkit

From HCARDD (Health Care Access Research and Developmental Disabilities) - This toolkit is for caregivers who are interested in improving the health and health care of a family member with intellectual and developmental disabilities.

About My Health - "a worksheet for people with intellectual and developmental disabilities to fill out and share with health care providers to make the health care visit a success"

Peer Support

Safe and Secure Futures Network meets on Tuesday evenings. Based in Toronto. "Safe and Secure Futures is attended by parents and loved ones who have a family member with a developmental disability. Themes around creating a Good Life, with Real Friends, Real Work, Real Home, Real Opportunities, and Creating Support Circles around us, and our family members… are all discussed + explored here. It’s a safe space to share, learn, support one another, and grow." 

RSVP to ssfne@extendafamily.ca.

There's a private Facebook page, started by Bonnie Heath of Scarborough Residential Alternatives, for parents of children (of any age) with a developmental delay who are "looking for support and guidance from various family networks". [added Apr 2022]

Workshops/Training

Ontario Independent Facilitation Network

• The Power of Leisure Identities & Valued Social Roles, December 7 and 9 10 - 3 EST
• The Power of Possibility: Who I Am and Why I Do What I Do, January 18 and 19 10 - 3 EST
• Conscious Learning and Speaking, March 1 and 3, 10 - 3 EST

registration link ($150 per course, $400 for all)

Caregiving Essentials course offered any time between Oct 12, 2021 and July 8, 2022, ends August 8, 2022, free, self-paced, learning.

Planning for a Good Life

Safe and Secure: Seven Steps on the Path to a Good Life for People with a Disability

Organizations

HAND Housing Alternatives Network Directive - this link is to the Halton CLT website, there may be groups in other regions as well

www.oifn.ca  - Ontario Independent Facilitation Network is where you can find information about facilitation, what to ask when choosing a facilitator, and some stories of how families have used a facilitator effectively

Facilitation Leadership Group - provides training and consulting for facilitators

Financial

latest info about support worker temporary wage increase

Mental Health Resources

https://self-compassion.org/

https://familydoctor.org/talking-to-your-doctor-about-your-mental-health/

https://www.compassionincaregiving.com/ - a mental health service provider for caregivers (fees involved)

McMaster University has a free "Caregiving Essentials" program and a newsletter you can subscribe to