Marigold and David Pearce

 

Marigold and David (Dave) Pearce immigrated to Canada from Great Britain at the end of World War 2. David's older brother had come to Canada during the war to train fighter pilots, and ended up marrying a French Canadian woman and stayed in Canada, so Marigold and David decided to make the journal as well.  They settled in West Lorne, Ontario where they raised 5 children. Dave operated a garage and was an important resource for local farmers, since he could fix just about anything that had wheels. Marigold managed the books for the garage (Dave was much more interested in fixing cars than in chasing customers for payment.) 

In their 80s, they decided to write their memoirs, which their children arranged to be printed for distribution to friends and family. 

Marigold’s Memoirs

Childhood

 I was born in the village of Ringmore in South Devon, UK. My father was Hubert Hannaford, a Devonshire man, my mother, Ivina Maud Edwards, was born in Wales. I'm not sure just where, but my Welsh grandparents lived in Mouth Ash, Wales.

My mother told me I was born during a rare event, a blizzard. Snow was very unusual for our part of the British Isles. I was born on December 23, 1927. My mother named me Marigold Doreen. She also told me I was born with a caul over my face, an omen of good luck.

We lived at the bottom of a fairly long, narrow lane, with high hedges each side. According to Mum, the district nurse, who also was the midwife, had to be carried by two of the village men through the snow so that she was able to assist at my birth,

My parents in effect had two families, as my eldest brother Harold was 22 years older than me and Cyril, the next in the family, was 18 years older than me. Then came my brother Ronald who was eighteen months older than me. I'm sure it must have been a bit of a surprise to them at their ages.

My father served in the Royal Navy during World War 1 but he never talked about it. I don't even know what ship he was on, all I know is that he was a "stoker". I now realize this must have been a tough job with very little chance of survival if the ship was hit, especially as he, like so many men who live by the sea, could not swim.

My brother Harold and my father helped man the buoys when some fishing boat was in trouble. Harold could not swim either, but they didn't seem to worry.

My father was a market gardener. We had a very small vegetable garden and a field where we kept chickens and pigs. He also was a trapper. In those days there were hundreds of rabbits around and Dad would pay for the trapping privilege on a farm. He would set the traps near rabbit holes in the hedges in the evening and next morning went out and cleared the traps. It was very cruel but the accepted way of doing things. The rabbits would then be gutted and sent to our nearest city, Plymouth, on the bus.

When I was older and in school in Kingston, I would see the bus going by with the wooden boxes of rabbits on the top: they, along with our produce, were sent to the market in Plymouth.

Mr. Martin owned the market stall that sold our produce and rabbits. Each Saturday my Mum, Ron and I would go by bus to Plymouth to collect our money from him. Ron didn't always go with us but I loved the market, the different stalls and varieties of produce and flowers and clothes: to me the market was a magic place.. It was a large old building with a high vaulted roof. It was demolished by bombs during the blitz of Plymouth during World War 2.

We used to get up at dawn in the summer to pick wild mushrooms, which only frew in certain fields, especially the ones where sheep grazed. You had to get up early to be the first in the fields before other pickers came. Mushrooms were sent by the basketful to Plymouth. Dad used to take the produce to St. Anne's Chapel (a few miles from Ringmore) to put it on the bus,

We had a Pony and Trap for transportation, no cars or buses from Ringmore in those days. The only bus that came was the school bus to take us to Kingston for the Junior grades and Modbury to finish our schooling as we got older.

School started at age five in Britain but my mother didn't want me to be away all day so I went to a small private school run by a Mrs. Truscott in her home. There were only a few girls, no boys. I sent there until I was about seven.

I used to get cream at Luckeral's farm when I went to school at Miss Truscott's.  Her house was on the left of the road before you come down the rocky road, I think it was the only one there.

In the summer we spent many hours on the beach at Challoborough or Bigbury-on-sea. We moved to a bigger home with a few more fields. Dad decided to let the fields to someone who had riding horses, even though he was a  bit afraid of large horses. I thought it was great and much to my parents' horror would ride the horses barback.

By this time, Harold had married a Bigbury girl, Annie Martin, and was living near St. Anne's Chapel. Cyril was in the Royal Marines, married to Kathleen Doble. I had been a bridesmaid at each wedding. Harold and Annie were married in Bigbury Church, but Cyril and Kathleen were married in St. Andrew's church in Plymouth, later badly damaged by bombs but rebuilt after the war.

When I visited an old school friend in Ringmore in 1986 she remarked that my mother ws always singing, even when she was just talking by: I guess it was her Welshness.

I sang in the choir at All Hallows and was confirmed in the Anglican church. At least, our vicar was Anglican, he was very strict: we females could not enter the church if our head was uncovered. I took my turn at carrying the cross (which was a rather heavy one, very ornate, brass and wood) in the procession of the church from the vestry to the alter, where it was placed during the service.

We were a small choir, three sopranoes, one alto, a bass and a tenor. The organ was a pump one, which meant that someone had to sit out of sight of the congregation and work the bellows pump. Mom often did this. 

There was no electricity in the village while I lived there, no stores either, just the post office where you could get a few groceries. Twice a week a butcher came from Modbury with meat. You just chose a cut of meat or a pound or two of sausages. The beef quarters hung on hooks on the side of the van and the butcher cut you what you ordered.

Groceries were also bought out of the back of a grocery van. There was a bakery in St. Anne's Chapel, we often walked the two or three miles to get bread or saffron buns or a saffron cake.

One summer my parents decided to run a small ice cream and sweet shop on the beach at Challaborough. We made the ice cream ourselves. I enjoyed going to buy the candy at the wholesale store in Plymouth: jars and jars of all kinds of candy or sweets were on shelves, and we picked out the ones we wanted to sell. I'm not sure how long we ran the shop, maybe two summers, just before the war.

We used to go to Challaborough beach and Bigbury Bay. My brother Cyril was a strong swimmer and could swim from there to Borgh Island when the tide was in.

War Years

We were in Ringmore when World War 2 started. My father died of a heart attack soon after the start of the war and life changed in more ways than one.

We were in the flight path of the German bombers during the blitz of Plymouth and Devonport Dockyard. We could see the barrage balloons over Plymouth from Bigbury on Sea. We saw dogfights over the sea. Burgh Island Hotel was bombed one morning. 

 How to Register for Multiple Discovery Connect Programs

1. Open the “FFS Program Links [month] document and save a local copy in a Word file. Take note of how many programs you are going to register for.
2. Right-click on the event you want to register for and click “copy hyperlink”.
3. Paste the link into MyCommunity Hub and register for the program.
4. Go back to the Word file (if desired, you can add something beside the link you just used, e.g. “registered” or some such: this can be handy if you get interrupted part way through the process, particularly is doing multiple registrations).
5. Repeat as necessary, being sure to paste the link in the same instance of MyCommunity Hub that you are logged on to.
6. When you go to the payment stage, you’ll see how many programs you have registered for: make sure that this is the same number as you identified in step 1.

6.      When the process is complete, make a copy of the receipt for Passport purposes: click Print Full Receipt (in the top right corner) and save the receipt as a PDF. Give the PDF a distinctive name (e.g. “Discovery Connect May 2024”) and save it locally. (As mentioned in another article, I add the dollar amount and the month/year to the PDF file name, which makes it easier when it comes to submitting the expense to PassportOne. and then add "done" to the file name when I submit the PDF.  (I also set up a folder for each fiscal year,  in order to keep my receipt organized.)

From the perspective of a truly great teacher

I won't lie, much of my son's education experience seemed to be a battle of one kind or another. It was exhausting and depressing and although it's been more than a decade since he was last in school, occasionally (very occasionally) I beat myself up for not doing enough to fight that battle. I was cleaning up my laptop at the end of a tiring day and stumbled across this comment that I had captured from one of his teachers. It certainly lifted my spirits: so few people bother to take the time to understand my son, even fewer are willing to see his value. Here's what she wrote. It might not seem much to you, but it meant the world to me.

Although Devon joined the class during Term 2, it is hard to remember what the class was like without him. It seems as if he inadvertently became the voice of reason and the unofficial timekeeper among the students. His idiosyncrasies have become an important part of the fabric of our blended culture and each of us lose a bit of our being when we are forced to accept the fact that Devon will not be in our class in September. Hearing him say phrases such as "It's 1:45, Ms <name>, we have to go to the Computer Lab" or "Today is Tuesday, Ms. <name>, you forgot to put on the Wii" or "That's not right, you shouldn't put that there!" or "Oh oh, you shouldn't have done that, you are in trouble" will resonate with me for a long time. 

Observing how his resilience motivated others to take risks has had a profound impact on me.

There were times when Devon was scared and confused; there were times when he completely lost his spatial sense, but he trusted the familiar face that he saw and the familiar voice that he heard, and he regrouped. Whenever Devon had to leave an activity that he loves to participate in something that did not include his classmates, he was hesitant, but he trusted our promise that we would be there when he returned, and that he would get a chance to participate next time. His classmates watched and learned from Devon's reactions that change can be seen as an added spice to life.

Rolfing your kids’ life

 

Rolfing is a massage technique that involves putting lots of pressure on a tight nerve/muscle in order to release it. It’s a good metaphor for a strategy I’d like to recommend, particularly to those parents (and I know you’re out there, ‘cause I married one) who spend a fair bit of time trying to make sure that things remain the same in your kid’s life. I totally understand the temptation to do this, but I have to confess that when I hear stories from parents of young kids about how their child had a meltdown because the school bus was late, or they drove a different route to the mall, or those media stories about a kid who will only eat [insert name of some product that has been discontinued], I sigh a little. To be fair, I sigh a little at the way I often did this when Devon was small: I still remember when we discovered that Loblaws was no longer producing their frozen jumbalaya, which Devon adored, and my husband actually got them to give him the recipe for cooking it himself so we could keep him stocked up (all these years later he can take or leave jumbalaya, but we still make it occasionally for old times’ sake). And just to be clear, I’m not suggesting that you disrupt routines half an hour before everyone’s heading out the door for the day, or at a time where everyone’s stress if a little higher because of travel or holidays or whatever. Here’s what I’m advocating for:  (1) regularly change up routines and (2) give your kid choices and let them deal with the consequences of those choices.

For number 1, I like to use the “same but different” approach, like going to a different grocery store or library, some place that is almost but not quite the same as the favoured destination. Or getting pizza from a place that’s not the usual one. Buying groceries at a different store (within the usual chain, or at a different one). Eating at a different location with the same fast food menu. Travelling a regular route with slight variations each time.  Seeing a movie at a different cinema. The changes can be tiny, but in my experience they’re cumulative. Like any new thing, don’t try this at a time when you (or they) are particularly stressed. In my experience, doing this enough leads to a tipping point where you can do such wondrous things as eating at a restaurant that is not a chain.

For number 2, the possibilities are endless. Red shirt or blue shirt? Orange juice or apple juice? Jam or peanut butter? Bath at 8 pm or 8:30 pm? Watch two shows and then the TV’s off, or watch one show then have a break and watch another show? See the movie at 2:00 or 3:30? At this cinema or that other one? Start with easy win-win choices with limited possibilities (e.g. “no juice” is not an option)- the idea is to encourage a choice at all.  When you’re both comfortable with that, you can work on choices with actual consequences. My personal favourite is pointing out that when all of [insert name of most favoured food] is gone, there won’t be another one until whenever you say so. For example, my guy loves those BBQ chickens from the grocery store, and would I suspect eat the whole thing in 2 days if we let him. I used to try to rein him in but then I stopped once I made it clear that another chicken would not be forthcoming until the next week. This led to numerous occasions where I observed him take the chicken out of the fridge, pause, think, and put it back again: a sight that brought genuine joy because it showed me that he was thinking of the consequences and making a conscious choice. Does he still complain? You bet he does, but nothing ensures that the juice will be kept in the fridge like a morning with no cold juice to drink. It’s the same strategy I describe in the [article about fast food choices]. Obviously there are limits around safety: I wouldn’t let him go out on a winter’s day with just a tshirt, for example, or leave the house without his wallet and cell phone because those consequences are a bit too high, but if he wants to blow all his money on a completely unnecessary item and be broke for a week, or run his cell phone battery dry at home because he can’t be bothered to plug it in, or pay a fine because he wasn’t paying enough attention to when his library books were due back, I’m good with that. Yes, I may hear complaining about whatever the instance was, for much much longer than I really care to hear about it, but that’s a small price to pay.

I really believe this works: there are times when I turn to  my husband in utter astonishment as our guy sails through an event that would once have resulted in a week’s worth of argument and unhappiness (I’m talking about something like the ice cream machine not working at a Mcdonalds here, not a major life crisis). He still complains about it (sometimes so much that I have to draw an arbitrary “you can complain about that X more times” and then count down the times) but not nearly as much as he would if I was still investing extra time in making sure everything in his life went smoothly. (I still find it funny that he will complain about the non-occurrence of something he didn’t particularly want to happen in the first place!)

I used to be wildly stressed at unexpected changes (stressed on his behalf and in anticipation of his reaction, but frankly I’m not keen on them either) but I’m  much more confident in his ability to handle them now. I try not to be unfair: if there’s a known change, I write it out and let him read it (harder to argue with a piece of paper, and easier for me to redirect the endless pressure for clarification to the written word), but none of this happened by accident: invented changes are much easier to control than unexpected ones.

I drew the inspiration for some of this from a speaker at a long-ago Geneva Centre conference, an articulate young British woman on the spectrum,  who said something like “we have to hear ‘no’, we have to hear ‘it’s not your turn’, so that we know we can live through those experiences and come out the other side unscathed. At 25 my guy still continues to astonish me with new interests and ability to cope with change and new experiences, and I hope I don’t sound too immodest when I take just a wee bit of credit for that.

Small Joys

 Although my guy's foot repetoire has increased over the years, he's still quite a selective eater. Many years ago when one of the programs he attends would go to a mall food court once a week, he picked up the habit of taking a picture of his food (I suspect he was mimicing the behaviour of some other participants, I seem to recall that was a thing once upon a time, and he doesn't do that at home). The other day one of his programs was doing a cooking class and made pizza bagels. I wasn't sure how successful that would be (he likes pizza, but not bagels) but was thrilled when not only did he report that he had in fact eaten that lunch, but showed me a picture of the pizza bagel he had made. A small, small thing, but a joy nevertheless. 

What Donald Trump Can Teach Us About Behaviour

Like a lot of Canadians, I suspect, my family have spent more time thinking and talking about U.S. politics in the last few years than ever before. Among other symptoms of this peculiar and unbecoming habit was the inclusion of a fair bit of U.S.-focused podcasts in our listening habits. One of the podcasts my husband has been listening to is called "What Trump Can Teach Us about Con Law". In the days following the U.S. election, I found myself reflecting on what Trump can teach us about behaviour, hence the title for this post. 

Everyone except those closest to him can see they are dealing with someone who has been insulated, by family and handlers and privilege, from the consequences of his actions for, presumably, his whole life. He has, reportedly, taken unfair advantage of others in matters financial and personal, routinely lied without being called on it (or, if called on it, doubled down on those lies), been verbally, physically and sexually abusive, and on it goes. What makes him think he can get away with it, we ask? Of course the answer is simple: because the people in his life prevented him from ever experiencing the consequences of his actions. 

So what does this remind us of? Nothing more or less than the long-term consequences of insulating our loved ones from the consequences of their own actions and choices. We do this for love, out of fear,  to prevent potential harm (of all types), to save time, and for many other very good reasons. Maybe I'm a meanie, but I take a small, secret amount of pleasure whenever my son suffers (mildly) as the result of his failure to make his own choices, whether that be getting wet because he didn't check the forecast (or the sky), or not being able to purchase something he desires because he didn't monitor his bank balance, or anything else that is perhaps unpleasant or unhappy-making, but not actually dangerous. 

Sibling Resources

 https://canadiancaregiving.org/siblingscanada/

Individualized Funding

"The Individualized Funding Coalition for Ontario (IFCO) is pleased to be launching a comprehensive paper called: Now is the Time, Key Principles and Core Elements to Bring About Effective Individualized Funding Mechanisms in Ontario." Download it from here.

Mental Health, Informed Decision Making, and Medical Resources for Adults with Developmental Disabilities

Cleaning up some old email and found a link to these COVID-related resources  provided by HCAARDD. from a virtual course offered early in 2021. Some, but not all, over COVID-specific. Includes supports for self-advocacy. They also offer a "Family Matters Toolkit" and a information that can be shared with healthcare providers. [2022/11/13[

Additiona COVID-related resources:

• HELP during COVID-19: Thoughts about Spporting Mental Health
• CAMH FAQ and Resources
• picture stories and guides to support individuals
• for caregivers: self-care during COVID-19
• staying connected during COVID
• online programming ideas
• connecting with other families
• my COVID Checkin tool 
• Steffi Explains It Clearly 
• HCAARD COVID page

Awake Labs purports to have wearable technology to help caregivers (and individuals themselves) monitor stress levels in people with developmental disabilities.

Apparently the University of Toronto's School of Dentistry provides emergency dental care for those who pay an annual membership. 

CAMH runs "Project ECHO" with a focus on mental health issues for adults with intellectual and developmental disabilities. It appears to be targeted to professionals, but it's not clear if they would explicitly exclude parents/caregivers. At a minimum it might be a useful resource to share with the service providers in your child's life. [2022/10/06]

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. 

Resource for bereavement: 

• Talking End of Life
• Let's Talk about Death, Dying, and Coronavirus video
• Supporting People with Learning Disability in Bereavement webinar recording

Resources for informed decision-making:

• Decision Making in Health Care of Adults with Intellectual and Developmental Disabilities
• Advance Care Planning 

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 

In Praise of Audio Books

 Although I have no memory of my parents reading bedtime stories to me, I do remember my father talking about how his own mother would sit on the landing outside his and his siblings' bedrooms and read to them. I read to my kids, and my husband used to read to me at bedtime, until we discovered that being read to makes me fall asleep so fast that he'd end up reading to an unconscious wife for 20 minutes or so, causing much confusion when he took up the story again the next evening. And of course we read books to our own kids when they were small. We are very much a family of readers, library users, and book collectors.  

A few years back I discovered quite by accident that playing an audio book in the car was not only entertaining for me but also appeared to greatly reduce my son's anxieties when travelling by car to an unfamiliar place or for a non-routine purpose. Listening to a book doesn't put him to sleep, but it does pretty much eliminate his anxiety-driven chatter and frequent requests for reassurance about our trip. As a bonus, when you return an audio book you checked out on one of the library apps, the app keeps track of where you left off, which is handy if you have to return it before you're done. 

For shared listening I tend to check out classic books that we are already familiar with, like A Wrinkle in Time or The Hobbit, to name two of the more successful audio adaptations we've listened to. It really is astonishing how peaceful and calm car travel becomes when accompanied by well-written and well-read stories. It appears that the attention my son has to devote to listening to the story reduces the amount of attention he has left over to devote to whatever he is worried about. I recommend listening to a selection from the book before committing to it, though, since some voices seems more suited to the content than others, but otherwise this is another example of one of the great riches available to us (for free!). 

How to set up and use a shared Google calendar

 My son has always loved calendars and continues to ritually keep three of them in his room - one "Melissa and Doug" wooden one with magnetic numbers, one with pockets for the numbers and one where he affixes the numbers with sticky tape, thumb tacks, or both (and no matter how tattered that one becomes, it's not an easy to get him to accept a new one). I suspect it's a way for him to instill order in his life and also to feel a sense of control. He also has a Google calendar on his phone, and insists on printing its contents for the month precisely on the first day of the month and internet outages or printer problems are always a huge issue. We also have a family Google calendar for things like appointments and program times/days, which everyone has on their phone: these days I add zoom meeting details to calendar events so that everyone has them available. I also use the calendar to impose a schedule for meal times, start-of-day and end-of-day hygiene activities, hair-washing nights, etc.

In the event that you too want to be wildly scheduled, here are some simple tips.

To create and populate the calendar.

1. create a new gmail account for these purposes (I do this because I use other Google calendars for other purposes and I don't want my guy to, say, delete that dentist appointment he doesn't want to know about, or to receive reminders for days/times of TV shows I have no interest in watching)
2. log in to Google with that account (click the "person" icon in the top right corner of the toolbar and enter the gmail account information)
3. go to calendar.google.com (you might need to sign in again)
4. add events as necessary; including reminders
   for example, there's a daily event to remind my son to brush his teeth and wash his face, another to remind him to plug in his phone, etc

Add the gmail account to your mobile devices and away you go! As annoying as it is to have multiple calendars, I find that because the reminders for my son's activities show up on his beloved phone, he's much more likely to pay attention to them. If I notice particular events that he just cancels the reminder for, we have a chat about that. (He has his own calendar as well in which he can enter whatever he wants.) 

How to use My Direct Plan: A Basic Guide

This article deals with the most typical processes involved in making a claim to be reimbursed for an expense. Depending on what funds are spent on, you may not need to perform all the steps described here.

Note as of Dec. 2, 2021: When submitting worker  hours, for the temporary $3 an hour top-up, don't include that as a separate item, just increase the reported hourly rate by that value so, for example, if before the top-up you paid $20 an hour, report $23 an hour. They'll look after ensuring that the extra $3 an hour is not taken from your budget. If you're trying to figure out how to use your remaining funds at the end of the fiscal year, submitting an invoice for more than the balance might mean the invoice ends up in the "Action Required" status: if so, you click "Resubmit" and they'll reimburse just the balance. Or you scrape up invoices that are exactly or just under the balance.  

Depending on the category of the submitted expense, it may take the portion of the excess amount from next fiscal year's funding; this will put the next year's funding in a negative amount. 

Note also that if you submit two receipts for the same amount and the same date, the invoice will be flagged, but you can resubmit them to confirm that they are in fact two separate items (by clicking the action button).

Note: These is not in any way an official My Direct Plan document, and reflect my experience. They are accurate to the best of my knowledge based on the functions available in My Direct Plan as of April 1, 2021. They are intended primarily for use by those who are administering funds on behalf of someone else (a “fund administrator”). They do not cover all the features of My Direct Plan,such as using the budget planning tool or reimbursement for out-of-province expenses. My Direct Plan offers a Frequently Asked Questions section (go to https://mydirectplan.com and click FAQ in the top bar. 

This article is available in PDF format: click here.

­How to Get and Organize Electronic Receipts

For a PDF version of this article, click here.

Preparing for Electronic Receipts

Setting up an Organization System for Receipts on your Computer

I find it useful to collect electronic receipts whenever I make a purchase, rather than waiting until it’s time to submit them, but you might prefer to collect them monthly. Regardless of your process, organization of the receipts is important.

I store electronic receipts on my computer in a folder structure that looks like this: 

As I collect receipts, I put them in the “To Submit” subfolder. When I submit a receipt, I move it to the “Done” folder for the month. If you prefer not to move files between folders as you submit them, another option is to change the file name of the receipt to include “done” (e.g. Corbrook_45_done) and keep everything in one folder. This may seem like over-kill, but I find that I have significantly more receipts in this time of COVID, and that, combined with the change of getting interrupted frequently, led me to adopt this system.

The key thing is to capture receipts as you go rather than trying to collect everything at the end of the month.

With COVID-allowable expenses such as internet costs or streaming service subscriptions that are typically paid automatically at a specific day per month, you might consider creating a “placeholder” text file for each and copying it into each month’s folder, as a reminder. So, for you example, you might have, in your “To Submit” folder, with names like Internet,  iTunes, Netflix, Apple TV, etc.

The files would be empty, they’re just there to remind you to track down a receipt and you can delete them when you have the actual receipt.

Setting up a Naming Convention for Receipts

The names of the electronic receipts provided by organizations vary and are sometimes not particularly descriptive. Where possible, I rename files to make them easier to recognize. In particular, I try to Include as much identifying information in the file name as possible, including the name of the program, the dollar value, and the date range (all of this information will be required when you do your submission). For example, Corbrook_March 6_12_45 or Worker_March1_20_250. 

The time it takes to do this is more than compensated for in the time it saves me when doing a submission.

 

Getting Electronic Receipts

 Below are some suggestions for ways to get electronic versions of receipts, in no particular order.  Note that My Direct Plan supports pdf, jpg, jpeg, gif, tiff, and png files, and presumably other systems such as eClaims do the same. If the site you are uploading receipts to imposes size limitations for a month’s submission and you submit a lot of receipts at a time, you might want to use .jpg format, which is relatively small.

 

Getting Electronic Receipts Directly

Your service provider might send you electronic versions of receipts directly. Support workers may also provide you with electronic receipts.

For Programs Registered for In My Community Hub

1.     1. From the home screen of My Community Hub, click Receipts. You see a list of all available receipts.

2.     2. Click on a receipt number to display the receipt on your screen.

3.      3. Click on Printer Friendly Version to display the receipt in a separate window in a form that is suitable for printing.

4.      4.Click Save and save the file in a graphic file format.

For Netflix:

1.     1. Open Netflix.

2.     2. Click the down arrow adjacent to your name in the top right corner, then click Account.

3.     3. Click Billing Details.

4.     4. Click on a date. The bill opens in a new tab: use one of the methods described earlier to capture it electronically.

For iTunes

I get a monthly receipt emailed to me and I print it to a graphic file (more on this later) and save it. The process for viewing your account details in iTunes requires setting up two-factor authentication, which I figured was more effort than it was worth for an $11 a month expense, but we’re not purchasing any items, just paying for the streaming service.

For Disney+:

1.    1. Hover the mouse pointer over the icon representing your login (top right corner) and click Account.

2.     2.Click Payment History.

3. You see a list of monthly invoices.

3.     4. Click on the date of the invoice. The invoice is shown in a pop-up window, which includes a Print button.

4.      5. Click Print and choose the printer destination (or save as PDF.

Producing Electronic Receipts from Paper Versions

Take a Photograph

Place the receipt on a plain white sheet of paper and take a photo of it with your phone. I find this difficult to do from above, so I sometimes use sticky tac to attach the receipt to the paper and then use a magnet to attach it to the fridge so I’m taking the picture face-on, as it were. Email the picture to yourself, then save it to the appropriate folder.

 

Scan the Receipt

Many home printers include a scanning feature. Be sure to save the scanned image to the appropriate folder.

Create a PDF Version Using a PDF Printer Driver

If you find you can’t save an electronic file in PDF format, add a PDF printer to your computer and then print the online receipt to that printer. There a bunch available, such as Bullzip (https://www.bullzip.com/products/pdf/info.php) and Cute PDF (https://www.cutepdf.com/products/cutepdf/writer.asp). As with any software, make sure it’s legitimate before downloading it. Once you have one of these drivers installed, when you click “print” you can print to a PDF file, which you can then save to the appropriate folder.

Use ALT+Printscreen

Display the receipt on your screen, then press the ALT key and the PrintScreen key simultaneously. This copies whatever is on the screen to your clipboard. Open another application, such as a graphics program or even Word, then press CTRL_V (paste). That pastes the image into the application. Save the file you pasted the image into with an informative file name, and save it to the appropriate folder.

Use a Graphics Tool

There are many of them out there, including antiques like Microsoft Paint. Windows 10 has a built-in “snipping” tool that’s pretty easy to use: just run it, click New, then drag the cursor over the text you want to save as a graphic, then click Save and save the file to the appropriate folder in one of the allowed file formats.

Don’t Forget to Print!

 For any receipts that you'll be using for tax purposes, print the electronic version when you do your Passport submissions: that will reduce (somewhat) the paper chase come tax time. 

Don’t Forget to Print!

For any receipts that you’ll be using for tax purposes, print the electronic version when you did your Passport submission: that will reduce (somewhat) the paper chase come tax time.