Sunday, 6 December 2015

Devon decorates his tree

(I wrote this in 2008 and a shorter version was published in Autism Ontario’s quarterly magazine. I think it stands the test of time and yes, although he is now much older, the Devon of the story still has his own tree in his room.)

Some time ago, in an uncharacteristic moment of parental competence, we bought two small artificial Christmas trees for the kids – one for Pearce, our late-teen daughter, and one for Devon, our early-teen son, who has an autism spectrum disorder. Our motivation wasn’t to preserve the Martha Stewart-like integrity of the family tree: it was more to distract the kids, particularly our son, in the relentless pre-Christmas season that begins, it seems, shortly after Labour Day.


December 1 is the absolutely earliest date on which the trees can be put up – and despite Devon’s passion for calendars, the count-down can be relentless. Finally the promised day arrives. As the fates would have it, December 1 shows up on a Saturday where my husband is working and Pearce urgently needs homework help. So I get her started on her essay outline, and bring up Devon’s tree and a small box of unbreakable ornaments. I set up the tree in his room upstairs, hand him the box of ornaments, and return to “Lord of the Flies” (the topic of my daughter’s essay).


Maybe five minutes later Devon comes thumping down the stairs – a kid who weighs less than the family dog, whose match-stick limbs are so pale he practically glows in the dark, he still manages to descend and ascend stairs with an impressive thumping. “More decorations” he declares (Devon never uses ten words if two will do). I give him a look, and he reluctantly expands his statement: “I want more decorations”. Leaving my patient daughter to her essay on bloodshed and societal breakdown, I head to the basement again, this time with Devon on my heels. We locate another container of unbreakable ornaments and he heads upstairs to his room with them.


Five minutes later he is back again – this time he doesn’t bother asking but heads straight to the basement. I’m engrossed in the discussion about beast imagery in the classic novel, but not too engrossed to notice what he retrieves – several shiny silver-coloured shower curtain hooks, and a bar of soap. “What are you going to do with that bar of soap?” I ask. “My tree” is the reasonable, if brief, response. “You’re going to put a bar of soap on your tree?” I ask, my voice full of skepticism. He brushes by me and tromps up the stairs again, chanting “bar of soap”, “bar of soap”, “bar of soap” as he goes. Maybe three minutes later he’s down again. “I put the bar of soap behind the tree” he explains, and heads to the basement. The next time he passes us, he’s carrying a feather boa (from a Hallowe’en box, doesn’t everyone have one lying around the house?).


Finally, on yet another trip basement-wise, I intercept him – the basement has lots of stuff in it, and someone who can see the decorating potential of a bar of soap clearly has a mind that is rather too open to possibilities. Plus the tree is very small, far too small for the volume of decorations that have made their way up to his room.  “You could,” I tell him, “take the decorations off and start over.” “Start over?” he asks. “Sure,” I say, “take the decorations off, then put them back on again”. And so he happily heads upstairs again to redecorate the tree. And we try to get back to Lord of the Flies.


Once the essay is under control comes a trip to the dollar store to pick up, you guessed it, more decorations. He picks a star for the top of his tree, assorted garlands, more candy canes, and, in a moment of weakness, I let him buy a package of tinsel. His tree becomes a silver fountain as he tosses the entire package at it (no cats in the house at this time).


The next day his sister is finally in the mood to put her tree up. She kindly allows him into the inner sanctum of her room, a thrilling treat for him. He helps her decorate, handing her the delicate glass decorations she chose last year. He offers one of the candy canes from his tree and is thrilled when she accepts. Finally, her tree is done - a masterpiece of restraint and balance, delicate and lovely, and utterly colour-coordinated. His is a masterpiece of chaos, completely overloaded on one side and bare on the other, with a dozen candy canes bending down a single pathetic artificial branch. Her tree is topped with an angel. His tree is topped with a star. Oops. He wants a “snow angel” like Pearce. It’s late, I’m tired, I tell him we’ll get one later. The next morning the first words out of his mouth are “I want to get a snow angel like Pearce” and, in time, he acquires his own angel to top his tree.


And so each night in December my darling children sleep close to their very own trees. My daughter dreams teenage girl dreams, full of angst and indescribable longings, beside a tree that shimmers with mauve and pink and silver and a tasteful touch of tinsel. My son dreams the dreams of a child whose brain is wired differently, confusion and worry mixed with wonder, beside a tree that would groan, if artificial trees could do such a thing, under the weight of all those ornaments. It comes to me that my daughter’s tree is very selective and deliberate – each ornament chosen specifically, to match some unstated but precise criteria and vision. My son’s tree is all-encompassing – no decoration is rejected as inadequate or inappropriate, all are welcome. I resist the urge to “fix” his tree, to balance it out, to remove the less acceptable items (OK, I confess, I took the bar of soap – we needed it). This is a tree that, likes its decorator, teaches and challenges at the same time, with a strange but fascinating beauty all its own.

Thursday, 19 November 2015

Materials for home-based instruction

Back in the day when we ran an in-home ABA program, I had to come up with some creative solutions for materials, some of which I use to this day. Here are a few that others might find useful.

Since I don't have a colour printer or laminator, I often upload electronic files to my local Staples store for printing. They can even print on card stock, which my regular printer can't easily handle. I've lost count of the number of times I've used this, most recently for a token economy system and for colour photos to use when practicing crossing the road safely. 

To avoid wasting paper, I put worksheets inside clear plastic "sheet protectors", then have my son complete them using erasable markers (ones that come off with water: in the olden days I used these to write on overhead project acetates, if anyone remembers those)

Dry erase markers and white boards have to be two of the greatest inventions ever. We have white boards of different sizes all over the house and in the car, along with packets of markers. I use them to give my son a visual reminder of schedules and "to do" items for the day, as well as for impromptu token economy boards, and he has the pleasure of erasing completed items. He also uses white boards himself: I have observed him madly writing out the lyrics to songs he's listening to, or sentences from a "read-along" story or audio book, or dialogue from a computer or video game, then immediately erasing them to start over again. Not sure what that's about, but he seems to enjoy it.

The only things better than dry erase markers are sticky notes. One way I like to use them is when planning a day's activities with my son. We can both write "to do" items on notes, and negotiate together what order they will be done in. I've even experimented with using notes of different colour to distinguish between "must do" and "could do" items, or to represent his choices vs. my choices. Easy to rearrange until we're both satisfied (or both equally dissatisfied) and inexpensive to simply discard.

Transition planning resources

Note that this list was first assembled in 2012. I have attempted to validate that all of the linked resources still exist, but there may be newer documents out there.

Title          
Region
Audience
Pages
Notes
Ontario
General
119
Broad focus, mostly practical, excellent starting point for Ontario parents, funding and services landscape has radically changed since publication, but general information useful. Link is to Toronto/York edition.
U.S.
Parents
25
Includes good list of lifeskills and processes for acquiring them, generic information about vocation and employment
New Brunswick
Educators
51
Logical, practical structure. Introduces person-centered planning.
Ohio
General
108
Focus on ASD. Excellent checklists, very useful structure.
Ontario
Parents
28
Very general, adapted from U.S. source. Suggestions of actions for parents while waiting for services.
Ontario
Educators
46
The Ministry of Education’s beautiful fantasy of what could be achieved through education system focus on transition.
USA
Parents

Despite title, more of a guide than a toolkit. Good information about self-advocacy, nice stories, but not very relevant to Ontario.
Autism Tomorrow: The Complete Guide to Help Your Child Thrive in the Real World
USA
Parents
225
A bit of a grab-bag, some information only applicable in U.S., has a rare section just focusing on girls. Available in print form only.
Ontario
Parents
n/a
Set of online workshops.
Ontario
Individual
28
Unique guide with a focus on the individual.
Ontario
Parents and individuals
n/a
A series of helpful checklists (very high level)
Ontario
Parents and individuals
47
A research paper, would be of interest to those considering post-secondary options.
U.S.
Individuals

U.S. based but lessons apply generally.
U.S.
Parents and Community
68 (also online)
Legal, healthcare and other details are not applicable to Canadians, but much of the content is of general and practical use. Also includes links to guides for employers and community members, which can be valuable.
 

Token economy systems for independence

A simple token economy system has been part of my parenting toolkit for a long time. For my guy,  I've usually implemented this using a small laminated sheet with a series of boxes to fill in or place checkmarks in, and an erasable marker (not dry-erase). Don't have a laminator? See my blog post about useful materials for home-based learning and programs. I target a behaviour (being quiet for x minutes, trying something new, sitting for x minutes, whatever) and then award checkmarks (or filled-in boxes) to my son, with a defined reward (a break, a treat, a favoured activity) when all the spaces have been filled. What I love about these systems is their flexibility (you can arbitrarily give extra marks where necessary to make the experience positive), their clarity and their portability.     

As the years have passed, I've turned to such systems less and less often, finding more natural reinforcements and recognizing my son's maturity and growing flexibility that doesn't require such tools. However, I decided to dust off the old approach when faced with the challenge of encouraging independence. Yes, he does lots of household chores, and is better at following time-based schedules (perhaps he's a little too time-focused: this is a kid who when reminded that he needs to be upstairs at 9:30 will respond "it's 9:29!" - his watch obsession might be a topic for another post), but unprompted daily activities are still not as common as I'd like. So I came up with this, which rewards checkmarks not for doing something, but for doing something without being prompted:
So far it seems to be helping, although I've had to be rather liberal about what the "something" he is doing unprompted might be. Have other practical ideas for promoting independence? I'd love to hear about them. 

"He's beautiful"

"He's beautiful", the stranger said to me. I had already pegged her as a good sort, seeing her kind reaction to the sight of my gangly 21 year old son crouched down to examine the children's DVDs on the bottom shelf at our local Value Village. He was gleefully thrusting "Barbie" DVDs my way, looking for that apparently endlessly entertaining reaction of professed horror they elicit from me. She was not looking askance at him, or me, or moving away uneasily, as people sometimes do. But "beautiful"?

There's no denying that as a child my son was physically beautiful, with masses of platinum curls and sprinkling of freckles on his snub nose, but "beautiful" seems an unlikely adjective for him now that he's fully grown (with jeans that never seem to fit properly, a total indifference to his physical appearance except for the logo on his tshirt, and rather odd facial hair). The woman in the store, however, clearly recognized something about him - and, in fact, as we chatted she told me that she has Asperger's. She talked a bit about the challenges she faces and the supports she receives, and when she again said "he's beautiful" I knew she was acknowledging not just his apparent sweet nature and his enthusiasms that is never diminished by the judgement of others, but the challenges he has faced and the value that should be placed on people like him (and her).

Sunday, 1 November 2015

Look left, look right

In the 16 years since my son was diagnosed with ASD, I have spent many hours in informal and informal settings where I have met other parents. No matter the event or the agenda, almost always there’s the opportunity hear a little about someone else’s experience. People have shared the solutions they have sought out, the situations that bring them joy and, more often, the challenges that bring them grief in their life with a child who is, to paraphrase Margaret Drabble (in “The Pure Gold Baby), “the apple of their eye, and the thorn in their heart”.

On every single one of those occasions, at some point I find myself encountering at least one parent whose concerns seem laughingly minor compared to what my family faces. And I have met at least one parent who faces a situation so profoundly difficult that the concerns I had been overwhelmed with suddenly seem trivial. And whichever way I look, whether I’m looking with jealousy or with compassion, I learn something about myself and the way I perceive and support my beloved son.

From the people who seem to have it so easy, I learn to question whether I’m settling too easily, if I’m failing to push my son enough, failing to set expectations highly enough. From the people who seem to be struggling, I receive a gentle reminder about the importance of occasionally celebrating what is good and strong in my life. In either case, I am forced me to re-calibrate my life, at least the large part of it that’s involved with developmental disabilities, in ways both small and large.

So as you attend yet another committee meeting or parent support group or workshop, I urge you to remember to look left, to those you might envy, and to look right, to those you might pity. Listen, and learn, and remember that wherever you are on the spectrum, there’s always someone beside you.  

(A version of this was originally published in an issue of Autism Ontario's Autism Matters magazine.)