Preparing for adulthood - at age 16

WHAT: Contact Developmental Services Ontario and begin the multi-step process necessary for your child to ever receive funding or access to funded services. I’ll have lots more to say about the DSO process in other posts.

WHY: It won’t be fast, and it won’t be easy, but it’s necessary.

WHAT: Begin serious thoughts about life beyond high school. If your child is in a regular academic program and may be pursuing post-secondary options, explore those options: your school’s guidance staff should be able to help. If your child is not a candidate for post-secondary schooling, see the post on practical transition planning for people who need ongoing supports.

WHY:  This is a long and emotional process for everyone. Of course you should start it before age 16, but better late than never.

WHAT: Talk to your kids’ healthcare providers (doctor, dentist, eye doctor, etc.) to make sure they’ll continue care into adulthood or will refer you to someone else who will. If you will need to change providers (for example, your kid is seen by a pediatrician), plan for this transition by visiting the new healthcare provider, possibly without your kid along, to assess how suitable they will be to caring for your kid. If your own doctor is not accepting new patients, see if they have a policy (as my doctor has) of making an exception for family members of current patients.

WHY: This is an important part of transition planning, and you need to build in time for your kid to meet the new provider and get comfortable with them.

WHAT:  Start submitting income tax for them (even if they don’t have any income).

WHY:  A history of their income is useful when establishing an RDSP, and the RDSP government contributions for an adult are based on their income, not your family income; once they turn 18 they will begin receiving quarterly HST rebates, a small but welcome amount of money.

WHAT:  If you haven't already done so, get your kid a debit card and teach them how to use it. (To be safe, you might want to tie the debit card to an account where funds are limited. In our case, ODSP funds go directly into the chequing portion of our son's bank account, and I transfer funds as necessary into the savings portion for access through the debit card.) And of course check with your bank to be sure you understand any transaction fees for debit.

WHY:  Although understanding money is a vitally important skill, most young people use debit cards for routine purchases, and it's very useful to know how to use one. (In our case, we still require our son to use his saved-up cash for optional purchases like DVDs, and have him use the debit card for groceries and other required purchases.)

WHAT:  Begin to understand Ontario's rules for capacity and decision-making.

WHY:  You need to get used to the idea that in two years when your kid turns 18, they will be considered an adult. Period. I hope to write a post in the future about this issue, from a parental (not legal) perspective.



Also see the pre-age 16 post. 

Preparing for adulthood - before age 16

Starting as soon as you can bear it, but preferably before age 16 (perhaps when your kid enters high school), here are some practical activities you might consider.

Some of these are easy, some of them are hard, most of them will take that precious commodity we call "time". And no, I didn't do them all, but I don't regret the time it took out of my life to do them, just that I didn't do some of them early enough.

WHAT: Give serious thought to who is in your kid’s life. Make as broad a list as possible – your kid’s hair dresser, the guy at the gaming store, that great EA from school, the summer camp helper, a friendly neighbour, volunteers at community programs your kid attends, classmates and team-mates, etc. Make a conscious effort to ensure your kid is in circumstances where that list can grow, whether that be through participating in more extra-curricular activities,  joining a group or club,  joining a church or other religious organization, volunteering in the community, etc.

WHY: Professionals and para professionals can help you develop a circle of support, but they’ll rely in part on your identifying people your kid already engages with. And even if you don’t get help developing such a circle, the people on your list are valuable resources you should be aware of.

WHAT: Make a will, including provisions for a Henson Trust and naming a guardian for your kid, preferably working with a lawyer who has experience in this area.

WHY: Life doesn’t always progress as we think it will. It’s not a fun exercise, but it’s a necessary one. Note that guardianship is a tricky issue for dependent adults.

WHAT: Take a look at your employment situation.

WHY: Depending on the level of support your kid will need and your family, financial, and community resources, you may need some flexibility in your work schedule, particularly during the time of transition from school to life.

WHAT: Get your kid a passport.

WHY: It’s a useful piece of formal identification, especially for those who may not get a driver’s license. Note that for purposes of passports, an “adult” is 16 years old.

WHAT:  Get your kid a SIN.
WHY: It’s needed for the RDSP and/or for submitting taxes and receiving ODSP, if they qualify, when they turn 18. 

WHAT: Consider starting an RDSP.          

WHY:  It’s an important way to help secure your kid’s future. Note that I say “consider” because, in my circumstance, we chose to delay opening the RDSP until my son was close to turning 18: since his income is taken into account for the RDSP rules, that means he is getting the maximum government contribution. Consult an expert to make sure you’re making the decision that’s best for you. It was our experience that opening the RDSP before 18 was somewhat simpler, and the parent(s) can remain on the account once that 18th birthday comes.

WHAT: Start teaching your kid to buy and prepare their own food.

WHY:  If your kid qualifies for ODSP when they turn 18, the ability to buy/prepare food can be used to support the claim that they qualify for the “shelter portion” of the funds (assuming they pay you some form of rent while remaining in the family home), which provides them with more money.  Plus it’s useful for life in general.

WHAT: Track down a copy of Connections:  A Guide to Transition Planning or one of the other documents mentioned in the transition planning resources post of this blog and do some of the things those documents recommend.

WHY:  Information in the Connections book about accessing services is out of date, but the rest of the document is very helpful and timely. Lots of checklists and concrete actions you can take.

WHAT: If it’s been a while since your kid had a psychological assessment, ask the school to have one done.

WHY: A current assessment might be necessary to have them deemed eligible for adult supports, services and funding.   

WHAT: Get a sense of your kid’s abilities outside the academic domain (life skills, employment skills). Some of the transition resources in the transition planning resources post in this blog have checklists, and there’s an entire post about skill assessment tools too.

WHY: As parents it is difficult to recognize what our kid can and can’t do outside the domain of school. Having neutral checklists can make the task easier

WHAT: Begin giving your child as much responsibility as possible, including participating in all sorts of decision making that relate to their life (what kind of sandwich to eat for lunch, which shirt to buy, the order in which chores are to be done).

WHY: Particularly for those of us who parent a kid with numerous challenges, it is all too easy to fall into the trap of expediency, doing things for them, making decisions for them that seem routine and harmless. However, it’s difficult to promote independence in someone who hasn’t been given the opportunity to make decisions, and live with the consequences.

WHAT: Help your child become more money-aware. Pay them for household chores or, if you disagree with this approach, find some other way for them to earn money. Set some basic rules for funds received vas gifts: a portion to savings, a portion to savings (and a portion for charity, if you’re so inclined).  Look for opportunities for them to save money for a desired object or item.  As a bonus, if my experience is anything to go by, nothing teaches math skills like a strong desire to buy something for which one has to save.

WHY: The ability to handle money is critical to independence. As with decision-making, we sometimes fail to allow our kids control over their own funds, even if that means they learn some hard lessons: better those lessons are learned young, when there are lots of supports in place.

WHAT: Figure out a way to judge the amount of support your kid needs (1:1, 1:3, 1:5, 1:7, 1:12, etc.). If you can find a way to test this, through community programs, do so.

WHY: The less support they need, the more (and less expensive) the programs available to them as an adult. It’s better to be aware of the challenges now than to be surprised later. Also, this information will be used to match up your kid with funded programs. (To be explained in later articles about the DSO.)

WHAT: Apply for the Disability Tax Credit.

WHY: Even if you feel that as a parent you don’t need or want this credit, it’s a precondition for your kid applying for an RDSP and, once they turn 18 but remain a dependent, allows you to take advantage of ongoing tax credits. Warning: I have no legal or financial experience or training and, by some standards, am pretty much innumerate. Consult a professional.

WHAT: If you live in Toronto, acquire the TTC Support Person Card.

WHY: It allows you or another adult to travel free with your kid. This is, among other things, enormously helpful for TTC training purposes.

WHAT: Review the recreation and other activities, including Parks and Recreation, your kid participates to see if they have any age cutoffs/restrictions and, if necessary, seek out alternatives that will span the teen and adult years.
WHY: In my view, the only secret to successful transitions is to change things a little at a time. The more things you can keep the same after 18 (even if they have to change at age 21), the easier it will be for your kid. 

NOTE: You will notice that “talk to your school about transition planning” is not on this list, although legally your kids’ IEP has to have a “transition planning” page on it once they turn 14. In my experience, schools have enough trouble educating our kids appropriately and although in a perfect world they would have much to contribute to the transition process, that’s not a world I’ve ever visited, let alone lived in.

Skill assessment resources

Skills Inventory 

The Ontario government offers two useful resources:

• Essential skills, which gives a list of skills the authors feel are needed for success in “work, learning and life” 
• Work habits, which gives a list of skills needed for any kind of work (or, by extension, volunteer job)

TTAP (TEACCH Transition Assessment Profile), Gary Mesibov, John B. Thomas, S. Michael Chapman, Eric Schopler 

This expensive ($94) volume, also available from the Geneva Centre library, is a professional resource, but an extremely valuable one. It is intended to be a tool used to assess “current and potential skills in those areas most important for successful, semi-independent functioning in the home and the community”. This is a formalized measurement instrument meant to be administered, in part, by trained professionals (including teachers). To do the formalized measurement, you need to use the specific test measurement tools (included with the book) but just the list of items (e.g. “smiles appropriately”) and the description of the scoring (“passing”, “emerging”, or “failing”) should be very useful to parents as well, even if this just use their judgement to assign an informal score. Of course, the book doesn’t tell you how to get from to a “passing” score, but it does help you figure out what items need work and how to take those scores and turn them to goals. The document outlines 216 items in six functional areas: vocational skills, vocational behaviours, independent functioning (self-help), leisure skills, functional communication, and interpersonal behaviour.

The Assessment of Functional Living Skills (AFLS) by James Partington, Michael Mueller 

This is a set of assessment tools from the people who brought you the ABLLS It’s being published in a series of documents (basic living skills, community participation skills and home life skills). To be candid, I don’t think these contain anything that a little common sense and time wouldn’t tell you but in the absence of the time to undertake this, you might consider purchasing these documents.

FISH: Functional Independence Skills Handbook, Assessment and Curriculum for Individuals with Developmental Disabilities (10900)

 Note these are functional skills, not life skills, and include things like cognitive abilities, socialization, and speech.

CALS - Checklist of Adaptive Living Skills 

LINKS

A curriculum for “assessment and instruction to promote student independence in natural environments”

PAES (Practical Assessment Exploration System) 

 A U.S. company (“Talent Assessment Inc.”) has developed a “work development transition curriculum”. I saw this at Calgary’s Ability Hub and thought it was an excellent resource that I’d love to see here in Toronto. Anyone have $20,000 to spare?

Tasks Galore/Tasks Galore for the Real World (Laurie Eckenrode, Pat Fennell, Kathy Hearsey) 

These books contain brief but clear overviews of using visual structure to help people with an ASD perform tasks independently and accurately. The bulk of each book is made up of colour images of visually-structured task/work environments that can act as inspiration. “Tasks Galore” deals primarily with pre-work skills such as fine motor, language, math, reasoning, etc. “Tasks Galore for the Real World” focuses on specific vocational (and life) skills. Both books cost about $50 but are also available for loan from the Geneva Centre library. I feel these are books that would help parents set up home-based tasks that will develop their child’s independence and skills, and would help employers design work environments that increase the success of those with ASD.

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.