The Many Hidden Steps

Hard at work with her aunt and then-facilitator Sowmya

In most bookstores, there is almost always at least one section of books that claim to help you acquire any skill in 10 steps. From peeling an orange to becoming a concert pianist, it’s all there. I’ve never really read any of them, but having watched Damini painstakingly build on her stockpile of skills, I think they should read more like “100 – 1000 Steps to Mastering  anything ”.

So much of our learning is invisible to us. Take for instance, learning to copy something from the black board. Its not an educational target, just a means to it. I don’t know if anyone quite remembers how he or she learnt to do it. And it wouldn’t count among the noteworthy accomplishments in our lives, it certainly doesn’t in mine. but not for Damini. For her, it became a learning target.

Facilitating Damini’s learning of this seemingly simple process however completely changed my perception of it. This is what the process looks like completely deconstructed:

·       I need to observe the teacher when she is writing something on the board.

·       What she is writing is connected to what she has been talking about.

·       Words are not randomly written. There is a pattern.

·       I have to start with the first word on the top left, move right along the row until it ends. Then I move down to the next line below and do the same for each row thereafter until I reach the last word at the bottom right.

·       I need to copy the first word on the top left corner of my book, and then look back at the board for the second word. Now I need to have marked my space while I looked down or I could lose track and write the wrong ‘next word’. [There are any numbers of opportunities for this to happen]

·       When I copy the second word down, I need to put it next to the first one and not anywhere else.

·       The space between two words needs to be copied down as well.

·       Then there are punctuation marks that make no sense at the moment and are easily ignorable.

·       There are margins to contend with.

Wow! Who would have thought we had accomplished something so complicated? All I remember of it is Aunty Diana, my kindergarten teacher, telling us to write down what was on the board, and all of us doing just that. 

It took Damini a good year before she was able to do this independently.

Watching her learning process is like watching a movie frame by frame. And even after she has achieved some mastery over the task, it may be a while before she understands the objective of it all.

We would play hide and seek every day when she was younger and through this she got the hang of counting and looking for people. When it came to the hiding part though, it took her a while to grasp the concept of remaining hidden in order to win, and that winning was the objective in the first place. She would instead hide and promptly yell, “I am here!”

Over the years, I’ve discovered that these three rules really help me to facilitate her learning:

1.     Several steps: break the task down to all the elements that need to be mastered. Make explicit all the hidden steps.And they are there! Make visible and focus on each and everyone of them.

2.     Give it time: be prepared for a long learning curve. It took Damini 6 years to get a decent grasp of time. Can’t say she’s mastered it just yet.

3.     Give it a rest: introduce a skill, give it a bit of practice and then let it breathe for a while.

We got Damini her first bicycle when she was 7 years old. She would push with her feet to move around rather than pedal. Her grandfather was charged with the task of getting her to pedal and at the end of two months she did pedal… backwards. We tried everything from pushing the pedal to physically moving her feet forward. It was really frustrating as you can imagine! Then she had a break from all the torture when went on a holiday shortly after. When we came back, lo and behold! She was pedaling forward. Something had fallen into place when we stopped forcing it on her. Ever since, we have made this a part of the facilitation. We wait for her brain to absorb and make sense of everything.

Invariably the “Eureka!” always happens.

Family, Friends, and Playmates

Damini has just gotten back after a 3-day outing with her favorite aunt, uncle and cousins. As you can see from the pictures she had a blast.

Sixteen years have taught us the absolute necessity of co-opting as many people as possible into the process of rearing a differently abled person: family, friends, neighbours.

People with Down syndrome have an extra serving of sociability. They are by and large very affectionate, cheerful and easy to get along with.  Yet they somehow find it difficult to sustain interaction with their peer group. They do not possess the mental parity that enables one to chat, hang out, or kid around with people of their own age. I’ve helplessly watched Damini hang around on the fringes of a group, unable to overcome a social isolation that was more often than not self-imposed. As far as the other kids are concerned, they are the recipients of a benevolence that is atypical to a regular friendship. But there’s only so much mediation that can happen to facilitate socialization before it becomes completely contrived, thereby defeating its very purpose.

Of course we started off adamantly determined to make sure that Damini would have friends closer to her age. She went to a regular school until last year and it seemed to work initially. When kids are really young, interactions are simple and involve a lot of play and physical activity, so she fit right it. The gap started showing as she got older and her peers moved on to more cerebral interaction and complex forms of activity. As the years went by it became more pronounced.

 The effort to mainstream her education wasn’t completely futile. It gave Damini a lot of exposure to the ways of the average children of her age. They helped her get used to being in large groups and develop ways of dealing and interacting without being overwhelmed.

Even so, where is the outlet for her to express all that extra affection she has for the world? How does she build relationships that are independent of us? Of all the challenges I’ve faced this has been the most agonizing. You want your kid to have friends.

Something that helped, and we did it more for our convenience than anything else, was leaving her in the care of various trustworthy [and risk taking!] people regularly. It could be from anywhere between 10 minutes and 3 weeks, for anything from errands, to work…to a holiday [when desperate for a break].  With the common denominators being respect, affection and kindness, Damini has been exposed to diverse lifestyles, interactions, age groups, activities, entertainment, and ideas of discipline.

Our neighbor Vidya and her family would keep her when I had errands to run. Her son was Damini’s first crush.

Vijayta her sister [not always willingly] and her friends would babysit her. She would tag along with them wherever they went. Knowing how much she liked birthday parties, she was invited to all of theirs.

Grandparents, uncles and aunts have been imposed upon with impunity when we needed a longer break.  This meant having to deal with a more traditional approach to child rearing. It also meant bargaining and fighting for television time with her grandfather, which worked out because she found someone to squabble with.

My cousins and their really sporting spouses have actually left their homes to live in mine so as to be with her while we travelled.

Friends have been more than accommodating a number of evenings when we felt like a movies sans Damini. [Priya, Dushyant, Lakshmi and Arcot are some of her favourite people].

All these people have become her social group. These are people with whom she has forged relationships that are independent of us. In her cousins, who are at least 5 years younger than she is, she has found friends. She plans sleepovers with them. When she feels like it, she calls my brother and his wife [Rajesh and Bharti] and makes plans to visit them.

My cousin’s husband Keerthi is her closest buddy. Any family gathering will find her attached to 
his side. She calls her grandparents almost every day to discuss menus for the day. Das, of course, is her play buddy. They go cycling, and play football and hockey together.

My learning from all this:

-       People take their cues from us. If we treat her with respect in social situations, others do too. If we are confident that they can care take care of our kid, they feed off that confidence and trust. Of course we always give detailed written instructions, what we affectionately call ‘the Damini operation manual’. It contains schedules, medications, emergency numbers, do’s and don’ts. For a while there was a ready copy lying in my desk.

-       One cannot be very fastidious about how others take care of her. Given that she is treated with respect and affection and common sense, we just have to trust the other person’s ability and allow for certain latitude in child rearing practices. If anything, this builds flexibility.

-       We have to make peace with the idea that Damini may never have friends of her exact age. They will always be much younger to her or older than her. The most important question is, are her basic social needs addressed? The answer will have to be a definite yes. From 76-year-old Ram Mohan Rao to 5-year-old Aryan, she has people to do various things with.

-       There will be occasions where she will be just a spectator, wanting to be a part of the action but unable to. One has to learn to live with that.

One thing I give thanks to whenever I think of it is that we belong to a big happy-go-lucky Indian family in a happy-go-lucky society. That in itself has made it infinitely easier.

Routine, Rituals and Reassurance

Mondays usually start out with a low grade sense of urgency that characterizes the average school day:

“Get off your bicycle and change!”

“Where’s the hair brush?”

“You can’t have more breakfast because you don’t have the time!”

“Is lunch packed?”

Midway through this mad rush a couple of weeks ago, I happened to look at Damini’s school diary and saw that she had study leave for two days! You would think that she would leap with joy at this unexpected reprieve. Instead we had a protest.

Predictability is Damini’s security blanket in dealing with life as dictated by people with the usual 46 chromosomes. It manifests itself in three ways: routine, rituals and constant reassurance.

You won’t find Damini complaining about drudgery. She loves her daily routine which is more or less: wake up [always around 6.00 a.m.], hug and kiss her humans and dogs, cycle with head phones on, eat fruit, cycle some more or play the drums, change for school, take her daily supplements, brush her hair, eat breakfast, brush teeth, go to school, return, have a snack and daily supplements, cycle around the yard, go out cycling with Das followed by a game of hockey or football, hang around a bit doing nothing much, bathe and change, eat dinner, watch a movie, have supplements, brush teeth , off to bed.

Naturally, sudden, unannounced changes are mostly unwelcome, unless it is a treat, like a movie or eating out. Switching things around even a little bit, say, have breakfast and then change or bathe after dinner almost never works.

The same goes for the weekly routine. She is yet to get her head around a routine on the scale of a month or a year [aside from her birthday of course]. God help us when she does. So vacations therefore find Damini at bit of a loss.

We all have some ritualistic indulgence or the other. But no one revels in them as much as Damini does in hers. It manifests in a manner of ways:

When she leaves to go to school, it’s important that I say “Do good work”.

Every Saturday morning, she goes to a local restaurant to buy breakfast for all of us. The name of the weekly event is “Two Plates” [I don’t even remember how it came to be named as such]. What’s more, she buys herself the same breakfast of idli vada every single time, and has done so for the last 4 years.

Just before bathing, she has to act out a sequence of hide and seek with her father.

She turns the bed down precisely in the same way every night before she goes to sleep.

She calls her grandparents every day and asks them what the day’s menu consists of.

Specific people are greeted in particular ways: our neighbor Eddy for instance, instead of a typical “Hi, hello” is hailed with “idli vada”.

When we visit certain friends, she expects to get the same meal she ate there the last time, and she takes along the same set of movies she watched there previously.

When Vijayta is in town, we have to play ‘Oranges and Lemons’, ‘Teesket and Tasket’, and Hide and Seek…all in that order and with all the lights in the house turned off.

It’s a fairly long, cumulative list. Some of these rituals go way back to when she was 5 years old.

Damini seeks constant reassurance that things will remain the same every day by reiterating to me the sequence of events for the next day. She also needs to know exactly what the menu for the next day is [this leaves me with no choice but to plan ahead]. If any activity or holiday is planned with her knowledge, she asks me at least ten times a day if it’s still on the agenda. For instance, we will all be going to Boston for Vijayta’s graduation in May. I am asked “are we going to Boston in May?” on an hourly basis. The current obsession is- if the school will reopen on the 11th.

This obsession with routine has its advantages: we have managed to integrate many habits into it that are ultimately advantageous. Damini isn’t very fond of fruit, but a year ago we started keeping a bowl of oranges for her on the table in the mornings. It would be consumed, after some protest of course. It was almost always oranges. A couple of weeks down the line, I forgot to keep any for her and she came up to me and asked me for fruit. It had become a part of the routine. We then started varying the fruit we gave her. She would eat it even if the fruit wasn’t something she liked much. The compulsion to adhere to the routine was stronger than her dislike for Papayas.

Weekends invariably find Damini a little aimless and lost. I started setting out some work for her to do, usually some kind of a puzzle. Now she does it voluntarily. Of course, before she starts, she chooses from a pack of playing cards the 2, 4 and 7 of clubs and sets them out in front of her.

I would give anything for some kind of an explanation.

Nothing Simple About Football

Damini runs a race at Sports Day

As recently a year ago, Damini went to a regular school. She was the only child with special needs in her class, and I would accompany her in case there was ever need for facilitation between her and the proceedings of the school day. Most of the time, I would end up watching the class in progress from the sidelines, my services not needed.  

Out of all her classes, games period was especially interesting.

Nowhere else do gender biases manifest more starkly than on the playing field: after the initial warm up, the boys would head straight for the football field as it if were their birthright. The girls grabbed various other kinds of spheres – handballs, basketballs, etc. There was usually a tentative bunch that looked like they wanted to challenge the boys for the football, but would ultimately end up taking a spare and playing their own docile version of the game.

Damini, however, would automatically join the boys. She would start with enthusiasm, running along with every one.  But after she got a couple of chances to kick the ball, she would hang back and slowly withdraw completely from the field to one of the benches on the sides. I would be there to coax/urge/bully her back into the game. A lot of the time she just put her foot down and said, “I finished”.

Throughout the various activities that account for physical education, there would be at least 4 or 5 other kids who, like Damini, seemed to cling to the sidelines, looking like they would rather be elsewhere.

On the surface, there seemed to be no difference between the involvement, or lack thereof, of the other kids in the activities from Damini’s. Yet there was a difference.

When the boys chose to play football, it was because they “liked football”. When Damini did so, it could have been for any of the following reasons:

The ‘boys’ were playing the game.

She had played the game the previous week, so she automatically assumed that she had no other choice.

She knew I would push her into playing something regardless.

She didn’t know how to assert herself and say “I do not want to play any of these games.”

She liked football.

Sack Races at Sports Day

The other kids knew the basic objective of the game: to score a goal.

For Damini it was all about the act of kicking the ball and saying “yesss”. For everyone else, gaining control of the ball and moving it towards the opposing goal post was an easy fact to grasp. Damini would wait for the ball to come to her, and if it had even a little momentum behind it, she would duck in self-preservation. The direction of the kick was completely inconsequential.

The difference between Damini and her peers was especially stark where the concept of being a team member was concerned. At its most superficial level, this involves being able to identify the others in on one’s team. At a fundamental level is the notion of one group of people pitted against another in competitive spirit. This concept completely eluded Damini,  so while everyone was running together after the ball, working in tandem to keep the it within the team’s possession – passing it to the right people, protecting it from the ‘enemy’, getting it to the goal – she just ran along with the general crowd.

When the other kids chose not to play, it was a matter of lack of interest, ability and/or stamina. But it was a decision based in comprehension. When Damini withdrew from the game, it was because it required her to grapple with too many concepts and people at any given moment. She was in way over her head.

           

However, she loved track and field activities. They were repetitive with just one idea involved [run or jump], and only herself to contend with. Best of all, she got cheered on at the end!

Happy To Be Born

On the First of January this year, I was rudely awoken from my really, really short date with my pillow by a very excited Damini:

“Amma…what is it?”

“What is what?”

“It is January!” [Duh!]

“Okay” [Can I sleep?]

“Next is February!”

“…Right”

“And then March, April, May, June, July and……”

“…and what?”

“AUGUST… it’s my birthday!”

She had figured out that it was “next year”, which meant that she was finally allowed to start the count down to her birthday, which is on the 12^th of August.

Damini lives from one birthday to the next: no sooner is one birthday over than she has already started planning for the next one. This is an intense process as it involves the guest list, the menu, the type of cake, and the presents.

She usually likes to repeat the previous birthday’s agenda. Lately however, she has begun to lift ideas from other peoples’ parties.

For instance, her sister’s friends painted the wall of her study for her 18^th birthday. This really caught Damini’s fancy and she decided that for her next birthday, her school friends would paint her room too.  This was 3 years ago. Three parties later, the ceiling is the only blank surface remaining.

There is now an anticipation of  the presents: anything she likes and is denied by her parents is put on the wish list. There are a few items in there that have been hanging around for a while: a guitar and a mike [to add to the drums given to her a couple of years ago], and a couple of movies we do not think is suitable for her to watch, but most of her demands are otherwise reasonable.

As for the food, the table has to be groaning with it. Left to her it would probably resemble a wedding feast!

The concept of birthday has slowly evolved over the last 15 years.

The first 3 years was pretty much us parents celebrating for ourselves. Most of the guests were our friends and their kids. Damini had no conception of what was going on, and I’m sure no memories of it either.

Then came pre-school and along with it a flurry of birthday parties to attend. And there is a sequence of events associated with these parties…

§  You wear party clothes and carry a gift

§  Wish the birthday boy or girl

§  Then there are games to be played, organized or not

§  The ceremonious cake cutting and the singing and the blowing of the candles

§  Food! The most popular elements always being the cake and the chips.

§  Grab your return gifts [a really unnecessary practice] and go back home.

Damini managed to grasp the formula over the next 5 years and realized that her birthday was when she got to cut the cake and get gifts. She began understand and enjoy the fact that she was the most important person on that day. Other than the cake and chips, the food didn’t get much attention. She simply could not understand games and would either watch from the sidelines or would do her own thing.

But we took her to every party barring illness, simply because we wanted her to have as much exposure to big social situations as possible. As well as the opportunity to watch kids interact in groups.

Damini started looking forward to her birthdays along when she realized that they were a recurring event. However, the distinction between when it was her birthday and when she was at someone else’s was still unclear. As a result, she expected to be sung to and cut the cake at every birthday party she attended. Some people were okay with that [mainly adults] and some were not. These are also instances when other kids would think her strange for not understanding something so elemental.

It took her a couple of years, but she finally learnt to distinguish between her birthday and the others, that when she was called for a party, that day belonged to someone else. However her conception of time had not evolved to the extent of understanding that a year lies between one celebration and the next. She couldn’t understand why we could not simply celebrate her birthday whenever she felt like it. Our reiterations that her birthday was on august 12^th didn’t really help much.

“My birthday is on august 12^th“

It took another year before the calendar began making sense to Damini. We would constantly list off all the months between one August and the next to give her an idea of a year. She learnt all the months easily enough but thought they could be manipulated or completely dispensed with altogether. Whenever she got impatient with time she would say something like “OK, enough January”, or whichever unfortunate month it happened to be.

The way we ultimately taught her how to comprehend the months of the year was stumbled across quite by accident. We began populating the year with birthdays of everyone she knew and liked, starting with our (myself and her father’s) birthdays, her sister’s and the pet’s. They became the landmarks to cross before her next big day. So she would count her father’s birthday in October, her mothers in November, her sister’s in March, Frodo [the dog] in July and then…her birthday in August.

When we found this working, we started adding other birthdays to the list. That was not too difficult given the size of our clan and our circle of friends. This is an activity that Damini really looks forward to. Now, she asks people for their birthdates and adds them to the list. And she does not forget a single one.

The concept of the birthday allowed her to grasp the idea of time.

The only little bit that remains to be fit in is the original idea behind the birthday…that of coming into existence.

I guess we will find a way to that too.