Page 1 of 9 17th November, 2008

Period 37

By Hira Manzoor, Rushna Shahid & Mehreen Raashid

Circulation restricted to Program Volunteers to respect Zain’s privacy

Zain’s Volunteers!
Melanie, Mary Ann, Saniya, Aveen,
Maheen, Rushna, Fatima, Hira, Hafsa
Page 2 of 9 17th November, 2008
Period 37

Life is settling back into a post summer’s hindrance in her reactions towards Zain’s
pattern. There are of course ups and downs, but actions. A main motivation was roaming around
all is well since the routine is back on track and but since her legs were hurting it was a little
Zain has his playmates visiting him more often. difficult. Still there was this one session in
Things have been going pretty well with which, despite being slow, Zain managed to
everyone. remain ‘present minded’.
Hafsa’s sessions have been fun and interesting. Maheen had one session which was good because
She has learned how to deal with tantrums; the it wasn’t boring. others have been kind of sleepy.
frequency of their occurrence was helped her to It was quite daunting when once Zain
get used to them. It was a doctrine of necessity. tantrummed for an hour in a morning session. In
Sessions that are slow are the most problematic one of the sessions he was neither interactive
for her because then she gets very sleepy. So nor tantrumming but the session was simply very
finding a way to keep herself engaged is her pleasant. So yes! We have our days. Maheen too
present challenge. has been trying not to phase out during her
For Mary Ann there has been a mixed basket of sessions. The tables are turned when you
sessions. In one of the sessions she got upset become exclusive in your sessions and just might
when Zain bit her; she wasn’t prepared for it. So miss a couple of opportunities to celebrate!
that was a challenge there… Using toothbrushes has also been high on
For Melanie there has been a lot tantrumming Maheen’s agenda lately…
due to different reasons: computer, bathroom Fatima has had fewer sessions so she felt a
etc. He also has been roaming around a lot both little out of touch. A positive development
outside and inside the house. But Melanie is fine however was the observation that she has been
with that, she
can handle it.
Even the
tantrumming
isn’t much of an The Winnie the
issue for her
Pooh, make a wish
personally;
patience and on a star song was
persistence are another fun
the pearls of motivation:
wisdom here! At
times explaining
things to Zain Flap like a bird,
helps; other Jump like a fish,
times she just
lets him be.
Stand up, sit down,
Safina too was Wish! Wish! Wish!
slow so it proved
to be a great
Page 3 of 9
Period 37
picking up a lot of cues from Zain. One of the
sessions was rather nice because she went in a
slow mood expecting a boring session but they
managed to match levels and it was fun! Fatima
just feels wanted and loved when Zain wants to
hold her hand; its quite a reward to look
forward to.
Saniya has recently joined the group so our
warmest welcome wishes for her! She has had
about three sessions so far. One of the sessions
was very overwhelming because Zain was
tantrumming. Quite alright! We have all been
there, done that (myself being the sole
exception). A lot of what she has been doing is
simply joining because she doesn’t know Zain
very well, yet. But it seems promising! This once
Zain had her make nawalaz for him while he ate;
always a good sign!
Mehreen observed that there is always a cycle in
the induction of a new playmate for both Minaa
and Zain with initially there being low eye
contact, low level of interaction and as the
playmate and the child get to know each other
things start progressing. There are of course
different challenges for different people. The
question that comes to mind is ‘does this hamper
the program goals?’. The simple answer is ‘no!’. In
real life you meet new people where initially they
are
strangers
and as you
get to know
them you
become
comfortable
with them
and they
become your
friends. This
is a way to
hone Zain’s
social skills
Toy cars that Zain enjoys
slowly and disassembling
softly in a
controlled environment. A new volunteer is
17th November, 2008
always a challenge for Zain too; it’s simply a
lesson in ‘life’.
Zain has got a trampoline of his own now, but
unfortunately he doesn’t like it much. This was
unexpected for he just loved Minaa’s trampoline.
Perhaps it is a universal rule after all ‘siblings’
stuff Is generally more attractive then your
own!’.
Recently we have been discussing many of
the phases that Minaa went through a couple of
years ago. Covering her ears is a case in point. It
is something that Zain does a lot as well.
Saniya has been experiencing the first of every
thing with Zain. The very first thing she did was
to roam for a good 45 minutes. This is something
Zain does with all his newly inducted playmates!
Its like Zain is ragging you, testing your limits
=)… Mehreen calls it ‘breaking in a new
volunteer!’. However from Zain’s perspective, it
is always challenging to have a new face in the
arena, so perhaps this is his way of avoiding eye
contact. But one thing is undeniable, all the while
he is doing this, he has the most adorable
naughty expression!
Melanie observed that Zain seemed a bit scared
going through the garage once… there must have
been something different there. But then she
took his hand and every thing was fine there
after. Breaking cars is
another typical
disassembling boy sport
that Zain has been indulging
in lately. Also this once
while tantruming, when
being ignored, Zain took
down his shorts to muster a
reaction! Well it does sound
like an effective ploy…
Recently EB also received
quite an out of the blue slap
from Zain while he was
helping him down the stairs!
A pertinent question that
Maheen posed during the
meeting was whether you celebrate a
Page 4 of 9 17th November, 2008
Period 37
communicative ‘No!’. Well we know that he knows
how to say ‘no’. in this case we should respond to
his communication but at the same time it would
be a good idea if we let Zain know that he can
use some other word like ‘stop’ next time.
In another session with Maheen Zain did a
fascinating thing with blocks with 6s and 8s on
them. He placed them on his legs portraying
mirror images of each other. Also it seems to
her that Zain is being more talkative lately; or
perhaps its just that Maheen is making out more
of what he is actually saying.
The programme goals is one section that Hafsa
finds rather hard while Maheen on the other  
hand actually likes it! She believes its very
Zain enjoying pakoras
organized. Hafsa on the other hand finds it
daunting to fit things into definitions. Regularity
on his birthday!
works here… from that perspective you get
familiarised with it and into it with time. In this
Among Zain’s motivations, interestingly enough,
section language has been focused the most;
eating topped the charts. He is enjoying eating
Mehreen is very, very pleased with this
these nice little, round balls of fish now and
development. Toothbrushes are, however, at a
thankfully enough there have been no problems
definite low! But that’s ok… we will get there,
with the diet. Bed is another huge motivation
eventually. Personal facilitating goals too had
and jumping never fails to motivate him. In fact
some rather good ones such as ‘having fun’,
‘observing’ and ‘being user-friendly’.
it has been a dominant motivation over time.
Interestingly enough joining and requesting are
Whispering is a fascinating new motivation!
at the same level. Non-verbal communication was
rather low so that is one area that needs some
work.

OUR SPECIAL THANKS TO SAFINA

…for taking out the time to be with Zain through

exams, holidays, projects, interviews over the last one
year. We really appreciate it and wish you all the best
in whatever you do and wherever you go. Zain and all
of us will always remember you!
Page 5 of 9 17th November, 2008
Period 37

I found it difficult to join especially when Zain was very exclusive and did not
let me join. What to do in such a situation? This is quite a common issue and does
tend to be confusing at times. A very easy technique was shared by Fatima. It is the art
of ‘joining in your mind’, pretty much like being in a fantasy world. Create entire sets of
conversations with him. It sounds bizarre, but she has found it to be effective. So simply
create your own ism similar to his. Keep yourself motivated. Wait for it to pass. Give him
space. This is definitely NOT a time to build. No talking, no joining physically, no sitting
next to him… sit on the bed instead and wait for it to pass. Consciously not getting bored
is quite a challenge for us, just like in a boring class! The very idea, Mehreen confesses,
would have been quite hard to swallow a year ago. But now it’s ok. In one of Mehreen’s
sessions when Zain was being very exclusive, she just gave him his space. It is alright, he
just had something on his mind, needed his time… . He would not let her sit down next to
him let alone join or talk. 20-25 minutes later Zain was all smiles! Mary Ann too agrees.
She suggests that we give him his space, respect what he wants, things we would normally
do for anyone else.

I was wondering if we should give Zain more time to get off the computer like
15-30 minutes. I think he got upset because it was a little abrupt. The thing is that
these days, fresh up in the morn, Zain having a natural progression in his mind, a routine
that he likes. He takes a bath and sits in front of the computer and ‘bang’, there goes the
light! So the bad mood is understandable. In one morning session Maheen turned off the
computer and Zain started tantrumming. She simply said ‘oh that is such a fake tantrum!’,
and voila, he stopped :D We do have a countdown from 1 - 30 after which we shut the
computer… there is a similar routine for sleep time as well and along the way he just
might learn to count as well. Zain’s tantrums are still more manageable. Now Minaa is in a
whole new league altogether. Fatima say’s she is willing to take Zain’s biting, punching,
kicking any time of the day rather than the monstrous tantrums Minaa throws! To put
every thing in context, Zain perhaps tantrums because of the unpredictability of the
situation and the computer is just a side issue and it his way communicating that he wants
his computer.

How to respond to verbal isms? Just respond to whatever he says. Join. Make a
sound, any sound! Celebrate what he has said. Distinguishing a verbal ism is tricky as well.
Repetitive sounds that Zain may be making while being exclusive in the process are verbal
isms. It is simply the verbal counterpart of the physical ism e.g. a frequent series of
sound like ‘whooa whoa whoa…’. Every passing day we are becoming more sensitive and
tuned to what he is saying. Perhaps then we would know the difference. Sometimes our
Page 6 of 9 17th November, 2008
Period 37
mind is tuned to not expecting it and we tend to miss out on conscious words. So let’s aim
at being more observant, focused, sensitized…

He seemed itchy and scratchy? It could be sensory. Children with autism do

have itching issues. Zain somehow feels warmer then normal people. It could be related
to the electricity. Recently there has been this ant problem in the house as well. These
tiny, microscopic ones that bite one too…

He keeps opening the fridge again and again and then he would run away.
Persistently requesting works… e.g. please close the door of the fridge… keep asking, 6-7
times, it would eventually persistence pay!

How to respond to the sounds he makes. Today he said “wachee” a number of

times and it was clear but I didn't know a word to match with it. Maheen starts by
copying the sound and then making a song out of it. Fatima starts laughing by matching his
pitch… These are good responses. BUT the issue here is that we need to offer coherent
word substitutes for Zain’s random sounds. Matching the sound with the word is not
important at this point in time and neither is matching the sound with his recorded
vocabulary. That will come in time. ‘innue’ could be anything under the sun! it could be a
star, a pillow, a box… Melanie would say ‘I know’ as a response. Mary Ann substituted the
‘I love you!’ for it. The fun part is you could make anything up. Mehreen also suggested
that it would help if all the volunteers could listen to the webinar on language again.

Could we keep wet wipes in the room? They are already there! In the white and
pink box, the one Melanie showed us.

What to do when he wants to take food into the bathroom? This is definitely
a catch 22! It’s a challenge if you keep the door open, and a challenge if you don’t. but we
decided that the first option is better. Mary Ann gave him a choice to choose between
food and shower. He listened! So explaining is a tool you might want to employ more often.
Mehreen shared with everone that a decision has been reached regarding diapers coming
off during the night as well. The first time they came off during the day… it was an
absolute nightmare! But we survived. There are tough days ahead so if we see dark
circles under Mehreen's, Melanie's and Mary Ann’s eyes…be understanding.

What if he wants to drink tap water? Give him regular water. If there is
something that you think is dangerous, call someone. Explain it to him. The thing is that
Zain has tap water any way, while taking a shower, he licks it up. He ate mud this once
too! You could hold his nose, or ask him to take it out there are different ways. He did
know that it was wrong, so when Hafsa snatched away a piece of foam Zain was bent on
devouring, he was actually ok with it.
Page 7 of 9 17th November, 2008
Period 37

Zain has always loved water…!

Is it ok if the whole session is in the bathroom? There is no harm in it. If you
can deal with it, then it’s okay. With Mary Ann he wanted very warm water, while with
Melanie he insisted upon having cold water! Volunteers used to have a change of clothes
here all the time. Since the winters are here, he probably won’t want a shower that often.
That would be an issue that will re-emerge in spring. Mehreen’s take on the ‘to lock or not
to lock’ issue is that Zain deserves to exercise that liberty to go to the bathroom on his
own. How would we feel if we wanted to go but the door was locked? But a slippery
bathroom to play in is a challenging issue. So while she would prefer to leave the
bathroom door open but if he has done his shooshoo the door could be locked as well.

What to do when he is extremely exclusive and overwhelming because of his

tantrums? Give him space but be there for him – don’t go out of the room to use your
cell phone. As for one’s own reaction, well that is something you figure out in due time.
Since Saniya is new, this is one of the major challenges in her books. Hira believes
listening to hard rock might help =). Or else you could always listen to Minaa’s tantrums!
Rafia reacted to Minaa when she tantrumed with Rafia for the first time after a good 6
months into the sessions. Minaa picked up on that reaction and actually made an activity
out of it that she associates just with Rafia. So then, inevitably Rafia’s sessions would
start with screaming. Minaa actually dubbed it ‘screaming time!’
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Period 37

We need to eat something before the session otherwise Zain's food can look
very tempting. The queema is excellent! Yes we should do that! :D when the light
went out in one of her sessions, Fatima actually sneaked a bite when Zain wasn't looking…
she was so scared Zain would find out that she actually gobbled it up in her haste! The
fridge is always stocked up, so help your self. Mehreen could actually offer you queema
too if you like!

Do we need to talk a lot? It depends on Zain. At times he doesn’t like noise, so

mellow it up a bit; at other times he is actually quite hyper, so this is an opportunity to
communicate in every possible way.

How to avoid getting bored? It is a state of mind, just like having fun is a state
of mind. Be present! Change it, consciously engage and enjoy! In time it becomes second
nature. Understand him better, that always smoothes the way. Every one has had slow
sessions… Maheen is a firm believer of self-motivation! Now what could possibly be
fascinating about roaming? You are roaming for an hour and you legs are hurting… so what
do you do? Jump! Hop! Flap! Glide! Throwing is a personal favorite with both Fatima and
Maheen. You can take out all your day’’ frustrations in it without any judgments being
passed. Hafsa’s favorites are the pretty little stickers because they are so colorful. And
if you run out of them, you could always go to the treasurers (namely Melanie and Mary
Ann). Hiding behind the curtains seems boring to Fatima! … you could always pretend
there is a ghost behind them. Or you can Mix and Match! Add the stickers to the boring
curtains…

Zain’s Dictionary (A­O)  Zain’s Dictionary (P­W) 
Zain's Possible Zain's Possible
Words/Sounds Meaning Words/Sounds Meaning

aaph up pilay play

Animanima Animal shendi genevieve
din down sida sit down
Dow Down tar star
Ee Eat tidli tickle
Ess Yes Tii Tickle
Han, Hane Hand Tweeliling Twinkle Twinkle
Ju Juice Up Up
lig lights Wa Water
munch munch Wai Wait
No No wanatos want toast
num number  
op open
Page 9 of 9 17th November, 2008
Period 37

The Programme Goal that we focused the most on in the 37th period was language which is great because
this is really Zain’s biggest challenge. Language was focused upon 45 times during this period
The Facilitating Goals during this period were requesting (23), joining (25) and having fun (40). However,
this time around there was a larger spread and there were also focus on persistence (7), talking (7), building (6)
and calming him down (7).
The frequency of Zain’s interactive attention span is still in the ‘2-6 times per 2 hours’ zone for this
period but there was one ’10-12 times per 2 hours’. The highest frequency was experienced in one of Fatima’s
sessions where the activity included playing jumping, playing under covers and tossing toys! The duration of the
interactive attention span was spread over a large area with lots of ‘3-4’, ‘5-9’ and ’10-20’ minutes with the
highest duration being 20-30 minutes with Mary Ann. This session included playing in the bathroom, playing hide
and seek, writing, legs up, laughing and playing on the bed! There was 84% progress towards our goal in period
37.
With regards to spontaneous eye contact, the duration on average came out to be about 3-4 seconds
while the average frequency of his looking at us is 2-3 times per minute. The duration still seems to be hovering
around the same number over several periods now with a 63% progress towards the goal for duration while the
progress towards the goal for frequency was 61% similar to last period. It has gone down in the last two periods!
The highest frequency and duration was experienced in one of Mary Ann’s sessions who used techniques like
joining, positioning, anticipation, physical play, celebrations, imitating him, singing and the 3E’s.
Zain’s favorite method of communication continues to be moving us physically, taking us by the hand,
pulling us and giving us objects. Techniques to make him use words to substitute non verbal communication are
modeling, pronouncing the word slowly, clearly and repeatedly; acting dumb when he uses nonverbal
communication and most importantly to celebrate whenever he uses words/makes sounds to communicate! Words
that have been used by\with Zain in 37thperiods are ‘open’, ‘close’, ‘water’, ‘yes’ and ‘hug’. We’ve also been
monitoring some of words he uses and coming up with appropriate substitutes. In the 37th period, there were 20
clear words recorded and 25% of the words recorded were in context.
Zain has been welcoming us to the playroom although there have been some resigned acceptances and
some sessions where he has been initially resistant but he eventually accepts our presence. The progress
towards the goal has dropped further down to 47% signifying that something has been bothering Zain in the last
period. He sought our help in most of his activities 24 times and 41% towards our goal although there were
some (18) instances where he let us help a little bit only.
Zain‘s sessions have been a mixture of going out of the room and either having playtime outside or
responding to us by returning to the room although there were 5 instances where we could tell he was having
fun. There have also been sessions where he wanted to stay in the room and we could tell he was having fun
there. On the whole, he has been both in and out of the playroom in most sessions. The progress towards having
fun during playtime has been hovering around the 80’s in the last three periods. This continued to be the case in
this period with an 81% progress towards the goal.
Zain has been doing a lot of thing with his toothbrush in the self help section. These include throwing
them away, just looking at what the volunteers did, chewing at them and attempting to brush his teeth. However,
there is a need to find new and innovative ways to make the toothbrush interesting for Zain in order to achieve
the goal of Zain brushing his teeth regularly by himself.