Download - Newsletter for Zain 38-9th Periods
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Page 1 of 9 24th January, 2009
Periods 38-39
By Hira Manzoor, Rushna Shahid & Mehreen Raashid
Circulation restricted to Program Volunteers to respect Zain’s privacy
Every one has been dealing with their individual
challenges during the play time recently along
with the general flow of the program goals. The
evaluations this time round were absolutely
riddled with questions and observations which
were discussed in a major chunk of the meeting.
Hafsa has been getting better with the novelty
of the various new situations that come her way.
It is very challenging indeed to match words
Zain’s Volunteers!
Melanie
Mary Ann
Saniya
Aveen
Maheen
FatimaRushna
Hira
Hafsa
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Page 2 of 9 24th January, 2009
Periods 38-39
with the sounds that Zain makes at times. Hafsa
has also become adept at coming up with stuff
to do while Zain is being exclusive. This she
says was something that just needed some
time investment on her part. Glad to know you
are at ease, ‘more so then before’ as youqualified yourself. That is of course half thebattle!
Saniya had a mix of a lot of sessions butthe underlying mood was generally good.
Thankfully no major tantruming manifested.Despite the fact that in between Saniya came
down with a cold and was not as readilyresponsive as might have been the case under
normal circumstances; but they got through that
little hurdle and things have been pretty smoothotherwise. She notes that it is a lot easier to
have your sessions close to one another and
at a regular pace. It is a lot easier to
maintain the flow and foster a stronger bond
with Zain. It also helps for it is easier for
you to maintain the mood on you own part; so
it is a lot easier to have the sessions in a go
without big gaps. Initially there was a first of
everything for the newcomers, and since it takes
time to get accustomed that is dealt with in duecourse. Saniya is getting to know Zain a lot
better now and is even catching some of his cues
here and there.
Fatima has had a really good period
except perhaps for the very first session which
was rather sleepy. Maheen enjoyed some whilenot others. This time Mehreen mapped out the
tone/mood of the volunteers at the end of thesessions according to which one of Maheen’s
sessions was ecstatic, 3 happy ones and 3 sleepyones (probably the morning ones). Maheen noted
that even if a session is slow it can still be
rather pleasant mood-wise. It does depend a
lot on our mood too for Zain is picking up on
our cues as well. Hafsa shared the experience
that sometimes when her mood is relatively down
it is in fact Zain who engineers something to
wake her up!
According to the afore mentioned mapping
Hafsa had one confusing session in her account.
Fatima had one ecstatic and one challenging
session while the challenging count for Saniya
was two.
Aveen had just two sessions one starting
off on an exclusive mood gradually shifting to a
more cuddly and interactive session. The secondone was a bit more challenging for Zain was a bitupset about his toothache.
The process of building and
requesting could translate into a very
interactive session as well. Joining is actually
a technique which we used to work with Zain
through his various stages of exclusivity.These are actually parallel techniques… its
moving towards interaction. Requesting is
employed where the program goals are being
reinforced, like asking him to say a word;nothing hard and fast of course.
Typically if he gives you contact, it’s a
great signal; but what if it’s a different mix
of signals and actions. Jumping for example…
could it be an ism? It is very interactive and
he doesn't really ignore you. But when he is
actually looking at you it does constitute a
green signal. The thing is that Zain likes tohold your hand when jumping. Could it just
be an interactive ism? He is happy but is he
looking?! He obviously wants you there…
perhaps you then become a part of the ism!
It is very self stimulating when one jumps on
the trampoline. Jumping is clearly an ism for
Zain especially when he doesn't let you add
any peripheral changes in the activity; e.g. if
he doesn't respond when requested to clapwhile jumping. Zain doesn't copy much; this
is a challenge for him. When he can imitate,
he needs to be really motivated in order to
learn, where he thinks he will actually be
able to copy. It’s an issue of confidence.
How many times has he actually been able to
copy? If he is not letting you build on it… try
something else; clapping is hard for him so
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Page 3 of 9 24th January, 2009
Periods 38-39
start with easier stuff. He can copy
language more easily.
Minaa’s verbal isms pose a similar
challenge for despite the fact that she is
looking at you, she is still very exclusive. So
always experiment… so join with adifference. See what happens! It is hit and
trial a lot of times.
Zain hurting himself by hitting is also
not really something to be worried about. He
does not really do that!. Even when he is
banging his head while tantrumimg, he makes
it seem more violent than it really is. Minaa
used to bang her head on the floor, Zain
however is more careful, he does it on acushion or the sofa bed! Even the bouncing
on the floor is done very smartly, in a
particular position that doesn't hurt. Hafsa
is employing the wisdom in persistence, even
with the stickers… her eye contact, she
thinks, needs to be worked on, perhaps with
some positioning techniques here and there.
Maheen too thinks her eye contact has been
lagging primarily because Zain is lounging inher lap and effectively cuts off the visual
link. Its quite all right… do it when you have
a chance; that would be when Zain readily
allows it. Hafsa just loves it when Zain is in
her lap. Sometimes the first half of the
session is very good but it becomes
progressively harder to maintain the same
level of enthusiasm in the later half.
Interaction doesn't come easily to Zain, it ishard for him hence there are periods of
interaction followed by exclusivity. In
Saniya’s case usually sessions that start on a
good mood are generally great throughout.
At other times when the start isn’t that
good the tones gets set for the entire
session. Switching off the computer is
certainly not a good note in this case. When
he is eating that usually indicates a good
start to a session. Most sessions on
weekends are interrupted a lot for there
are loads of distractions. The meetings too
are usually scheduled for then though
Mehreen tries to avoid clashes or has the
meeting in a room other than the lounge.Once when with Maheen, Zain
suddenly broke out in a ‘fake tantrum’! the
eye contact is usually low for he loves to be
in her lap. Even this once with Fatima Zain
was randomly throwing tantrums and super
short ones too. And then he wanted her to
feed him…how very endearing! Zain just
loves attention, is used to it.
Then there is the typical Minaa-Zainsibling rivalry. Minaa in fact stopped tearing
her books because she didn’t like the idea of
Zain having a go at it. One stimulating
occasion for great eye contact is when you
put your head in his lap. Maheen tried
putting her head in his lap too. At times it
works and not so at others. It’s all about
positioning but when it works it is amazing!
At times Zain checks if you are havinghis food. Out of the blue there are these
tiny fingers inspecting your mouth! Fatima
just loved her last few sessions where she
was pushing Zain a bit by taking his toys off
the shelf. It helped generate some verbal
interaction there. This is primarily the area
that Fatima will be focusing on for now. Mary Ann has been having great session
where both she and Zain end up being very veryhyper! She and Zain have also been whispering
to each other. He has been a good boy and
listening to Melanie and has been picking up
things when she asked him to.
There were loads and loads of questions
and meeting was primarily devoted to deal with
all the questions
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Page 4 of 9 24th January, 2009
Periods 38-39
He puts his fingers in ears randomly. Are his ears hurting or is he becoming more
sensitive to sound? If it doesn't happen that often then perhaps it could be a physicalissue. At times when you make an excited sound he makes that gesture. Fatima thinks it’s
more like an ism and is perhaps isn’t really sound related. But there is certainly some
sensitivity in effect here. If he gets upset, covering his ears calms him down and
sometimes he even takes Mehreen’s hands and uses them to cover his ears. Mehreen has
noted that when he is very upset, she covers his ears and it calms him down.
I suggest that we keep the tooth brush in the bathroom so that he can get used to
it there. They are already there actually. It is true, toothbrushes in the shelf are just
like another toy while in the bathroom it is more like a tool for brushing teeth. The idea
is that by having them there we are helping him become more comfortable with them.
Tooth brushing is still quite a challenge for us.
We could keep a bunch of toys in our pocket one of which we could pull out as and
whenever he makes a sound…This was Fatima's suggestion and though it didn’t quite
work for her the first time there is no harm to try again. Persistence and patience! It
just might pay. In any case it is worth a try!
Reminding myself of the love that I have for Zain helps me have the right attitude!
A nice thought… a story by Raun in a park employed a like philosophy where his sister said
that ‘I love you no matter what’. Even during a tantrum making a very conscious effort at
staying calm and having an open accepting and loving
attitude does pay off. Zain can pick up our cues when we
are ill at ease. Hence he would certainly be able to pick
up our loving attitude as well. If you become calm, your
calmness affects him and he becomes calm too. Also
thinking of a time when Zain did something that
triggered a great connection can also help with the
attitude and to stay focused.
Did not know how to position myself when he wanted
to do shooshoo all over the room? This was Saniya’s
dilemma. This is something that makes most people
uncomfortable. Maheen shared that she just sits on the
“Reminding
myself of the
love that Ihave for Zain
helps me have
the right
attitude!”……….
Fatima
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Page 5 of 9 24th January, 2009
Periods 38-39
dressing table or table. A loving attitude, afore mentioned can unlock many doors. It
makes the situation more manageable which other wise dangerously starts resembling
button pushing. It’s a case of conditioning yourself, learning to deal with a situation that
makes you uncomfortable. Essentially a lesson in life…
What to do if I can't find the toothbrushes? This is usually a situation that Maheenfinds her self stuck in… no worries. Simply pretend you have one and practice on that.
I need a word to match "ayenyanaye" Since Zain used this word a lot during this one
particular session, so perhaps it is not simply an ism because he was interactive at the
time. Maybe he just likes the sound of the words that he uses in this manner. It’s about
how comfortable you are substituting words for the sounds he makes. How quickly you can
do it while celebrating him for the sound(s) that he making. Fatima has gotten beyond
that phase, for what matters more are good reactions. Its an acquired through practice
and Maheen is progressively becoming better at it. Mehreen re-emphasized theimportance of listening to the language webinar! Listening to it again and again does pay
off…the language part needs a lot of focus. It is after all Zain’s primary challenge. It
simply starts with listening and then eventually becoming attuned to what is being said.
There are days when Zain is very animated and then there are other quieter ones. You
just have to attune your ears to it and respond accordingly. Of course remember that we
have to celebrate all his efforts at attempting to speak
What to do if he is tearing paper and he does not let me join in? Pretend to tear,
do it in your mind. Position that you are tearing so he is able to look at you, pretend andmaybe you will get a connection. It is at times heart wrenching to see those lovely stencil
books being tattered without mercy! The point is, if he is isming, its not the time to
distract him. Just be interested in what he is doing and what is fascinating him so as to
hold his attention so. Introducing should only be done when there are strong green lights.
Exclusivity interrupted may lead to tantrums, pinching and perhaps more exclusivity.
Think of the time when you were
really trying to concentrate on
something and someone interrupted
you… maddening wasn’t it!? Fatimasuggested that a good strategy
would be to position one self so as
to be in a better position to affect
a change when the time is right.
Pretending to join helps if you
observe a lot… as if what he is
doing is the most fascinating thing
in the world. What really made
Tearing Frenzy!
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Page 6 of 9 24th January, 2009
Periods 38-39
Saniya uncomfortable was the demise of the book. She even tried to salvage some part of
it by hiding it under the pillow, but alas! Plans don’t really work around Zain… he rules the
show!
‘He was comparing my long nails with his…’Zain was intrigued by Fatima's nails when she
had them all nice and polished up. Eventually he did push her hand away which Fatimathought was because he was horrified. Mehreen thinks he was probably just done looking
so it need not be under a negative connotation.
The abacus rope is fun and Zain also likes it. We can make a word train out of it.
Saniya told everyone about how Zain was dragging the abacus rope all round the room. He
just loved it and there is so much that could be done with it. Melanie made the rope for
Zain. We could certainly employ this in our play time.
Is the plastercine non-toxic? Zain likes to eat it…Non toxic it is, but eating a lot of itmight give him a tummy ache. Zain does like playing with it. Minaa and Zain used to go to
this art class and the first time he was given the plastercine, he literally gagged…
probably didn’t like the feel of it. We have come a long way since…
We need to have more stickers and in pairs if possible. Stickers…we can certainly
get some more. Maheen however is not that crazy about stickers, they stick every where
she says =). Getting a greater
variety of stickers is a bit of a
problem too for Mehreen butshe is going to try. Anyhow,
even if you join in it doesn't
necessarily have to be with
stickers as well. Hafsa however
just loves the stickers, they are
more her style.
He was scratching his bottom
a lot and eventually he pulleddown his pants… Perhaps this
is a sign that he needs to go to
the loo. Another theory is that
he must have had a lot of
sweets. Mehreen’s mother-in-
law told her once that this
happens if a child has had lot of sweet things.
A Sticker Speckled Fatima!
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Page 7 of 9 24th January, 2009
Periods 38-39
Don't know if we should use force to not let him take off
his clothes or to just let him take them off? Please do not
use force, let it be a non-issue. If he wants to take them off,
let him. He knows that this is something that makes some of us
uncomfortable so he does it to get attention. Of course on the
other hand he may just want to do shoo shoo or is feeling warm.Now what might be the right time to suggest that Zain put his
clothes back on… usually everyone just calls Melanie or Mary
Ann for that. It is ok in the summers but perhaps not in the
winters… however the house is pretty warm so don’t worry much
about that. Melanie shared that she just lets Zain be… she
explains it to him and then leaves it at that, and after a while
he puts them back on. Please remember that 9 times out of 10
he would do it when he wants to do shooshoo. Probably once
would be to push you and create a control issue. Once at night itwas freezing cold and Zain was just being stubborn about his
clothes; so Mehreen just bundled him into bed without them.
How to deal with Zain's sudden tantruming when you can't
tell what could be causing it? Even in the case of out of the
blue tantrums the golden rule is always to remain absolutely
calm and with no abrupt reactions or distractions! Ask randomly
if he wants this or that. Treat it like a conversation, react
matter of factly, talk calmly and explain to him…Have aconversation with him as if his tantrum is just him talking to
you, Ask what the matter is, if you can help, tell him everything
is fine, tell him you love him and are there for him and be very
sincere.
He has been licking things. What to do? Depends upon what
he is licking. If it is something dangerous, then we need to act
quickly. If not then let him for a little while and join if he is
exclusive -- meaning that if the licking is an ism pretend to lick just like him. If it becomes a regular behavior, then we would
need to get a check up done. For now let’s just wait and see.
Maybe he had something on his tongue, perhaps a hair or simply
a bad taste. Ask him to open his mouth, try to help. Hafsa noted
that the licking in her session was rather playful, kind of
naughty like it wasn’t proper. This in fact is what Minaa used to
do as well quite some time ago.
Zain’s Dictionary Aaph,
up
up
Animanima, animani animal
Annie Mary Ann awanado I want to do
din down Dow Down Ee Eat Ess Yes
Han, Hane, hand, handa, handi Hand Hey Hey
Hu, hag Hug I wasawa I want that Ju Juice lig lights
Menamie Melanie No No
num number op open pilay Play Ro Roti
shendi, shaname genevieve sida sit down tar star
tidli,tialli,tic tickle Tweeliling Twinkle Twinkle
Wa, wawa Water Wai Wait
wanatos want toast tick tick tock, tickle or
sticker yeah, yesh yes
Note: bold: Zain’s Word/Sound un‐bold: Possible Meaning
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Page 8 of 9 24th January, 2009
Periods 38-39
How not to get bored when Zain is being exclusive and the session is very slow?
Think of something fun, laugh, smile, try a fun way of joining, and love the ism. Fatima
has this head joining thing going on… she talks to Zain in her head, tells him about her day
and it is actually therapeutic! As a matter of fact you can do it loudly as well! Mehreen
uses another fun tool… she smiles ! She gives Zain the biggest sunniest smile possible and
sometimes it actually works or you can just start to giggle and then laugh like you haveheard the funniest joke. Last but not least you can jump for a bit to chase the cobwebs
of sleep away. You never know Zain may join you.
Most of the time that he wants to go to the bathroom, he needs to go do his
shooshoo, so what to do? If he wants to go to the bathroom, if you can handle it
yourself then take him but otherwise ask someone to help you out. Signs of wanting to do
shooshoo: Looks uneasy, stands in a particular way, expression, goes to the bathroom,
stands near the bathroom if door is locked, and takes his clothes off, scratching and
sometimes just becoming very, very still.
What to do if your 3Es are low? Too much on your mind, tired sleepy…?! Its ok, all of
us have our individual challenges to work on. Maheen jumps on the trampoline. For Fatima
too doing physically active stuff builds up her energy. Think of something fun, laugh,
smile, do something fun, focus, singing. If you are tired and on top of that hungry too, eat
something before you go in. Zain did something very interesting when Hafsa was drinking
water, he made her gulp it down in one go and at the end he made sure by checking the
cup! (Also see the answer for what to do when you are getting bored)
Zain likes being cuddled and will sometimes sit in my lap. Sometimes he is
interactive and sometimes he is not but when he sits in my lap he is facing the other
way and then you don't get eye contact. What to do? Let him be because most of
the time when he does this he is avoiding eye contact. He is being very clever! This is
low level of interaction. Then try in a while to see if he will give you eye contact and of
course persistence always pays. Most of the time he is just in a good mood, so don’t worry
about it. Even if he does it just to avoid eye contact, there is still a connection there.
We can use colorful paper to play with Zain! Of course… glaze paper perhaps. Wehaven’t hence far consciously employed colors. Maheen still got the impression that
perhaps Zain was aware of the colors. He can sort things color wise, but not necessarily
according to colors in isolation.
What to do if you get hurt while playing with Zain? Hummm… this transpired when
during the initial phase of the program while we were keeping the doors locked, a
volunteer and Zain both got hurt in the process. Fatima thinks that it might help to gain
sympathy from Zain, could even play it up a bit. This once when Fatima was stuck under
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Page 9 of 9 24th January, 2009
Periods 38-39
the bed Zain tried to assist by pulling her hair. It did hurt, but it is the intention that
counts! In any case, call out, the door is open and there is always someone around. And
God willing it will not happen again.
Facilitating goals focused on in the 38th-39th periods were primarily persisting (21), joining (16), 3Es (15) andhaving fun (41). There were also some requesting (11), following his lead (10), and celebrating (5). Some of the
programme goals that need to be focused on more are Language Clarity, Self Help Skills and Frequency of
Interactive Attention Span.The frequency of Zain’s interactive attention span is still in the ‘2-6 times per 2 hours’ zone for these
periods but there was one ‘continuously interactive’ and three ’10-12 times per two hours’. Since thefrequency is spread over a large range there was only 13% progress towards the goal which is slightly better
than the previous four periods. The duration of the interactive attention span was also spread over a large areawith lots of ‘3-4’, ‘5-9’, ’10-20’ and ’20-30’ minutes. The good news is that there were three instances of
‘Typical 30-60’ minutes which is obviously our ultimate goal. There was 86% progress towards the goal for
duration in these two periods.With regards to spontaneous eye contact, the duration on average came out to be about 3-4 seconds
(73 times) but there were notable instances of 5-6 seconds (23 times) and 7 seconds or more (3 times). The
duration still seems to be hovering around the same number over several periods now with a 70% progress
towards the goal. The frequency of eye contact continues to be ‘2-3 times per 1 minute’ on average although itis spread over a larger range of ‘1 time per minute’ to ‘5 times per minute’. There were 9 instances of ‘5 times
per minute’ in the 38th-39th periods. Progress towards goal for frequency was 64% still following the trend ofprevious periods.
Zain’s favorite method of communication continues to be moving us physically (14), taking us by the hand
(15), pulling us (15) and pointing (16). There were also some instances of pinching (3) and biting (2) in these twoperiods. 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 to communicate! Words that have been used by\with Zain in 38th-39th
periods are ‘roti’, ‘down’, ‘hand’, ‘water’, ‘toys’, ‘nice’, ‘up’, ‘down’ and ‘hug’. We’ve also been monitoring some ofwords he uses and coming up with appropriate substitutes. There was 21% progress towards the goal of trying
to substitute Zain’s nonverbal communication with verbal responses. In these two periods, there were a total of48 clear words and 40 words in context recorded by volunteers. Out of the words given to focus on, most people
focused on ‘tickle’ (6), ‘yes’ (14) and ‘water’ (8).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 goal is back to 62%. He sought our help in most of his activities (41 [44%]) although there were some(27) 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. He hasn’t been doing a lot of thing with his toothbrush in the self
help section. 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.