newsletter for zain 38-9th periods

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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




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




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




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




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!




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!




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




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




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.

newsletter for zain 38-9th periods

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