Newsletter For Zain 38-9th Periods

Page 1 of 9 Periods 38-39

24th January, 2009

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 Fatima Rushna Hira Hafsa

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

Page 2 of 9 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 you qualified yourself. That is of course half the battle! Saniya had a mix of a lot of sessions but the 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 readily responsive as might have been the case under normal circumstances; but they got through that little hurdle and things have been pretty smooth otherwise. 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 due course. 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 while not others. This time Mehreen mapped out the tone/mood of the volunteers at the end of the sessions according to which one of Maheen’s sessions was ecstatic, 3 happy ones and 3 sleepy ones (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.

24th January, 2009 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 second one was a bit more challenging for Zain was a bit upset 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 to hold 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 clap while 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

Page 3 of 9 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 a difference. 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 a cushion 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 in her 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 is hard 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

24th January, 2009 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-Zain sibling 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 having his 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 very hyper! 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

Page 4 of 9 Periods 38-39

24th January, 2009

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 physical issue. 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 “Reminding thinking of a time when Zain did something that myself of the triggered a great connection can also help with the attitude and to stay focused. love that I 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

have for Zain helps me have the right attitude!”………. Fatima

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 Maheen finds 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 the importance 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 and maybe 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!? Fatima suggested 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! 

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 Fatima thought 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 it might 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 A Sticker Speckled Fatima! problem too for Mehreen but she 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 pulled down 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-inlaw told her once that this happens if a child has had lot of sweet things.

 

Page 7 of 9 Periods 38-39

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       

24th January, 2009 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 it was 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 a conversation 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.

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 have heard 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. We haven’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

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) and having 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 the frequency 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 area with 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 it is 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 of previous 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 two periods. 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 of words 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 of 48 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.