Newsletter For Zain 37th Period

Page 1 of 9 Period 37

17th November, 2008

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 Period 37

Life is settling back into a post summer’s pattern. There are of course ups and downs, but all is well since the routine is back on track and Zain has his playmates visiting him more often. Things have been going pretty well with everyone. Hafsa’s sessions have been fun and interesting. She has learned how to deal with tantrums; the frequency of their occurrence was helped her to get used to them. It was a doctrine of necessity. Sessions that are slow are the most problematic for her because then she gets very sleepy. So finding a way to keep herself engaged is her present challenge. For Mary Ann there has been a mixed basket of sessions. In one of the sessions she got upset when Zain bit her; she wasn’t prepared for it. So that was a challenge there… For Melanie there has been a lot tantrumming due to different reasons: computer, bathroom etc. He also has been roaming around a lot both outside and inside the house. But Melanie is fine with that, she can handle it. Even the tantrumming isn’t much of an issue for her personally; patience and persistence are the pearls of wisdom here! At times explaining things to Zain helps; other times she just lets him be. Safina too was slow so it proved to be a great

17th November, 2008

hindrance in her reactions towards Zain’s actions. A main motivation was roaming around but since her legs were hurting it was a little difficult. Still there was this one session in which, despite being slow, Zain managed to remain ‘present minded’. Maheen had one session which was good because it wasn’t boring. others have been kind of sleepy. It was quite daunting when once Zain tantrummed for an hour in a morning session. In one of the sessions he was neither interactive nor tantrumming but the session was simply very pleasant. So yes! We have our days. Maheen too has been trying not to phase out during her sessions. The tables are turned when you become exclusive in your sessions and just might miss a couple of opportunities to celebrate! Using toothbrushes has also been high on Maheen’s agenda lately… Fatima has had fewer sessions so she felt a little out of touch. A positive development however was the observation that she has been

The Winnie the Pooh, make a wish on a star song was another fun motivation:

Flap like a bird, Jump like a fish, Stand up, sit down, Wish! Wish! Wish!

Page 3 of 9 Period 37

17th November, 2008

always a challenge for Zain too; it’s simply a picking up a lot of cues from Zain. One of the lesson in ‘life’. sessions was rather nice because she went in a Zain has got a trampoline of his own now, but slow mood expecting a boring session but they unfortunately he doesn’t like it much. This was managed to match levels and it was fun! Fatima unexpected for he just loved Minaa’s trampoline. just feels wanted and loved when Zain wants to Perhaps it is a universal rule after all ‘siblings’ hold her hand; its quite a reward to look stuff Is generally more attractive then your forward to. own!’. Saniya has recently joined the group so our Recently we have been discussing many of warmest welcome wishes for her! She has had the phases that Minaa went through a couple of about three sessions so far. One of the sessions years ago. Covering her ears is a case in point. It was very overwhelming because Zain was is something that Zain does a lot as well. tantrumming. Quite alright! We have all been Saniya has been experiencing the first of every there, done that (myself being the sole thing with Zain. The very first thing she did was exception). A lot of what she has been doing is to roam for a good 45 minutes. This is something simply joining because she doesn’t know Zain Zain does with all his newly inducted playmates! very well, yet. But it seems promising! This once Its like Zain is ragging you, testing your limits Zain had her make nawalaz for him while he ate; =)… Mehreen calls it ‘breaking in a new always a good sign! volunteer!’. However from Zain’s perspective, it Mehreen observed that there is always a cycle in is always challenging to have a new face in the the induction of a new playmate for both Minaa arena, so perhaps this is his way of avoiding eye and Zain with initially there being low eye contact. But one thing is undeniable, all the while contact, low level of interaction and as the he is doing this, he has the most adorable playmate and the child get to know each other naughty expression! things start progressing. There are of course Melanie observed that Zain seemed a bit scared different challenges for different people. The going through the garage once… there must have question that comes to mind is ‘does this hamper been something different there. But then she the program goals?’. The simple answer is ‘no!’. In took his hand and every thing was fine there real life you meet new people where initially they after. Breaking cars is are another typical strangers disassembling boy sport and as you that Zain has been indulging get to know in lately. Also this once them you while tantruming, when become being ignored, Zain took comfortable down his shorts to muster a with them reaction! Well it does sound and they like an effective ploy… become your Recently EB also received friends. This quite an out of the blue slap is a way to from Zain while he was hone Zain’s Toy cars that Zain enjoys helping him down the stairs! social skills disassembling A pertinent question that slowly and Maheen posed during the softly in a meeting was whether you celebrate a controlled environment. A new volunteer is

Page 4 of 9 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 organized. Hafsa on the other hand finds it daunting to fit things into definitions. Regularity works here… from that perspective you get familiarised with it and into it with time. In this section language has been focused the most; Mehreen is very, very pleased with this development. Toothbrushes are, however, at a definite low! But that’s ok… we will get there, eventually. Personal facilitating goals too had some rather good ones such as ‘having fun’, ‘observing’ and ‘being user-friendly’. Interestingly enough joining and requesting are at the same level. Non-verbal communication was rather low so that is one area that needs some work.

17th November, 2008

 

Zain enjoying pakoras on his birthday! Among Zain’s motivations, interestingly enough, eating topped the charts. He is enjoying eating these nice little, round balls of fish now and thankfully enough there have been no problems with the diet. Bed is another huge motivation and jumping never fails to motivate him. In fact it has been a dominant motivation over time. Whispering is a fascinating new motivation!

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 Period 37

17th November, 2008

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 Period 37

17th November, 2008

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!’

17th November, 2008

Page 8 of 9 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 Words/Sounds Meaning

Zain's Words/Sounds

Possible Meaning

aaph Animanima din Dow Ee Ess Han, Hane Ju lig munch No num op

pilay shendi sida tar tidli Tii Tweeliling Up Wa Wai wanatos

play genevieve sit down star tickle Tickle Twinkle Twinkle Up Water Wait want toast

up Animal down Down Eat Yes Hand Juice lights munch No number open

 

Page 9 of 9 Period 37

17th November, 2008

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.