Wednesday, October 28, 2015

September 2014

Well here we are in 2014.  Zeno will be 15 in a couple of months.  Like every other parent of a teenager on the planet, I don't know where the time has gone and how my beautiful, bouncing baby has turned into a big lumbering man-child.  So where are we at now?  Well, he's still attending the same Secondary school - just barely.  His flexi-schooling arrangement is still in place, although we did get a lot of hints and prods about increasing his timetable.  These died down however when Zeno failed to keep to his flexi timetable and barely managed to get to school for even one day a week, and that not even a full day.  So now they're expectations have been reduced such that I think they would be over the moon if he attended for the shortened timetable we initially agreed with them (4 half days a week).

We are attending CAMHS, the child/adolescent mental health service because of Zeno's depression, talk of suicide, and latterly his admission that he has voices in his head shouting at him or talking constantly.   After making this admission Zeno backtracked a little and certainly didn't share the same information with CAMHS as he did with me.  I must say first that he said he understands that the voices are in his head and are not really separate people talking to him.  But he did say that is exactly what they sound like - different people, different personalities, and one is female.  He also said they say very rude things, and once he said they tell him to hit or punch someone who is annoying him.  Naturally, with a family history of schizophrenia and mental illness generally, this was pretty devastating to hear.  In our family of 9, I think most if not all of us had a fear of developing mental illness and the next worse thing after that, or perhaps even worse than that, would be for our children to have a mental illness.

Last week, the first week back after the holidays, he made it in on the first day back which was Tuesday.  Wednesday is supposed to be his only full day at home, although he sees a counsellor every other week.  Wednesday evening I told him I expected him to get up the next morning when I called him, and wouldn't brook any excuses.  On Thursday morning I called him - and called him, and called him.  I'm not allowed go in his room but I rapped on the door.   He didn't, wouldn't, couldn't - whatever, I just don't know anymore - get up.   I told him through the door that if he wasn't going to school then he wasn't going on his computer, or tablet, or any kind of games until the evening.  And he would do at least 3 hours of school work.  He said fine, great, it's better than getting up for school.   When he did eventually get up he complained of not sleeping and being exhausted.  I gave him the science work I had prepared for him but after 15 minutes he said he wasn't able to concentrate.   I did get a little frustrated then and a storm was sort of brewing over both our heads for a while but eventually I managed to let the frustration go and said simply, that he had a choice whether to be educated or not but if he was going to choose NOT then I'd rather he went to school and didn't get educated there, than stayed at home and not get educated here.    I know that's a little difficult to untangle but he understood what I meant and I think it got through to him.  I mean I THOUGHT it got through to him, especially when he did get up the next morning (Friday), despite coming into my room late at night complaining of not being able to sleep.

He got up when I called him, ate breakfast and eventually got dressed and ready after constant reminders from me.   The bus picks him up at 8.30 on the dot, he's the last person to be picked up (and the first to be dropped off, by arrangement because of his travel difficulties), and I have a severe OCD about keeping people waiting.   We would usually stop at the shop to get him a snack for breaktime but we didn't have time because of all his delaying tactics, but thank God I was saved an argument by the fact that the shop was closed due to power cuts.  We walked on towards the pickup point, and I was getting uneasy because the bus wasn't actually there and I was afraid if we had to hang around waiting he would say "you see?  all that rushing for nothing I am never going to listen to you again when you tell me to hurry up", which is just the kind of thing he would and does say.   But, thank God again, just as we arrived at the pickup point the bus pulled up and in he reluctantly climbed, with the escort greeting him cheerily.   I walked home with a sense of relief that he had made it into school for 2 days out of the 3 on the timetable for that week.   When he arrived back home at lunchtime he was beaming and my heart lightened with glad surprise.  Until he told me the reason for his cheerfulness - a good long sleep at school!   yes, halfway through his first lesson of the day he had got up and gone to the office where he proceeded to lie down and drift away to a blissful slumber, from whence he arose when it was time for his taxi home at 1pm.

Wednesday, October 24, 2012

Numbers Work With Zoodie

Here's a glimpse of the numbers work I'm doing with Zudie.  He has to work really hard to make sense of abstracts, so up to now it's been a lot of groundwork with connecting the abstract numbers, written and spoken, with concrete amounts.  Montessori is great for this and we've been working with Montessori materials since he was very little but even more since we gave up on his special school a couple of years ago.    We used the spindle boxes first, wooden spindles have a lovely feel to them and very nice to handle. The spindle box has 10 compartments where the spindles go, not 1-10 but 0-9.   The empty zero compartment is a nice visual of what zero means and by now Zudie has a very good grasp of that.    The number rods Lots of real-life counting of stuff and adding on or taking away whenever the opportunity arose of course, that's ongoing for all home-edders.



We worked on bead material a lot over the last couple of years, sometimes with Zudie on his own and sometimes with his brother; making the bead triangle, laying out the bird's eye view of numbers with bead amounts beside them, 1 down to 9, 10-90, 100-900, 1000-9000 in columns from right to left (the way the numbers would be written, units at the far right).   This is laying down lots of foundations, for example Zoodie knows that 5 ten bars make 50, although he wouldn't necessarily respond correctly if I ask him randomly “what's five tens?”.    That will come later insha'Allah.   Since he is able to recognise numbers into the hundreds I decided to extend the bird's eye view activity into a partitioning exercise, eg get him to lay out all the numbers in their columns, with or without the corresponding bead amounts and showing him a card with a 2 or 3 digit number – say 24.   He has to make the number 24 by taking the appropriate cards from the columns – 20 and 4 and place them on a tray, place the corresponding bead amounts underneath, and then put the two numbers together so it looks just like the written number 24 (so the 4 goes on top of the zero of the 20).    Zudie was able to do this activity and even 3 digit numbers, so that is something I'm hoping to build on in the future.   It seems a bit advanced in comparison to his arithmetical skills (see below) but then again an uneven skills profile is common enough in LD children and his older brother hates doing very basic sums but manages more complicated stuff like fractions with relative ease.    We worked on the teens (seguin) boards as well, wooden boards with 9 number 10s painted on, and a slot where single digits can be slipped in to cover the zero so as to make 11, 12, 13 etc up to 19.     It's a nice partitioing exercise showing how the numbers 11-19 are made up with one 10 and a number of units.   


Early in the term I was doing “one more, one less” with Zudie, thinking it was a fairly simple concept to work with.     I had tried this before the summer but he obviously wasn't ready then so I thought I'd try again.    It was a bit hit and miss, although funny enough when we do it in real-life situations he seems to understand okay (like demanding another sweet when he's been given one less than his brother, or understanding “one more time”.    Although it seems so straightforward as a maths lesson it obviously isn't for him After demonstrating the concept with concrete amounts like counters, or buttons, or toys or whatever – here's three counters on the table, if I put one more how many will that be? Four (giving child lots of opportunities to answer of course).    When he seemed to “get that”, giving the answer fairly consistently although with some puzzling exceptions (4 pens, if I put one more how many? “7”) - I maybe a little optimistically attempted to introduce the concept of “one less” which didn't go over quite as well and so I abandoned it when I saw frustration setting in a bit.


So what we've been doing for the last couple of weeks is early addition.    It's something I've attempted previously but not had a lot of success with, until now.     Clearly the lesson for me – again – is that when the child is ready they will fly but there's no point pushing them off the branch until then.


We started off by adding counters – here's 2 counters, and here's another 2 – if we add them together how many counters will there be?    Remembering to vary the language – you take these 3 counters, I've got 2 counters here, how many counters is that altogether? - 4 counters, plus 2 counters, equals......and all the time demonstrating very visually and concretely with the counters, pointing to them, putting them together. Then, “how many counters have you got?    I've got x amount, can you count how many it makes altogether?”


You really have to demonstrate the basic concept you're trying to get across hundreds of times in lots of different ways.    That's the nature of many learning disabilities and especially those where abstract concepts are difficult to grasp – this applies whether teaching numeracy or language skills.   Sometimes the child can only take 5 minutes of this, that's fine, there might be another 5 minutes later on when he'll be amenable. When you home educate you learn to spot the teachable moments and make the most of them.


Anyway we've been doing this for a couple of weeks, me and Zudie, and he's really getting the hang of it. He's even using the terminology plus and equals.   I got some really nice addition books, flip books of lots of sums – 2 numbers to five, 2 numbers to 10, and 3 numbers to 10 all in one nice neat and colourful folder type book.    And another wipe-clean book with sums that you do, filling in all the numbers of the operation and then pulling a tab to see the correct answer.    So what with that and all the brightly coloured counters, balls and chess pieces we've been using he hasn't shown any signs of boredom although it's not his favourite activity either.


I think next we'll use the Montessori bead material to do the adding, using the addition strips for him to write on.   I also have an iPad app using visuals of the bead material for addition which would be good for extending the activity to something a bit more abstract.    Ultimately the aim is for Zoodie to be able to do the sum in his head, or even using his fingers, when it's written simply (eg) 4 + 2 =

Friday, September 28, 2012

Things haven't gone smoothly for Zeno this week at school.   Following the success of flexi-schooling last year, when he made a lot of progress in most subects despite only going to school part-time, Zeno was supposed to be trying a slightly more extended timetable this term - three full days and one half day as opposed to one full day and three half days last year.   He's coped okay so far although he refused to go in on a couple of days and was genuinely sick one day too.  

Now that he's a teenager his body clock has changed a bit, and he's more of a night owl.  Getting him up at 7am-ish is an ordeal for both of us, although it seems to be getting easier (I hope those aren't famous last words).   Monday is his day off so his week at school began on Tuesday, and it should have been a positive day as he had a history lesson (the only one of the week) and the topic was the first world war, one of his passionate interests.

Unfortunately he got into an argument with the history teacher about the fact that he uses a pen, not a pencil, which means his mistakes can't be just rubbed out with an eraser and presents a conundrum when he has written his answers in the wrong boxes.   When he told me about this exchange, just hearing about the fact that he was writing sentences made my heart give a little leap, he hates doing handwriting and it's a source of worry to me how he would manage to compose and write long answers - never mind essays - in his future exams.    So it sounded like progress to me.   But the history teacher told him he should be using a pencil and brooked no arguments, although to be fair the one argument he doesn't seem to have thought of bringing forward was the plain fact that he uses a pen on the advice of the Occupational Therapist and has special permission never to use a pencil even in art, the noise and the feel of it makes him crazy.    So the lesson was derailed and it had a knock-on effect on the rest of his day at school.    His daily report page from school simply stated that he had been disruptive and argumentative during the lesson which is very annoying.    Thank God Zein is a bit more communicative now, a couple of years ago I wouldn't even have got his side of the story without extensive questioning and forensic analysis of his answers.

So that was Tuesday.   On the Wednesday there was a theatre trip in the afternoon.   Zeno was initially enthusiastic but on the actual morning of the show he said he didn't want to go and took a bit of persuading.   They were due back at school quite late, after 6pm, so the school bus couldn't bring them home and they had to be collected from school.    So I was sitting in the school lobby waiting for them to arrive back, chatting pleasantly with another mum, when the door swung open and a familiar voice shouted "good riddance to all you horrible lot, I never want to go anywhere with you again" and my heart sank.   At first it wasn't clear who he was angry at, as he walked past me shouting "if you're thinking of asking for my forgiveness you can forget it!" but the angry rejoinder "actually you owe me a big apology" came from one of his teachers who was following close behind.  

I got her version of the story there and then - at the end of the performance, as they were leaving the theatre, Zeno had apparently delved in some rubbish and picked up some chocolate and eaten it.   When she told him off about it he became verbally aggressive and continued in that vein throughout the journey home on the tube.    The teacher misinterpreted my "is that it?" as being my response to Zeno's overreaction but it was the teacher's overreaction that dismayed me.   That was even before I had Zeno's version, which was slightly different in that it involved the same teacher's discarded box of chocolates which still had one unwrapped sweet in the box and which he thought he would have, as a reward perhaps for picking up her rubbish from under the seat in front of hers and taking it to the bin.   She shouted at him, unfairly he thought, and that kind of thing always puts him out of sorts.    And once Zeno is out of sorts he stays out of sorts for at least a few hours, and unless you handle him with care he will express himself loudly and at length no matter where you are with words aimed to shock and wound.    One of the things he told me he had said was his wish that the teacher would somehow find herself on the train tracks just before the train arrived.    Of course I told him - this was on the bus home - that that was a terrible thing to say and it accounted for the poor woman's agitation when she had been speaking to me.

I sent an email to the head saying I was disappointed that relatively minor things were escalating to the point where Zeno was still seething several hours after getting home, and he replied that he agreed.

Zeno stayed home on Thursday but on Friday he set off in the school bus in the morning with instructions to apologise the the teacher for upsetting her with the horrible things he had said.   And when he came home I checked that he had done so (knowing that he wouldn't do so unless he saw the reason why), and was glad to hear that the teacher had also apologised for shouting, so it turned into a positive lesson for Zeno in resolving conflict.   I was also relieved to hear that his threat to advise her to take an anger management course hadn't been carried out, and that he'd given up his idea to propose a motion at the next school council meeting to have her sacked.

Tuesday, June 12, 2012

So, yesterday I had a consultation with an Osteopath about Zeno with a view to him having a course of treatment of cranial osteopathy.   It was offered through my sister who works at the therapy centre, as far as I can gather they offer a sort of pro-bono service to relatives of their employees which is pretty amazing, given the commitment of time involved.

The consultant was very impressive, hugely knowledgeable about labour and birth and also about behavioural issues in children.   He apparently has a wide experience of treating children and is prepared to take the treatment sessions entirely at Zein's pace and said we should look at doing some treatment over a period of a year, and that he isn't promising any kind of cure or anything like that but really thinks he can help Zeno feel better, feel more grounded and calmer.   I am kind of in awe of someone who gives their time and professional skills for free like that when they are also very busy with paying clients.  It's really wonderful and I already appreciate it, without even knowing for sure whether it will be beneficial or not.

The consultation involved discussing my son's present difficulties and his pregnancy and birth history.   The Osteo referred to the birth as traumatic which was a bit upsetting but I think he had a point.   It's not that it didn't occur to me before but having it confirmed by a professional makes it harder to push out of your mind.   I've been thinking and remembering the whole birth experience and I'm not sure how exactly accurate all the details are but I've tried to write it all down here.

I was 31 years old when Zeno was born, and he is my eldest child.    He was due on 8th February but that day came and went without any signs of imminent labour.  In fact at the last ante-natal appointment before the due date the midwife commented that the baby's head was still floating high above the cervix and not 'engaged' into it which is the usual indicator of readiness for birth.  He was also in the occito-posterior position, or back-to-back which is a more descriptive name for it.  For the head to be in the optimum position for travelling down the birth canal, the baby's front should be towards its mother and its back along the outside of the bump, but Zeno was the other way around.   Oh yes, and he was a big baby, they kept telling me with a frown and a purse of the lips, but exactly how big - 8 & a half pounds? 9? 10? - they couldn't say.

On 14th February, which was a Sunday, the first sign that things might be starting to happen was that my (substantial) bump changed shape and looked to me - from above - the shape of a missile or zeppilin.  Later on I started getting contractions, they were very weak to start with and gradually got stronger but unfortunately they were very erratic - they would get quite close together - 3 or 4 minutes - and then tail off and I wouldn't get another one for an hour.   I knew from all the pregnancy magazines and birth stories I'd read that there was no point contacting the midwife at this stage, but was still hopeful that things might speed up overnight or next day.   I didn't lose a whole night's sleep but I didn't sleep well either and got woken up by the contractions a few times.

As far as I remember Monday was a similar story, contractions coming and going of varying length and intensity, sometimes quite close together sometimes miles apart.   It was exciting and scary when I timed the contrations to find they were getting from 5 minutes to 4 minutes to 3 minutes apart, but then I wouldn't have a contraction for half an hour or more and would get disheartened.   And so another broken night passed. 

On the Tuesday I had had enough, the contractions were getting more painful, were sometimes close enough together to at least justify being checked over by a midwife, so I took myself off to hospital.    They hooked me up to a machine and declared me 'not in established labour'.   They wanted to send me home but after I tearfully described my previous two nights of sleep broken by contractions they said they would keep an eye on me for a few hours.   They gave me pethidine and put me in a room by myself to try and get some sleep, I was drowsy but still feeling the contractions.   After about half an hour a midwife came and said she'd been timing my groans (!) and the contractions seemed quite regular and about 3-5 minutes apart so she hooked me up to a machine again and somehow the contractions tailed off to little or nothing yet again.

I was sent home as it was decided that established labour was still some way off.   There is a sort of impatience about midwives when women are in the very early stages of labour and having what feel like quite painful contractions but which of course are nothing compared with the full-blown contractions of the late stages of labour.   I think it was particularly annoying in my case because they weren't taking into account how confused and anxious I was about the stopping and starting of the contractions.  Anyway I felt patronised and dismissed.   I would almost say humiliated.

Tuesday night I got less sleep than the previous two nights, I think due as much to anxiety as the still erratic contractions, wildly varying in timing and intensity but as far as I remember not really getting that close together at all.   Wednesday was the same story during the day, but at night the contractions got really strong, I got no sleep at all as I tried to 'walk through' the contractions but was frequently brought to my knees, literally, where I would occasionally doze off at the tail end of a contraction with my head on a chair.  I was still timing the contractions and happy that things were speeding up, but they seemed to be stuck at 2-5 minutes apart with an occasional longer gap, and not getting to consistently 2-3 minutes apart which I knew would be ideal and show some kind of serious progression of labour.   By morning I decided I was going into hospital and not coming out till I had the baby.   It was Thursday by now.

In hospital I was examined and the contractions were monitored for a while, I was asked about pain relief and I said I'd had enough of the pain and wanted an epidural.  The anaesthetist was busy but would be with me at some stage, I was told, no rush.   The midwife stayed with me and asked me if I wanted gas and air, which she proceeded to demonstrate.   I had a contraction, or maybe a couple, and used the gas and air and found it a wonderful relief from the pain.   I sat down on the low chair beside the bed and started to fill in the form while the midwife chatted about procedure.   Suddenly I felt another contraction coming and stood up and leaned over the bed (my memory of this is very vivid even though it was 13 years ago).   I breathed in the gas and air.  The midwife paused in her chat and waited for the contraction to pass, we both waited, me breathing and grimacing and taking some more gas and air.....and we waited....she came over and put her hand on my bump, frowning......and still the contraction went on, I was starting to panic a bit because this was something new, something strange and something I had never read about, a contraction going on for more than 2 minutes.....getting to 3 minutes...the gas and air was no longer working even though I was sucking on that mask as if my life depended on it, and suddenly the midwife, who was 6 months pregnant herself, dashed out of the room and ran down the corridor.   I need hardly say this did nothing to soothe my panic but she returned really quickly with a man in surgical clothes who turned out to be the anaesthetist, and an assistant I think. The contraction had subsided at last, and I asked the midwife dazedly (all that gas and air!) "what's happening?" to which the anaesthetist, a horrible loud jolly person, said "YOU'RE HAVING A BABY DARLING" with heavy sarcasm.    And then he started barking instructions at me which were something like "get on the bed - push your spine out as far as you can - press your chin down on your chest - HARD! - and whatever you do "DON'T MOVE".   I understood he was trying to find the spot for the needle to go into my spine, dangerous if it went in the wrong place, so I tried very hard indeed not to move and prayed that a contraction wouldn't start.   This was when my o/h arrived, at the point of maximum chaos and panic.   Ten minutes later I was sitting up in bed, pain-free for the first time in 4 days, just with a strange sensation of cold liquid flowing along my spine.  

Nothing much happened after that, the contractions were shown on a printout from the machine I was hooked up to, and proved to be just as erratic as before.  My o/h passed the time getting high on the gas and air.   I was examined periodically but labour wasn't progressing and I think they were concerned.  

Eventually I think they thought the printouts were showing possible signs of distress in the baby and I was given a consent form to sign for a c/section.   They gave me an oxygen mask "for the baby" they said and then added hastily "nothing to worry about, it's just in case".    I was wheeled into theatre and prepped and my o/h changed into surgical gown and mask and they put a green curtain between me and my bump.   What I remember most vividly is the light, incredibly bright and hot, shining down on my unseen middle.  'Dad' took a peep over the curtain but decided to stay on my side of it.    There was a surprising amount of rummaging and tugging to get the baby out but out he came eventually, strangely quiet, and was immediately taken over to some kind of resuss table to be thoroughly checked over - I think seconds count in these cases.    But, alhamdulillah, all was fine and he was wrapped and laid down beside me, and 'Dad' held him and whispered the call to prayer in his ear, the athaan for the funeral prayer at the end of his life, a reminder that this life is just a brief moment in our overall existence.   Baby weighed 9 pounds 4 ounces, or 4.2 kilos.

Me and baby were wheeled to the ward, silent and dark now at about 4.45am.   I wished the o/h didn't have to go, or at least could have stayed for a bit longer, but he was ushered out pretty sharpish.  I fell asleep quickly even though I didn't think I could possibly sleep, and was woken at about 7am by the nurses drawing back everyone's curtains and calling out cheerfully (imagine how annoying that is to a person half dead from exhaustion).   It was the high dependency ward at the Chelsea & Westminster Hospital, still relatively new in 1999 and state of the art.  There were only 4 beds on the ward and we had 2 nurses all to ourselves to hand us our babies and advise about nappy changing.   I didn't appreciate at the time what luxury that was, not until I had the unfortunate experience of giving birth in St. Mary's Paddington.

Zeno latched on beautifully but his blood sugar was low.   He was feeding a lot but apparently not getting much benefit from it.   The midwife checked my supply by squeezing my nipple and the milk shot halfway across the room.  I was too tired to be outraged.   Another midwife came on duty, she made me feel uncomfortable without knowing why exactly.  Visitors came and went.   Zeno's blood sugar was being monitored and it was decided to try and feed him formula, with a little cup, in an effort to try and raise it.  It didn't seem to make much difference so they decided he needed to be fed gastro-intestinally, with tubes through his nose direct to his stomach.  I had to feed him at intervals through the tube, drip drip drip, I can't remember if it was my milk or formula.   The strange midwife took personal offence at me for something I said or did, it was downright weird and unprofessional and unnerved me and made me think of Beverly Allit.    I was so glad when she went off duty and another midwife came on, took one look at the feeding tube and said let's get this sorted and get this off him.   I think she let me feed him normally as well as through the tube - I wonder if I'm remembering that right?   I was pathetically grateful for a sensible and professional person to take charge of us.   He was off the tube feeding within 24 hours and progressing normally, he fed through the night almost and I still wasn't getting any sleep.   I was put onto a different ward as I could now walk unassisted to the toilet and was off the drip.  I asked the nurses at the station outside to take him and let me get some sleep but they refused, they said they could give him a bottle if I wanted?  yes, yes, take him and give him a bottle.   I closed my eyes and went unconscious immediately but they woke me about 20 minutes later putting him back in his cot, wide awake and grizzling.  

At some stage my mother-in-law came to visit us, she had the hump for some reason, she looked my baby over and said nothing much.  Isn't he big, I said, but she refuted that with stories of her babies born with fat hanging over their wrists..   She advised me, through my o/h, to sit cross legged in order to feed.  I tried to explain that I had an abdominal wound and it wasn't possible but apparently she took offence at my rejection of her advice.   I got annoyed because o/h also didn't seem to understand why I couldn't sit up on the bed cross-legged.  

I was in hospital for 3 nights, didn't sleep much while I was there, so by the time I came out on the Monday I could count on the fingers of both hands the number of hours I had slept in the previous week.   At home I took to the double bed and baby fed through the night without disturbing me much, and 'dad' put pillows all around the bed in case baby managed to roll out and at regular intervals came into the room and stood over us fretting and wringing his hands, which he called 'looking after you and the baby all through the night', when I asked him next day to look after the baby for a while and let me sleep on my own.

Zeno continued to feed through the night for the next 2-3 years and demanded constant attention during most of the day, as his daytime sleep consisted of 'power naps' of 10-20 minutes three or four times a day.   So it took me years to catch up on my sleep.   But of course, as most mothers would say - they're worth it, All the sleepless nights, exhaustion and worry are worth it, many times over.

The Osteo listened to the main features of this birth story - of course it wasn't as long as this! and explained that such a long labour isn't good for the baby, due to the head pressing down on the cervix continually and not getting anywhere, and also due to the amount of adreniline in the baby's body for an extended period of time.  The three plates of the skull will often overlap as the baby attempts to engage with the cervix and a prolonged period of this might cause problems.  that's about as much as I understood from the Osteo's advice.   I'm hoping to learn more in the coming sessions and I'm really hoping that Zeno will enjoy the experience and benefit from it, insha'Allah; he has already agreed to come along and meet the Osteo and see what cranial osteopathy is all about.

Sunday, March 11, 2012

Kickboxing Sundays

Sundays is now kickboxing day. No surprise that Boudie loves it and is progressing well in class. Unfortunately the other two can't cope with class protocol just yet so we have to shell out for private lessons for them, after Boudie's Sunday morning class.

Zeno has got a couple of difficulties which he is managing fantastically - one is the fact that no hoods are allowed in the dojo, the other is just the whole martial arts discipline of the dojo. The sensai is being very understanding, he gave Zeno a headguard to wear in place of the hood which Zeno accepted quite easily; he continues to wear the jacket for the first part of the lesson but after building up a sweat it comes off, and so does the headguard which is quite surprising to me after all the brouhaha at school about insisting on keeping the hood up (sometimes pulled down over his face as well). I can see that Zeno does feel very uncomfortable and self-conscious at the beginning of the lesson as there are usually a lot of people around, some of them have just finished a class and are leaving, but some will stay and another private lesson will go on in the other half of the dojo, and of course there will be other sensais around. But he is very motivated to do kickboxing, and seems to get sufficiently into it so that he is able to forget to be self-conscious. Zeno's not all that physical or sporty usually, apart from rollerblading in the park. The sensai is really working him hard and trying to build up his fitness levels, and we'll be working on that during the rest of the week too, as well as trying to improve his diet. Not easy as he has a very limited range of fruit and veg that he will tolerate (no cooked veg at all) and he craves carbohydrates and sugary fruit juices. He likes his meat though, as long as it's dry and not saucy........he's got a lot of potential as he seems to have inherited his father's physique, if he decided to take up a sport I think he could do very well.

Zoudie loves kickboxing but only in the house, he refuses even to do the private lessons with his brothers, I did try to explain to the sensai that he needed to just sit and observe for the first few weeks and eventually he might feel comfortable enough to join in, but he kept trying to include Zoudie - in a nice way, just getting him to 'give me five' and asking him to punch the pads ten times just from where he was sitting on the sidelines, but Zoudie didn't like it. He cooperates because he doesn't want to cause a fuss which to him would make things worse, but he doesn't like it and gives me grief afterwards, all the way home and for hours afterwards. And then when Sunday approaches - say from Friday - he starts perseverating about not wanting to go to kickboxing, crying and begging, and it's just like school all over again. So far (it's only been 3 Sundays) we have been ignoring him and telling him we've got to go there, no choice, and he doesn't have to do any kickboxing, but he says "I don't like that man talking to me". Today Zeno was talking in the lesson about how he was so hot and tired his brain had become a black hole, or something like that - and I said to his Dad "Zeno just can't stop the yakkety-yak" and Zoudie said "yes and the man too can't stop yakkety-yak". I need to try and persevere and carry on bringing him but it's quite draining and so much easier to just say "okay don't come stay at home with Baba".

I'm so tempted to have a go myself, it looks like great fun and ages since I did anything physical.

Wednesday, January 11, 2012

Grump in the Lift

Today got into the lift with Zeno, going to school for the afternoon lessons. The lift stopped on its way down, at the fourth floor and before the door opened he muttered (very loud mutter) "Jerks!". I barely had time to rebuke and warn him before the doors opened fully and our neighbors from the lower floor got in. They are a lovely elderly couple, very pleasant. Zeno's response to their greeting was to turn his back on them and say angrily "TOO MANY PEOPLE IN THIS LIFT!". I tried to smooth things over by saying he was feeling a bit claustrophobic. "No school today?" the man asked, and I said we were going in for afternoon lessons. "I take it he doesn't want to go?" the man smiled, as his wife nudged him and said "shush, shush, don't". "It's okay he doesn't mind too much" I said but Zeno immediately contradicted me by saying in his angry voice "I DO MIND!!! I DO!!"




I shouldn't feel upset or embarrassed but I do. I think it's more of a dread that they (or whoever) might judge Zeno for appearing to be rude and uncaring. One of the reasons we try to teach our children good manners is so that they will be liked and accepted by others. As a naive young mother I had thought that all I had to do was model good manners and then remind my children a few (hundred) times. I used to think that children were rude and selfish and so on because that's how their families treated them. They didn't have the benefit of a good example, was all. Oh how we do judge!




Anyhow, Zeno got a lecture as we sat on the bus. There are 6 billion people on the planet and if everyone is grumpy to everyone else all the time it makes life so unpleasant. I (I said) like to have a positive experience every time I come into contact with others, whether it is my family, the neighbors, the shopkeeper etc. I am polite and friendly to people and when people are polite and friendly back it makes me feel good. If people are grumpy and rude to me, it makes me feel upset. Life is more pleasant if only we can be nice to each other.......and so on (and on!). It didn't seem to make any impact on Zeno, sadly. He just gave that low growl that Marge Simpson taught him (bad habits are easier to pick up, it seems). The final, the ultimate argument in favour of making more effort to be pleasant to people and not grumpy, is of course that it pleases God, and the other kind of behaviour doesn't. We've spoken before (okay, I've spoken before) about how this life is short, although it doesn't feel like it when you're 12. We are alive for eternity. This life on earth is only the blink of eye, less than the blink of an eye, compared to eternity. This is a very good reason for being patient and forbearing about whatever befalls us during our lifetime on this earth. Being patient, not rising to angry feelings, accepting whatever we cannot change - this is what makes us successful in the context of eternity. People who are greedy and selfish often become powerful and "successful" in this life. But success in this life is no guarantee of success in the next life - which is infinitely longer than the present one. The only way to guarantee eternal happiness, rather than eternal sorrow, is to seek to please God in all our actions. Pleasing God means being patient and kind to people, not being selfish and rude. Forgiving people when they upset you or do you wrong, just as you hope God will forgive you. True, it's not easy. But, it can be worked on. With a little practice, we can get better at all of the actions that please God. Even if we fail sometimes, He will reward us for the efforts we make, and when we ask for His forgiveness it is freely given.




Insha'Allah I will keep telling Zeno and one day it might bear fruit.......

Sunday, September 25, 2011

Zudie Update September 2011

It's been a very eventful year for Zudie. Exactly a year ago, September 2010, he started at a special school for moderate learning difficulties (MLD), a school which is transitioning to being an autism specialist provision from next year. On paper, and on first inspection, the school seemed fine. Adequate, I thought, reasonably good. The local authority had at the last minute suggested Zudie attend a mainstream school "with support", and then demonstrated why dealing with them has been so frustrating over the years by withdrawing their suggestion once I had provisionally agreed. I had made it clear to them that the "support" for Zudie should be SEN qualified, possibly that's what made them change their minds. In my experience special needs classroom assistants have no qualifications (in anything, let alone SEN or general education) and minimum training/support and their wages is pitifully low. Of course there are some people who do a wonderful job despite all this but when it comes to my kids' education I have no intention of crossing my fingers and hoping for the best.

So Zudie started at this school, and he was supposed to have a "gradual and supported integration". I took him to school for the first week and was provided transport there and back (taxi). He also had his ABA tutors with him for some of the time. In the second week we were encouraged to get him used to travelling on the school bus. The bus escort was (is) an absolutely lovely lady, very kind and affectionate and sympathetic. So that did help, and he was able to travel by bus with a minimum of fuss. Unfortunately once he arrived at school the atmosphere was less caring/supportive. The "gradual and supported integration" went by the wayside as the school seemed as keen to get everyone supporting Zudie out of the classroom as quickly as possible. I was very conscious that the class teacher and even more so the classroom assistants found it a strain having us around. I tried not to get involved in the class too much and just be sitting in a corner where Zudie could see me and be reassured. The ABA tutors I think were encouraged to do the same. When the teaching staff suggested I leave the classroom for short periods I agreed, keen to co-operate with the experts. It all sounded reasonable to me, after all we were only there in the very short term (we had been given a 4 week transition plan for Zudie). In the event we were only tolerated for 2 & a half weeks. The school decided that Zudie was doing so well that it was in his best interests to withdraw the extra support in double-quick time. I hadn't gone back after the first week, I wasn't really welcome and I was made to feel my presence was a hindrance to Zudie's progress. Zudie's ABA tutors were dismissed in a similar fashion, so that after two and a half weeks he was expected to manage full-time at school without any familiar faces to reassure him or give him confidence. Unfortunately he hadn't bonded at all with any of the classroom assistants or the teacher, in fact he expressed extreme dislike of all of them. He did like one of the lunchtime supervisers, who was quite a caring person and who spoke kindly to him, and similarly a teaching assistant from another class, with whom he had a little interaction, took his fancy and he became attached to her.

There was a brief period, in about weeks 3-5 of his school career, when Zudie appeared content to be going to school. During this period he would get dressed in the morning and go down to the waiting school bus with only a perfunctory protest, and on arrival home he was cheerful. Those were optimistic times! My eldest had started at secondary, my youngest was in Year 1, they were all in school, all day (9-3.30), for the first time ever! A serious amount of housework was done, also for the first time ever! Plans were made, driving lessons were begun and OU courses applied for. It was exhilerating, the hours of freedom between 9am and 3.30pm. Unheard of, at least for the 11+ years since the first one was born and the shackles of motherhood were put on. Well there are worse shackles and worse jobs in the world, but for loss of freedom nothing beats motherhood because of the 24/7 aspect of it, especially when the childrearing is 99.9% on one pair of shoulders.

Enough of that! I love being a mum and don't bear any resentment towards the kids, only occasionally at the lack of practical help from dad and grandma.

Things began to fall apart for Zudie even before the first half-term holiday. One day he came home very upset, saying that Phoebe had shouted at him (one of the teaching assistants). He perseverated on this all evening, alternately crying and getting angry about it, saying he hated school, he hated Phoebe, he hated Lyndsay (class teacher), he didn't want to go to school. Next morning it was extremely difficult to get him dressed and out the door. I wrote a note in the home/school diary, asking them to go easy on the tellings-off until he was more settled in. I did get a reply saying that Zayd had deliberately thrown one of the toys on the floor and had been told firmly not to do that. They made it sound so very neutral but having spent time in the classroom I could just see that sour-faced assistant rapping out the words and Zayd being intimidated and losing what little confidence he had. I tried not to think about it too much, but I had been struck by the utter lack of human feeling shown to the children by the teaching assistants, the teacher was gentle enough but the overall impression was of 3 automatons who didn't particularly care for any of the children but had a schedule to implement and boxes to tick and were determined to see it through every day. I'm possibly a little too mushy myself, but I had absolutely fallen in love with the children in the class and was taken aback that the other adults didn't seem to have any genuine love or even liking for them. I don't know if that's because of maternal feelings, if I would have been the same before I had kids......? I know that none of those women did have children, and it's perhaps significant that the people Zudie did bond with, the bus escort and the lunchtime superviser, were mothers.

From then on, Zudie started to cry and protest before going to school, and he also cried when he came home, sometimes for hours. It was sometimes possible to distract him for short periods of time but he would always return to the theme of school and how he didn't want to go, and how he hated Phoebe. He drew pictures of Phoebe, a sad or frightened looking Phoebe with himself in pursuit, eyebrows drawn together and a grim smile on his face. He drew pictures of the school on fire. It was difficult and upsetting for everyone, even at weekends Zudie would cry and perseverate about school, even at half term and over the Christmas holidays. I kept the school informed via the home/school diary, but they rarely replied. There was supposed to be a meeting with the class teacher to discuss progress in October, but that was cancelled. The parents meeting at the end of term was also cancelled. The class teacher repeatedly told me everything was fine at school, but I heard a different story from the lunchtime superviser, I heard that Zudie cried often and told her he wanted to go home.

Of course my main anxiety was that Zudie wasn't settling in, wasn't even reluctantly tolerating school (like his younger brother) never mind enjoying it. But that wasn't the only problem. The quality of education he was receiving, that all of the children were receiving, seemed extremely poor. There was no teaching going on as far as I could ascertain. From my observations during the week spent in the classroom, there were a number of tables in the room of different colours, the children were instructed in their schedule which table to go to and in which order, and each table had different kinds of activities. So, for example, the blue table was for literacy. When the child's schedule showed that a visit to the blue table was required, they went there and sat down and took out their work tray and did the activities which had been put there earlier by the class teacher. Zudie's activities were mostly matching word labels - a labelled picture, say of animals, and velcro-backed cards with the word labels printed again, and he would have to put the cards on top of the label. This was ridiculously simple for Zudie, and his ABA supervisor told the teacher as much on the first day, in a nice way (he said it was fine as a settling-in activity). It suited the teaching staff to have activities that didn't stretch the children, it was called "learning to work independently" and they preferred not to have any interaction with the children while they worked. I did see one little boy struggling with what to do and one of the teaching staff expressing impatience with him "come on you know what to do!" which did cut me to the quick. Poor little Krish, so adorable, friendly and eager! Of course they were always patient and nice to Zudie while I was there, but then they would be, wouldn't they? There were other activities as well like playing in the sand or with toys buried in a jelly-like substance (to encourage the children with sensory difficulties). I had tried to emphasise to the teacher that after six months of ABA, not to mention the 3 years of learning alphabet and phonics before that, Zudie could read a little and was motivated to learn further, and he could write his name and age as well as his brothers'. In fact while I was talking to the teacher about it Zudie obligingly wrote on a piece of paper "Zudie is 6 and (his surname)". His letter formation was unsatisfactory and needed work, I mentioned as an aside (not in front of him!), assuming that this was an activity any school would be bound to undertake with a 6 year old of Zudie's abilities. I had been a bit disheartened to find out that "reading", as illustrated on Zudie's schedule by a stick boy holding a book, simply meant taking a book from the book box and sitting down with it, looking at the pictures and turning the pages - again, each child did this in isolation and without any input from any teaching staff. On one occasion, Zudie was at the yellow table doing a staff-led activity which involved making (ie sticking 3 prepared pieces of card together) masks of characters from a book. I watched how the TA did this activity, with each of the children in rotation as they took their turn at her table. First she held up the book and read the few words on each page. then she introduced her cardboard characters and showed the child how to put it together, using tape I think, and helped them to the extent they needed it. When it was Zudie's turn, she held up the book and turned to the first page, in the pause before she started to read Zudie started to sound out the words - unbelievably, she stopped him! She brushed aside his intervention and read it herself, briskly. Most of the interactions between the teaching staff and the children seemed to follow a similar course - brisk, adult-led and adult-centred. But still, if Zudie could have been happy there I would have been overlooked this shortcoming and filled in the educational gaps at home.

Unfortunately it just got worse after half-term, he sobbed hysterically in the mornings and upset all of us, sometimes his younger brother would start crying and refusing to go to school as well. By the time I put Zudie on the school bus my nerves were in pieces, I would be left shaking and tearful myself. I always tried to talk positively about school with him but it didn't help.

The school was due to move in November 2011 to a new site, which is only a 5 minute walk from our home. Since no-one at the school was able or willing to help us in any way with Zudie's school phobia I came up with a plan which I put to his teacher at Zudie's annual review in February. After explaining that I was really at the end of my tether and didn't know what else to do, I suggested that Zudie might find it easier to settle in if the school day was shorter, so it might be a good idea for him to do half days at school and have afternoon tuition at home. The move in November might be a good opportunity to make the transition back to full days.

I could see at once that Lyndsay wasn't keen. She said that the local authority would never allow it, which took me aback. I said I would ask them anyway. I didn't really share her opinion, I thought I had I could make a good case for it. I left the meeting and wrote the next day to the local authority. After a couple of weeks when I still hadn't had a reply I phoned the placement officer at the SEN department and left a message. Eventually they got back to me. They refused my request on the grounds that the school did not agree to it! In fact they did not even acknowledge Zudie's unhappiness and school refusal as a major problem, and said he was fine when in school. I began to see the teacher in a different light. Sympathetic and caring to my face, but in reality conniving and deceitful and worst of all primarily concerned with her school and not my child's welfare. Dim as I am, I did not at that stage realise that telling the local authority how unhappy Zudie was at school would be inferred as severe criticism of the school by both the school and the LA. The school would have to defend itself at all costs - the cost in this instance being my reputation as a parent and Zudie's chance of ever settling in at school. Thereafter I believe the school painted me as unreasonable and neurotic and the LA was quite willing to accept this, given that the alternative would involve admitting that they were getting things wrong, and putting them right - far too much work! So I had to be put firmly in the wrong.

I must have had some inkling of this even at that stage, since I didn't lay emphasis on the school's shortcomings, but merely made it a particlar problem of Zudie, that he was finding it hard to settle for his own reasons and would benefit from having half days until he felt secure. Unfortunately, frustratingly, any kind of mention of Zudie's "insecurity" or his failure to bond (HIS failure!) with any of the teaching staff in the classroom, the class teacher seemed to take personally. It's very hurtful, even now, to think of the extent to which my child's needs were disregarded, because the school couldn't even cope with the suggestion that there was a better way to do things for my son, and the local authority backed them to the hilt.

There was an extraordinary meeting at the school which was attended by the class teacher, the head teacher, and a local authority representative on one side, and myself and my sister on the other. At that stage I had given up sending Zudie to school. When the class teacher trotted out her lies about Zudie having settled in well and being perfectly happy in school, I said - unwisely but I couldn't help it - that the lunchtime superviser told me he cried a lot and was very unhappy. The head teacher's reaction was stupefying. She jumped out of her chair shouting "who was it? give me her name and I'll sack her!". She claimed she was angry because the lunchtime superviser hadn't told anyone about a child being upset and crying, and she should have. But of course it was as plain as her face that she was angry that the lady in question wasn't toeing the party line and singing from the same hymnsheet.

When the local authority representative summed up the meeting, she ignored all the comments made by myself and my sister and said that Zudie had obviously settled in well at school and she agreed with the school that it was a suitable placement for him, and they would see how the home visit went (I had agreed to a home visit from another local authority person, one who was an autism education specialist) and take it from there. Although I objected to her conclusions I was happy enough that she wasn't saying Zudie had to be returned to school.

Now it's September 2011 and Zudie still isn't back at school, he is being educated at home and making progress in every area, and he's much happier too which is the most important thing. His name is still on the register at the school which I am extremely unhappy about, I did request that they remove it but the local authority has refused, until such time as they can inspect the education he's getting at home and be satisfied that it is meeting his needs. If only they had been taken as much trouble over his school education! I asked them back in July to please hurry up and come and inspect us but I still haven't heard. No doubt the school is getting funding on his behalf in the meantime!

For an eight year old he is behind in his language development, and he is still stark naked at home as he hates wearing clothes; he has other sensory issues too, and he gets easily frustrated mostly for unfathomable reasons, so there is still some traces of autism but overall he's doing brilliantly masha'Allah. He is intelligent for sure, only that he learns differently and needing more effort and repetition than most other children. Sometimes he surprises me with his insight. For example, last Easter he lost a tooth and got excited about the tooth fairy - not something I would tend to encourage but he saw it on Peppa Pig. So he was asking me "if I put this tooth under my pillow will the tooth fairy come and take it, and will she put money?" (oh the language development, the complex sentence structure, absolutely glorious and unhoped for, thanks be to God!). So I was distracted and unenthusiastic besides ("hmm? oh yes, yes, I suppose...."), which he picked up on. Finally he said "if I put this tooth under my pillow will you take it and put money.....?"). So I was absolutely thrilled that he completely understood the process without being told or having it explained to him, wherever that came from I don't know, I never told him about the tooth fairy but neither did I ever tell him that the tooth fairy doesn't exist! But he worked it out for himself.

At the dentist a few weeks ago, he had an anaesthetic injection and we were sent down to the waiting room to wait for it to take effect. He told me it felt funny, and I was trying to explain about anaesthetic, while he touched his cheek curiously with his finger. "is it like a force field?" he asked.......priceless! "Yes, JUST like a forcefield" I said delightedly. My clever boy masha'Allah.