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.