A month (or two) of mainstream

Leo goes to nursery school every afternoon for three hours. It is a mainstream lower school, quite a big one, and it has no autism unit or any autism expertise, although they proudly mentioned that they had an autistic child there last year. Leo was diagnosed with autism just over a year ago and he does not speak at alll .I sometimes have to explain that part again. I have had people tell me that their son/grandson is or was non-verbal, but what they actually mean is that they don’t say very much. Leo doesn’t say anything. Even the paediatrician had to ask me several times to make sure: he doesn’t say any words? Nothing at all? Mum or dad, yes, no? Does he ask for food? Not with spoken words, no. So I made sure from the start that the school were under no illusions about his lack of speech.

On the whole people are reasonably surprised to learn that my non speaking autistic son is in mainstream school. This includes people who know a lot about autism as well as those who don’t know quite so much,  I sometimes feel I have to justify the decision. I say that we will review the situation, and it may be that he will attend a special school in the future, but this is more or less a lie. I don’t even know why I say it. I think maybe I seem neglectful or even delusional, and I need to reassure people that I am taking care of him properly.

This is not meant to be a criticism of specialist educational settings, or parents who choose that option for their autistic chldren. It is simply that after careful thought and several school visits I felt that it would never be the right place for Leo. The main reason is language. His speech may be nil, but his understanding of language is exactly what you would expectfor a child of his age (recently confirmed by a test with a long name that is used by speech therapists). I don’t know how unusual this is for an autistic child, but I get the impression from professionals that yes, it is a bit unusual, at least for a child with no speech. It may be it is not really so unusual, but the fact that he can demonstrate his understanding is. His responses are not always what you would expect, but that is a separate issue. He loves words, stories, language – he can read over 100 words now. He needs to be immersed in language and ideas, and in my view the best setting for that is mainstream.

So with a reluctant headteacher, an enthusiastic Early Years teacher, and an inexperienced 1:1 all sort of on board we were ready to go.

Two days in and I was questioning my decision big time. The summer holidays had seen a huge increase in eye contact and joint attention (where you are both paying attention to the same thing – and are checking that the other person is seeing it too). Even some showing off. Some significant word attempts. Babbling. Increased ability to cope with situations which had previously caused him extreme distress. It was all lost in those first two days. All of it. By the end of the week I estimated that a year of progress had vanished. Even worse, he seemed sad, flat and not even interested in his ‘special interests’.

Drop-off and pick-up are not the time for in-depth discussion with your child’s teacher. She would say he had been a ‘superstar’ before handing him over – sometimes he had a sticker to prove it. But I had no idea what had been happening. I’m sure many parents would say they have very little idea what goes on, but Leo could not even give me the most basic information. He finds yes/no questions hard at the best of times, but he had lost the ability to even attempt a nod or shake of the head.

I made enquiries as to when the home/school communication book would be in place. I discovered that the 1:1 had been off sick from day 2. Oh ok – so he had been introduced to his special helper, only for her to vanish…I suggested that might have upset him, and asked to be informed if she was off again. Leo can deal with most changes, but in order to do so he needs to know what those changes are. I explained all this. A little later it emerged that none of the staff know any of the signs that Leo uses to communicate. This was news to me, although to be honest I couldn’t remember what they had said about signing. I was horrified to think that he might have been signing to them and they had no idea what was going on. I sent in sheets with signs on and demonstrated a few of them myself whilst standing in reception – it all felt a bit desperate, and I couldn’t help thinking of the specialist nursery with its specialist staff, who have their own bank of specialist advisors to help them adjust the provision for each child. I realised I had been assuming too much. Things that were obvious to me were not at all obvious to them.

Signing training was set up. The home school communication book appeared. The Speech Therapist visited and made changes to the PECS book (Leo uses this to communicate as well as signs) as it was being used incorrectly despite training. The 1:1 recovered and returned to work, only to be off again, but gradually things started to improve.

The first thing was the pictures of Leo at school (they have a system where you can view your child’s ‘learning journey’ in photo form). He was taking part in everything. He looked happy. He was still subdued at home, but maybe he was exhausted rather than sad. I asked him how he felt on his ipad app. He chose happy and tired A little of the horrible sinking feeling lifted. I asked if he liked school. He chose yes.

The next thing was a meeting with the teacher and the specialist advisory teacher for the Early Years Team. She had observed Leo and gave a detailed description of his activities that day. She then looked at me and said Amy, he does not stand out. How bizarre that that should be considerd a fabulous thing for me to hear about my child. To be honest, I did feel happy in that moment, whilst later reminding myself that the goal is not simply to fit in and not be noticed. No no no indeed. Nevertheless, it is a sign that he is coping, and that really is crucial.

The home-school communication book is so so important. Not only do I know what problems or misunderstandings there may have been, but I can have a ‘conversation’ with Leo about his day. You played with the playdoh today and made an ice cream. He still doesn’t want to go most days, but when he gets there he runs in with a huge smile for his 1:1. Most of the time he is the only one not wearing uniform (we can fight that battle next year). Gradually his eye contact and word attempts have returned, along with his sense of humour.

The school playground is not my favourite place – not as a child, and not as a parent either. At Leo’s school a rather tense and awkward queueing system has developed, which about 90% of parents and collectors adhere to. It is very noticeable when I am called to the front of the queue. I can almost (but not quite) hear the tutting. But sometimes I do make it to the front through the traditional waiting method. When that happens I can hear the noises Leo makes to calm himself (the inappropriate noises of the blog name). I know everyone can hear them. Leo’s little brother recognises them and says Leo. It is all fine, but nevertheless it is there.

The worst day so far was the Christmas card incident. The children’s artwork is turned into a card design which parents can then purchase. The artwork is available for parents to view  – a classroom assistant finds your child’s artwork while you are in the collection queue, you look at it, say how lovely it is and then say how many you want to buy. The sounds of parents admiring their child’s artwork echoed down the queue. My turn. I saw glimpses of fairly accomplished Christmas trees, reindeer, and general Christmassy- ness as the assistant turned the pages. She came to a page where there was a blue blob. Yep, that’s Leo’s. He loves to paint, but it is more of a sensory experience for him and he is not interested in the final product. Nothing wrong with that.

I would have been fine, I really would, but the assistant looked at me and did a face, a kind of aw isn’t it a shame face. She gave me the order form and I mumbled something about filling it in later. I was fighting back tears so unsuccessfully that  I had to fake a coughing fit to cover it up. I then became worried people would think I was crying about my tragic child, which I absolutely was not. I felt guilty for feeling upset, as I am not sure I would be crying if I had a typical talkative child who had lots of friends, but happened to be not very good at art. I also felt angry that maybe nobody had helped him with his picture – had they made sure he understood it was a Christmas picture??

I then had a week of agonising over whether or not to buy the cards – if I did was that a rejection of his work and his effort? Or would it have been highlighting something that he struggles with? I wanted to avoid someone opening the card and making the same face the assistant had made – even though I knew how unlikely that was. Eurgh. In the end it was resolved by his 1:1 presenting me with an alternative picture, which is a little more Christmassy than the blue blob. Coincidentally, over the next few days he displayed an extreme jump in his artistic ability, drawing several faces in the same day which were really quite good. He was not interested in preserving them and destroyed them immediately.

On second thoughts, maybe the worst day was when a different classroom assistant was calling what she thought was Leo’s name (Hugo) and pointing to her eyes and almost shouting look at me, look at me. I thought of all sorts of wonderful ways I could have dealt with this afterwards, but what I actually did was say quietly His name is Leo. I then watched in some distress as Leo looked at the shouty lady and gave a loud cry. She flashed him a big fake smile and said bye even more loudly. Her whole demeanour said to me that she knew how to sort out this autism nonsense and get him behaving properly. I was so shocked, and again thought of the special school, full of staff who know all about not forcing eye contact. I did bring up the issue later with the teacher, and autism awareness training has been arranged for all Early Years staff.

The collection queue can also bring more positive experiences: I peered into the classroom last week to see Leo standing facing all the other children. Everyone was singing and signing. I couldn’t hear what the song was about, but Leo appeared to be very confidently leading the whole class in this song with some very emphatic signing. I don’t know if he was invited to stand at the front or if he took it upon himself. It was wonderful and unlike anything I have ever seen him do. There will be bad days no doubt, but I have had a glimpse of him coping and flourishing that will help me stay calm through those times.

Regression, special school and a glass door

I wrote this post shortly before Christmas, published it, then realised I wanted to edit a couple of things. I then got caught up in a horrendous sickness bug and various other chaotic events, with the result that I forgot to re-publish it. So apologies if you have already read this; an  update will follow shortly, as much has changed since I wrote this:

Spinning on the spot, flicking fingers in front of eyes, hands covering ears, unusual eye and head movements. These were some of the autistic ‘behaviours’ my son did not display. Until recently. Now he is doing all of this, plus more of the stuff that he was already doing, avoiding eye contact, staring into space, getting distracted from the task in hand.

Worryingly, he is also getting confused about about language. Leo go and get your shoes resulted in him setting off purposefully, only to do a full circuit of the kitchen and living room, returning empty handed. When I asked him again he simply wandered off, as if he didn’t understand. I went to show him what I meant: your shoes Leo, see, by the door, we found them. He didn’t object to any of this, but it was as if he was not connecting any of it up either. Now, I know that he has the capacity to understand, I know that. Just as I know that he can make eye contact when he is happy and relaxed, not because he is being praised or rewarded, but because he wants to.

These new developments tell me something is wrong, but it is not the behaviours themselves. He can’t speak but he is sending me little messages, tellinme something is too much for me, I can’t cope. He puts his hands over his ears just before he falls asleep, when everything is quiet. When he does this he gives me a look as if to say help me. It is so clear I can almost hear him say it.

I have informed all the professionals involved with Leo about this new development. I don’t know if I expected help or reassurance, but I didn’t get any. This is the pattern of autism was the message, delivered with a head tilted in sympathy and a slightly sad look. They have seen so many autistic kids it is nothing new  or alarming to hear a mother say that autistic behaviours have increased. This is just what autistic kids do. Well, that is not enough for me. I feel compelled to get to the bottom of it, to find out why he is in distress.

Christmas? I doubt it. Leo is very ‘ho hum’ about big changes. I have been given an advice pack about how to handle Christmas with an autistic kid, and I am sure a lot of it is highly relevant to a lot of kids, but Leo has problems with almost none of the issues mentioned. He is neither surprised or upset by big changes going on around him, whether they involve a new house, a new room, or a bit of tinsel.

Pre-school? Hmmm…. this may have something to do with it. If his home-school journal is to be believed his sociability levels at pre-school are through the roof. He has been laughing with other children, playing with the same toy, taking a turn without crying, and letting another child cuddle him. Parents of autistic kids will know how huge those things are. I know if I have been to a party or even a social occasion of any sort I have to collapse when I go home, Even if I have enjoyed myself I certainly don’t want to talk to anyone else for a while. Maybe pre-school is like a party every day. Too much! Too too much!!

He also has ‘worktime’ at pre-school. This is where he matches shapes, colours, hammers pegs, sorts teddies. threads beads, and generally follows instructions, sitting nicely with hands down. By ‘hands down’ I do not mean he is prevented from flapping his hands, but that he should not grab the items before the teacher has presented them on the table and told him what she wants him to do. I have mixed feelings about this, but it is for tiny amounts of time so I am thinking it is not going to be a significantly distressing to cause the kind of changes I am seeing. The crucial thing is that the ladies who teach him will let him stop his work if he is having a difficult day and they enjoy his company, and even appreciate it when he swaps round the cards on their schedules in an attempt to manipulate the session and avoid activities he would rather not do. There is some expectation of compliance but it does not take over the session, and Leo and I both appreciate that. However, is worktime becoming too much for him? Or, more likely, is he bored with it?

Is he having too much screen time? It is easy to let this creep up. His angry birds obsession makes him laugh, and his laughter makes me laugh, and I can sometimes convince myself it this means it is good for him! In fact though I think screen time has actually been decreasing. He has been siging ‘stop’ when the TV is on and seems to be easily overwhelmed by it.

Leo now has a PECS (PIcture Exchange Communication System) book. Could this be causing stress? It contains pictures and photos of things he can ask for -food, games, actvities. It is fairly simple. The Speech Therapist has introduced a ‘sentence strip’ and has placed an ‘I want’ card on the left hand side. Instead of simply bringing me a picture Leo has to place the picture card on the strip next to the ‘I want’ card. He then has to remove the whole strip and pass it to me and I read it. We sign the sentence at the same time. It is of course much easier to just give me the card and he has let me know very loudly that he does not agree with the new regime (I am not overly fond of it myself but I do understand why we need to persist). However, I think it is unlikely this is the sole cause of his recent regression.

My number one suspect is sensory issues. They are deserving of a whole post really, but for now it is enough to say that we learn through our senses and if they are jumbled, then learning and relating to others is bound to be affected. And it is the seven senses rather than five. Vestibular and Propriocetion (sorry eight, there is Interoception as well) are the forgotten senses. I think they are overdue an awareness campaign of some sort. Look them up, it is fascinating stuff! It is highly likely that his brain is dealing with more input, than a non-autistic brain, he has more information coming than most people. And then sometimes not enough, or not enough that is useful. Either way, maybe it has reached some kind of tipping point, where he can no longer cope. How can he sift through all the input without getting lost and retreating to something he can rely on? Something he creates himself, something he can control, something he can make sense of. This may be the origin of the noises that he makes as well as his recent behaviour.  I don’t know. These are guesses.

In any case, our next step is a Sensory Integration Assessment. Sensory issues are central to autism and it is pretty outrageous that the NHS almost ignores them. I read a description that trying to help a child without addressing sensory issues is like watering the leaves of a tree but not the roots. It is possible to see an Occupational Therapist if your child has severe problems, for instance if they cannot feed themselves or maybe if they are self-harming, These do not apply to Leo. So yes, we have to pay for it.

A visit to the local special school coincided perfectly with Leo’s regression or retreat, or whatever it is. In September Leo will leave pre-school where he goes for 2 afternoons a week and go into a Nursery class of some sort. We need to apply for a ‘statement’ which sets out what support needs to be in place for Leo. It is legally binding. You have to name which school you want your child to go to, so we are looking at all the options.

I went to the special school expecting to think he is not going here. And by and large that is indeed what I thought. The wonderful lady who showed me round spoke of an individual programme that could be created for my child. Wow I thought. Maybe I will change my mind. Every morning most of the children will do a sensory circuit in the gym, sliding, crashing, spinning, whatever is needed  to either wake them up or calm them down and get them ready for learning. Not a bad idea for any child. One class had just returned from horse-riding, the classes do either swimming or riding once a week. A specialist music teacher works with every class. Again, wow.

The Nursery is where Leo would go. It is in a spearate building, adjoining a mainstream nursery, with a glass door dividing the two. The idea is the children will have access to specialist input, but will also have the chance to mix with regular children (oh dear, that is a terrible description, I wil call them mainstreamers). There is a beautiful large play area including some woodland. What could be more perfect?

Well. There was something of a disconnect between what I was told by my guide and what I was seeing in front of me. The teachers seemed tired and disengaged, a couple of them snapped impatiently at the children. The teaching assistants chatted to each other and looked around the room as if bored. It is near the end of term and I am sure these things can be observed in mainstream schools too, so I am not making any definitive judgement about the school. I somehow expected staff in a special school to be more engaged, more gentle, more patient, but they were not. The children in the Nursery were sitting in their seats having what looked like a fairly formal lesson. The all have PECS books just like Leo. One girl had an ipad. None of them appeared to be able to talk. A little boy got out of his seat and was told to sit down. He started flapping his hands and was told to find a picture in his book to say what the matter was. He flipped through the book and gave up. Nobody helped him. Another child was told not to squirm in her seat. She started shouting and was told to ssshhh please. With one exception I did not like the way the teachers spoke to the children. I am well aware that these things may be observed in a mainstream classroom too, and I was not appalled, but I was not impressed either.

Through the glass door, in the mainstream part of the Nursery the children were running around, shouting, and playing. They were noisy and crazy and none of them were told to ssshhh. Again, I am aware I was just seeing a snapshot of the day; the mainstream children may have been on a different timetable, I am sure they have to sit nicely at some point during the day too, but during my visit this is what I observed. I thought about Leo doing his worktime at pre-school while the other children played. And I wondered: do we expect more compliance from children with special needs. In our anxiety to help them fit in, to help them learn, do we apply standards that we do not apply to children who are not having problems? If I was having a really dark day I might ask if we prepare children with special needs, not for life but for some form of institutionalisation. I don’t know the answer. I am not saying that they should be allowed free rein because they have special needs. In fact, I saw three older children outside at lunch time in the playground, with no shoes or socks on.  I would have thought that is not something they should be allowed to decide for themselves, and that footwear must be worn outside. But all of this is why I need to go back, to make sure that I saw what I thought I saw.

There is another, bigger problem and that I realised indirectly. My guide explained that all the children are taught together until year 3 (age 7-8) when they are split into two groups.  She then showed me the Severe Learning Difficulties classroom and the Moderate Learning Difficulties classroom. And that is when I realised that is it. Severe or Moderate. The classroom for children who are autistic and bright but with huge sensory issues does not exist. If Leo were to stay in the school the best he could hope for is to be top of Moderate Learning Difficulties Class. Does there come a point where the glass door no longer opens for children like Leo?

Strange as it may sound, after all that, I have not ruled it out. These last few weeks Leo looks more and more like the children at special school than the children I see coming out of mainstream nursery. I feel more comfortable talking to other autism parents because they understand. Maybe it is the same for Leo, and he will feel more at home in a place where people understand him. I try to imagine where I would rather be if I were Leo. Certainly a class of six children rather than 30 would be easier for him to deal with. At mainstream, the quality of the 1:1 support is crucial. Your child’s statement may say that they need 1:1 support, but it is the school’s decision about who that person should be. My non-speaking son would have to rely on that person absolutely for support. It is quite a scary thought.

The most common attitude among autism parents (not all of course) seems to be: Try mainstream, then special if it doesn’t work out. I am wondering if it can be done the other way round. Have a year in special school, and get that specialist input, and hope that it gives him an extra chance to develop to the point where he is more able to cope in mainstream. There may be a reason why this is not a common approach, however. The danger for me is that the special school staff would only expect a certain amount of development, and may not even notice a child for whom the setting is no longer appropriate.

There are other options: an autism unit attached to a mainstream school, a bit like the Nursery in the special school. It sounds like the ideal solution, but places are limited, and like anywhere, there is no guarantee of quality. The nearest lower school with an autism unit  is a long way from us (30-40 minutes drive) and there are only 6 places for the whole school. The special school also offer something that is tempting in theory at least. Your child can be taught in a mainstream school but by specialist staff. Your child wears the uniform of the mainstream school and in most cases considers themselves to be a pupil of that school. However, they are in fact a pupil of the special school, even though they are not physically present. If I could request this then I probably would, but I can’t. The way it works is that your child has to attend the special school for a time, and then be chosen as suitable.

This brings me to the final option. Home education (gulp). I see why people do it, I really do. If I felt there was no place for my child then I would do it too. I know there is no perfect school for Leo, or indeed for any child. I don’t expect to find one. But I do see why education causes such anxiety amongst special needs parents. For some (like me) home education is the last resort. I can also see why for some it might actually be the first choice.