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.

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What you see is not what you get

My last post was called enthusiasm, but I could equally have called it connection. And I missed out the most significant threat to my enthusiasm for Leo and my connection with him. It is also the hardest to write about.

I get very little feedback from Leo. When I meet other children who are not on the spectrum I am shocked at how much feedback they give – even to people they have not met before. It is lots of tiny subtle signals and ways of being in the world, that you do not even notice, until you meet someone who does not do those things. I notice how I react as well; I automatically supply them with more feedback and it creates a loop of connection and understanding. It does not feel at all nice to say that this is far easier to do with other children than with my own child.

Leo’s little brother is one year old and has started handing us things. He will pick up a toy and pass it to me, babbling at the same time and looking at me to make sure I am really paying attention. I have been astounded by how much these little actions provoke an outpouring of positive feedback from me to him. Thank you Miles, how lovely. I grin at him. He grins back. Do you want it back now. More smiles. More babbling, more checking that I am looking at him. I give him a little kiss and he kisses me back. I know a lot of parents worry that the non-autistic child will miss out, but it can happen the other way round, albeit in a less obvious way.

I can remember two occasions when Leo has shown me something or wanted to share something with me. If you have a non-autistic child these incidents will sound like nothing, but they stand out in my mind as extraordinary events. He dragged me over to his ipad, not because there was a problem, but simply to show me something that had made him laugh. He even looked at me to see if I was laughing too. When he saw that I was, he laughed even more. Another time he clambered all the way upstairs to find me, clutching a picture in his hand. I am not even sure if his intention was to show me the picture, but at the time I felt that it was. These are things that most children his age would do… dozens of times a day? Hundreds? I don’t even know. How much feedback and connection has Leo missed out on because he does not try to engage us in ways that we understand.

In addition he cannot control the muscles in his face very well, so he does not have the range of facial expressions we assume everyone has access to. This is a fairly recent revelation for me. He can’t look surprised, he can’t frown, he can’t look quizzical. It is charmingly referred to as ‘flat affect’. Clearly, just because he can’t display a feeling on his face does not mean that it is not there. It sounds obvious when you say it, but in the real world, in real time, it is alarmingly easy to forget.

What I have realised is that it has more to do with me than with Leo. It is my reaction to his lack of feedback that can escalate the problem if I let it. Taking it personally, assuming he wants to be alone, assuming he does not want to include me. Assuming he does not understand, assuming he does not understand love even. It has the potential to get pretty nasty in a subtle kind of way, and create negative feedback which harms both of us. I have to consciously take a moment when I am interacting with him to remember that what you see with Leo is not necessarily what you get. Or sometimes you just have to pay a bit more attention, look a little closer.

An example: when I collect him from pre-school he does not make eye contact with me. At all. I could get upset about this. Sometimes I do, especially as I am surrounded by all the other parents with their communicative eye-contacty children. But when I look again I see he is making the sign for home (fingertips together in the shape of a roof).  If you look at his face he does not look excited or happy, but he is signing repeatedly. He then waves to the pre-school ladies and dashes towards me…straight past me, out of the door and down the path. He can’t show me he is happy with his face or with words, but he is telling me in his own way. I just have to pay attention.

Here is an example of how a negative feedback loop can intensify and escalate unless you can find a way round it. The other night Leo’s dad had arrived home from work and wanted a kiss from Leo. Leo was involved in something else and ignored his requests for a kiss, becoming increasingly resistant, pushing him away and making angry sounds. Dad tried saying: If you give me a kiss you can go back to your game. This provoked a furious response from Leo. Dad was understandably feeling rejected, and was visibly annoyed. I suggested that presenting Leo with an if/then construction is not something that makes a lot of sense to him. In fact it is likely to make him angry in exactly the manner described above. I suggested trying a first/then construction. So Dad said Leo, first kiss then game. Leo turned his head planted a kiss and returned to his game.

Leo is demonstrating more feedback, but it is intermittent. There are undoubtedly lulls in his development in this area and I have to consciously work on my attitude at these times. Getting enthusiastic about the strides forward he makes is easy. Getting enthusiastic when there seems to be no progress is hard. But it is especially important at these times.

Another difficulty that the lack of feedback can create is that I worry I am not respecting his wishes. Maybe some of the time at least, he does not want me joining in and responding to what he is doing. Maybe it is intrusive. Am I hovering unnecessarily, and in fact preventing him from exploring his environment?  With most children it is pretty clear most of the time whether they want you to join in or whether this is one of those times when they need to figure something out on their own. Yes, if he wants something specific he has ways to let whoever he is with know, but does he want you involved in his activity just for the sake of it? His communication does not yet stretch to that kind of information. The majority of the time it appears that he does not want anyone else with him. I struggle every day with knowing when I should respect that and when I should gently persist, because actually he doesn’t really mean it.

He has only recently learned to nod consistently, but now that he can do it he has a tendency to overuse it. He has days where he will nod to anything and everything. I have interpreted this as a desire to please rather than a lack of understanding – so it is not necessarily a bad thing, and on one level I am quite excited about it, but it can get confusing. I have devised a system of giving him choices of what he wants me to do. Including going away. It is interesting that he rarely opts for getting rid of me.

I want to write more about education, but right now I am confused about what I think. It is certainly on my mind: The first stage of the application for a statement of Special Educational Need will be put in motion next week, and I have just returned from a meeting at the school where he will be a Nursery Class pupil this September. The Nursery teacher did a much better job of hiding her dismay than the Head Teacher did a few weeks ago. We discussed the fact that Leo does not speak, and she asked how he communicates. The method of communication he uses is completely new to her; a book full of little pictures attached by velcro which he presents to people when he wants something. It is known as PECS (Picture Exchange Communication System). I was struck by the fact that no child who uses this system has ever attended the school. The Special School on the other hand, is full of them – PECS books flying around everywhere! The Special School is also full of experts in using this form of alternative communication. I am breaking out in a light sweat just typing this. Have we made the wrong decision? Only a couple of weeks ago I met another mother who explained that her son would have to attend the Special School as he is non-verbal. Is that how everyone else thinks? Is that why there is a lack of PECS books in mainstream school? He can’t speak therefore mainstream is unthinkable…

I am also thinking about the comment the Head Teacher made: If he can cope with the environment then we can teach him.

Am I happy with that comment? At the time it seemed very reasonable and made perfect sense, but I am no longer sure. I will be mulling this over for my next post, as I need to know what I expect from the school and how I can help them as well.  Because education is going to be crucial.

Enthusiasm

In my last post I was struggling with Leo’s apparent regression, and in the face of this development, I found myself questioning everything again. I wondered if I had become a little smug, congratulating myself on ‘doing a good job’ too soon. I knew that it was not accurate to describe him ‘slipping away’, but I almost found myself using those words as the eye contact dropped once more, the screaming increased and the desire to communicate and the ability to understand seemed to be evaporating. The only smiles were to himself as he spent more and more time spinning round.  He was struggling and I didn’t know why.

Not long after I posted, Leo was heartily sick, and continued to bring up the contents of his stomach on a daily basis for the next 14 days. I think he missed one day. He had a fever on more than one of the days, but there was no infection. Just a bug, but it must have felt horrible and even worse, he could not tell me about it. He certainly couldn’t deal with looking at people and follwing instructions and joining in with the grown-ups’ strange little games. Once he was better he went back to himself (his still very much autistic self, but the one we have got to know). Before his recovery Leo would repeatedly put his hands over his ears. Most of the time there was no noise to block out and I was puzzled and concerned. He would look at me as if he was asking for help. It has only just occurred to me that was exactly what he was doing. He has used the sign occasionally in the context of some kind of discomfort or being very unhappy about something. I have been trying to teach him the sign for pain, but he had come up with his own – I just didn’t understand it properly until afterwards. Interestingly, since being so sick, he has used pretend sick noises to indicate intense dislike of something.

I also received Leo’s report around this time. Every 6 weeks I get an update on his progress in relation to the targets which have been set for him. It does not come from the pre-school, but from the Nursery Nurse who is part of the Early Years Team. It seems a very roundabout way of doing things, but that is often the way. It stated: Leo has become resistant to completing 1:1 activities at pre-school, with staff reporting that he is throwing objects and refusing to co-operate. At the time, this seemed like it might be part of his new pattern of behaviour, but I suspected there was an additional reason. The 1:1 ‘work time’ activities had not changed for some weeks. He had the same choices every single time and as I keep saying to the professionals although maybe not always that clearly: Leo likes a bit of change, he rejoices in new things, and develops aversions to things if they don’t change every now and then. That is not to say that he doesn’t like structure, but he doesn’t want to do things the same way each time. This does not fit with the view of autism that a lot of people have, including professionals. People with autism are different from each other in the same way that people without autism are. It can be easy to forget that.

I was very interested to read this in his home/school communication book at the start of term: Leo did not want to do work time today, but I said that we had new activities and he sat nicely. Leo completed 5 activities correctly and helped me put away the items when the session had finished. Told you so.

So: he was ill and he was bored. I think sometimes I get so caught up, I automatically look for answers in the context of autism, and sometimes they are much more mundane. A bored pre-schooler whose tummy was hurting. The only difference is that he can’t tell us that he is bored and that his tummy hurts. Communication is so much of an effort for him that even nodding his head is a big deal. He takes a deep breath and concentrates…then comes up with a little bow that he repeats a couple of times. When I first saw him nod I was ecstatic, but also realised how exhausting it is for him to communicate.

As a side note, I think this is what people mean when they tell me Leo is bright, as the Speech Therapist did yesterday. It is not that he is outstripping his peers with his shape identifying and colour matching skills, it is that he is woking incredibly hard and is often very creative in finding ways round the significant disadvantages he has been landed with. In time I hope he will also find more and more advantages to being autistic, but at the age of three they are largely hidden, apart from learning the alphabet and numbers at a stupidly early age. Still, his ability to get by and to negotiate everyday events is a significant acheivement.

The biggest lesson from this little episode was how quickly my energy and enthusiasm turned to panic. And that could have been more devastating than any regression that Leo might have been going through. By enthusiam I do not mean the jumping up and down and cheering ‘good job’ type of enthusiasm. I mean that I am still interested enough in finding out more about him, about developing our relationship and helping him explore the world. It is what gives me ideas to engage with him, it is what keeps me genuine, and allows me to respond rather than react.

For example: the other morning Leo climbed into his brother’s cot and held onto the sides. Leo does not really dance, but he responds to music quite strongly, whether positively or negatively. So I took a chance and put his little brother next to him and turned up the radio. We all jumped around for about 10 minutes, Leo tolerating his brother next to him (this a a big deal) and laughing and looking at me (also a big deal).

If I am not enthusiastic, then I am not ready to play. It sounds so easy, being ready to play, but it is not. I have to be tuned into Leo, and alert for possible ways for us to connect – and keep it going which is the hardest part. Sometimes the connection is so fleeting and is lost in microseconds.. I have to bear in mind that what would engage a non-autistic child will probably not work with Leo. I have to be prepared to prioritise this over the other things I need to do. Enthusiasm is essential, not an added extra.

There is  another potential threat to my supply of enthusiasm,and that is organisation. There is a lot of organising to be done when you have a child,  and this is  particularly the case when you have an autistic child. For example; Leo is using pictures to communicate, and I have to stay on top of these, editing and creating new ones on a regular basis, and keeping an ever growing library of pictures in stock. I am not very good at this type of thing, and at times I feel I am slowly failing a tedious craft project that I never volunteered for in the first place. It is easy to get bogged down in the organisation of it all, particularly if like me you struggle with this kind of activity, and miss oppotunites for connection.

This post was meant to be about our choice for Leo’s education when he leaves pre-school this September, but what was meant to be a side note has taken over the whole post.

Briefly then: Julian and I had a joint visit to the Special School and then to the local mainstream the next day. To my amazement (I am still amazed actually) Julian thought the Special School was wonderful. The activities were not conventional classroom activities  – in one class they were playing skittles for instance, and I can only think that is what pleased him so much.

After visiting the Special School, we had some pressure from the Early Years Team to decide on special vs mainstream. I am still confused as to why this was exactly, but it seemed to be to do with the timing of applying for Leo’s statement that would allow him to receive appropriate support. In reality, I don’t think there was any pressure on us, only on the team applying for statements, but we were visiting the school on a Friday and had been given a deadline of Monday, so it is fair to say it felt like pressure at the time.

The mainstream school was less welcoming in that the Head, Mrs C had not been briefed about our son, and when I mentioned autism she seemed to flinch slightly. She was very controlled and spoke very carefully, but we both got the impression she was trying to steer us away from her school. She did say: If a child can cope with the environment then we can teach them. I think there is a bit more to it than that, but it is a good place to start.

I had explained to Mrs C about Leo’s communication and how he uses signs and a PECS book to communicate. She had not heard of this before. I also used his difficulty nodding as an example of how hard things can be for him. She looked decidedly startled. When introducing us to the SENCO she explained: Leo is autistic and is very non-verbal.  After meeting the SENCO, Mrs B, we made our decision. Mrs B was not startled at all. And despite being in the middle of a messy art lesson, she was still very interested and completely convinced that she could help Leo venture into mainstream successfully. So that is what we will do.

I am still learning what a complex question mainstream vs special really is, and it undoubtedly deserves a post of its own.

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.