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.

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.

Speechless

I have been gearing up to write about Learning DIfficulties, but I can’t quite bring myself to start. I recently learnt that in addition to autism, my son has a chromosomal abnormality (microdeletion 16p11.2) which is strongly associated with Learning Difficulties. I know very very little about this huge topic. Is a learning difficulty (you see how I don’t even know whether or not to use capitals) simply anything at all that impacts on learning, in which case we all have them, so why worry? And stop making such a fuss and get on with it (is the possible implication). Or does it have to involve a low IQ, bearing in mind that IQ tests are not the only way to measure intelligence and that there are different kinds of intelligence. Is autism a learning difficulty? For most people it certainly impacts on learning. And yet once obstacles to learning are removed it is often possible for autistic people to learn exceptionally well. I think it is best to leave it there for now as I feel I am already getting into trouble.

There is learning and there is also teaching, but the two do not always go together. My son is three years old, and has not yet learned to speak. Does this mean we have to teach him? How do you teach someone to speak? Most parents do not have to worry about that at all. You read stories, sing songs, chat away to them and eventually they start speaking back to you. Hooray, job done, you are a good parent! To be honest, it seems to me that even if you don’t do those things, the speech would probably come along more or less when it should. Leo is non-verbal (actually I think technically he is classed as pre-verbal which sounds a bit better but is not), and I have received and put into practice a huge amount of advice from professionals, fellow autism parents, books and the internet. I can turn any activity into ‘ready steady….wait for him to look or make a sound…..go’. Likewise turn-taking: ‘Mummy’s turn…Leo’s turn’. Turn-taking is important because it helps with attention and without attention you don’t learn. Turn-taking is also the basis of conversation. I can see the logic in all the activities I have been advised to do, it all makes complete sense. I sing songs whenever possible (singing is sometimes easier than speaking for autistic people) ,sometimes I sing a commentary on what we are doing. He tends to look at me as if I am a bit bonkers when I do that. I listen for any noise that could be a word and repeat it back to him as if it is a word (bearing in mind there are barely any of these). I put things he wants out of the way so he has to ‘ask’ for them. I do things wrong deliberately to provoke a reaction, I pretend to forget things: ‘where are the spoons, I can’t remember’. I say what we are doing: ‘up the stairs, we are going up, up, up’. I slowed down my speech and used simple two word sentences, I repeated sounds in an exaggerated way: ‘p,p,p,pop the bubble’. Actually I have stopped doing these last two. The more I read the writings of non-verbal autistic adults the more I want to talk to him ‘normally’ and feel it is important to do so. To do otherwise always felt forced to me and I feel quite liberated in abandoning some of the techniques.

Leo has certainly done a lot of learning, in the last few months. Whether or not this is down to any of the teaching he has received is anyone’s guess. He can now imitate physical gestures very well (imitation is essential for learning speech); he finds it easier to pay attention than he did; he can respond to questions by pointing to or signing the answer. The impact on his speech has been almost zero. Even making a deliberate sound is still so hard for him. He can roar on request but that is it. He was just as unable to blow out the candles on his cake aged three as he was aged two. The books recommend using straws to blow through, or kazoos, or party blowers. The problem is that he just can’t do it. Like I can’t do the splits. Someone could demonstrate how to do the splits, and I would be able to see what they are doing. Just put your legs like this, it’s easy – see! I still would not be able to do the splits. I choose this as an example because aged about eleven this was my dearest wish, and I was highly motivated, but my body simply would not co-operate. I feel it must be a bit like this for Leo when people try to demonstrate the mechanics of speech to him. I also worry that constant repetition of things he cannot do is teaching him his failure to learn the skill, that the failure is somehow getting grooved into his brain. And that with each attempt the failure becomes part of him. Even if that is wrong, I feel we need something different, a new path.

I used to ‘hear’ him say a word or two sometimes. Yogurt, dog, dad, car, go, wow, down, out, book, cat, again… I think there are more. It is not just me. Several professionals have also told me excitedly they have heard a word or a word attempt. I don’t hear them any more, because it is too hard when he does not say them again. To make speech the be all and end all could easily end in heartbreak for both of us. At one point I had the attitude of; ‘he will speak and that is that’ but I have realised it is something I do not have control over. He may well speak at some point. He may not. I don’t know. What is certain is that he needs a way to communicate. A better way then the 20 or so signs he currently has. Better even than the pictures that we are compiling with the help of the Speech Therapist. He needs to express himself using words. This may be a voice output device, it may be typing. He will need to learn to read. That is an exciting thought. He already loves letters and knows the names and sounds, upper and lower case (without anyone teaching him as such). This is a very different path to speech but it could be just as wonderful. It suddenly seemed important to say this to him: ‘your words are stuck in your head Leo, but I know you can understand me.’ I got very clear sustained eye contact when I said this to him. He looked at me for a long time and then carefully touched his mouth. I will help him find a way to unstick his words, but we will not limit ourselves to speech alone. I have a feeling once his words are unstuck he will have a thing or two to teach us.