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.