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.

worst case scenario

Warning: This post contains some traces of denial, in spite of my intentions to have dealt fully with this issue in previous posts.

Take it one day at a time and don’t look too far ahead. Good advice for any parent, especially an autism parent. It was not what I wanted to hear, however. I wanted predictions. I wanted to be told, of course he will talk, of course he will go to mainstream school. I wanted to know that he would be indistinguishable from other children. Really I just wanted him to be happy, but I saw all those things as prerequisites for happiness.  Once I had that reassurance I would be able to concentrate on helping him in the present without all this worry about the future.

When the Speech Therapist told me about non-verbal children who go to school with their books of communication pictures strapped to their bags, I  nodded and smiled, but I was horrified. Why was she telling me this? And saying it like it was good news? She must be crazy.  Not talking was not an option. I was not ready to make the leap required to imagine that these things might become a part of my world. In a very short space of time I have become completely at ease with these things. We are absolutely rocking picture communication, as well as makaton signs and I would not be without alternative communication. To me it’s not alternative, it is communication. My son can tell me stuff – it’s awesome. In fact I sometimes forget that other parents don’t have to regularly spend an evening sorting through laminated pictures of people having baths and stories and brushing their teeth.

But I have been here before, or somewhere like it. I should have known better than to go into a panic about imagined worst case scenarios. My daughter has Hypermobility Syndrome (Her diagnosis is actually EDS Type III but people tend not to have heard of that). By the time she was diagnosed I had heard about people with EDS ‘ending up’ in wheelchairs. I hate that expression, it sounds like once you have ‘ended up’ in a wheelchair nothing further is possible. I was determined that whatever else happened she would not ‘end up’ in a wheelchair. It was the worst that could happen. And it would not happen because I would simply not entertain the idea.

Well I was wrong on both counts and I even find it slightly hilarious that I used to think like that. She uses a wheelchair almost all the time, and it is by no means the worst thing that has happened to her. The last few years has been like watching her body crumple from the impact of an ultra slow-motion crash with everyday life. She downgraded her dreams one by one, until even the downgraded versions were ridiculously out of reach. It would take her the whole day to get up and dressed. To my mind the way out of this was positive thinking; set some goals, work out the steps to achieve them. I became increasingly frustrated as she refused to engage with this version of how things would go. She would become animated about new ideas for how to style her extraordinary hair, but new ideas for college courses left her flat. Eventually she said: I am already trying as hard as I can. have to live my life now, and I want to enjoy it. I don’t want to spend my time thinking about a future that may never come. And my favourite quote: it takes all my energy just being a bum.  I didn’t like it but I had to accept that taking it a day at a time worked for her in its own way. She is certainly one of the most vibrant people you are ever likely to meet, and she has carved out a life that is full, joyful, and very different from what either of us imagined. I thought I had learned a valuable lesson from all of this, but it seems I had to learn it all over again for Leo. Hopefully I have managed it a bit quicker this time around.

I faced some of my fears for Leo when we visited a garden centre at the weekend. Daddy was looking at greenhouses for an extended period and we were trying to entertain ourselves, first with the water features (a bit too fascinating – careful Leo I don’t fancy paying for a broken one), then the micro pigs (I loved them but Leo was firm in his total lack of interest). Finally we compromised by looking at the carp pond. I heard a voice behind us, very loud and confident, sounding as if he was in the middle of a conversation with somone: Hello my name is Edward and this is my mother Genevieve, what is your name? It was a young man aged between about 16 and 19. It took me a few seconds before I realised he was talking to me. He wasn’t making any eye contact so I still wasn’t sure I was supposed to answer. I hesitantly introduced myself and my sons. He made some more comments and asked some questions; do we have pets, does Leo go to nusery, does he have any nicknames? He looked steadfastly at the water the whole time as his mother stood alongside him. She smiled and made some friendly comments of her own. I was impressed by the way she gently supported and guided him, whilst letting him be himself. I hope I am not being too presumptous by thinking that he was probably autistic. We had a pleasant if unconventional conversation until Leo became agitated and we had to leave. Putting aside the issue of speech, this was my worst fear, a son who was visibly autistic into his teens. And yet he seemed happy, his mum seemed happy. They looked like they were having nice lives.

In my ‘about’ section I say that I do not know what severe autism means. The reason I say that is that I think it is possible for someone to be severely affected without that being obvious to others. However, when people ask if Leo is severely or just mildly autistic I think I do know what they mean. It’s about visibility. When he gets older will you be able to tell? I still don’t know. But I do know my goal is not to make him fit anyone else’s idea of normal at the expense of his happiness and ease with himself. I want him to be happy, I want him to make his own choices. I want him to live a life that has meaning for him. That may be a conventional get a job, get married kind of a life or it may not. These are vague goals I admit, and I hold them for him very loosely. But the only way to get there is a day at a time.