Screen Time

Too much screen time will harm your child’s development. I have heard this from more than one professional. They usually add, that although this is true for any child, it is especially the case for autistic children. I agree. In fact, I am constantly trying to find the most effective way to limit screen time for the whole household. The biggest obstacle to that good intention is that a screen equals a peaceful and sometimes blissfully happy child. When you’re used to seeing your child upset for long periods of time,and when you are emotionally drained after navigating a distress-a-thon,  it can be particularly hard to resist. I would heartily recommend a screen free hour before bed. The initial hardship surprised me, but when bedtime suddenly became so much easier it was not very hard at all.

A few years ago I had a lesson in what screen time does your brain. My daughter has seizures and was admitted to hospital for tests. She was hooked up to a machine that measured her brain activity. It was displayed on a monitor at the end of her bed, in real time. It was fascinating to watch the readout change depending on what she was doing. When she noticed someone come into the room there was a burst of activity on the monitor.  When it was someone she knew well the activity was more pronounced. Conversations produced an active, wiggly line. Singing made the graph so thick with lines they looked like blocks. Laughter took the line to a high peak. When she turned to watch the TV however, the lines indicating brain activity immediately flatlined. It would happen even if she just glanced at the TV for a few seconds in the middle if a conversation. A similar effect when she looked at a laptop screen. After seeing that I wanted to never watch TV again. Certainly I didn’t want to let my children watch TV anymore. I did though.

I have always loved TV, I even like to have it on just as company, I find it reassuring. I love to be completely absorbed in a drama series, to find new comedy, and I have learnt a lot from TV. I thought Science was boring and that Maths was irrelevant until TV brought them to life for me. I do love it a little less now, and I make it more of a conscious decision to watch rather than an automatic habit.

Leo seems to have inherited, or learnt, my love of TV. From four months old he couldn’t take his eyes off it, and I reassured myself with the thought that it was just colours and lights to him, and he wasn’t actually watching it and therefore it wasn’t doing any harm. I was probably wrong, and I probably knew it too.

But Leo has learnt things from TV too. Tree Fu Tom taught him to jump. It is a very irritating but well-intentioned show that tries to get kids to move as they watch. For Leo it did more than that. All the other kids his age could already jump but Leo , who has great trouble with copying any movement was still struggling to co-ordinate the move. We tried to teach him and he got more and more annoyed with us and himself. Then one day Tree Fu Tom said jump and he jumped.

That brings me to another concern about screens; that they make children (and adults) sedentary. And on follow all the things that a sedentary life brings. Autistic kids have enough challenges without that on top. Leo however, tends to watch TV ‘on the move’. He runs in circles and jumps up and down (now that he can) and is generally very active. So I am able to let myself off the hook on that one, to some extent at least. More worrying for me is that it is a time thief. What could we have done instead of watching TV? Most of the time, almost anything would be better.

So, given my ongoing battle to limit screen time, it was an interesting decision to buy my autistic son an iPad for his third birthday. Well, we decided on an iPad, it could be any tablet device thing. I sometimes regret it, and I definitely regret installing a YouTube app, but I think the benefit/detriment balance is at least even. No doubt there are professionals who would disagree. There are days when I disagree with myself.

The biggest positive that the iPad has given me is the knowledge that my son is not developmentally delayed. Officially he still is, but I know it’s not true. Within days of having the ipad he was performing tasks he struggled to do in 1:1 sessions. He was following complex instructions, completing puzzles and identifying words with ease. I would watch over his shoulder, expecting to have to help him out, only to find him moving on to the next thing. I don’t know if it is the removal of social demands from the equation that makes it easier, or if he finds the screen so compelling he is able to concentrate without being distracted. It all started to fall into place for me:He understands, But he finds it hard to concentrate, to stay on task. This technology can help him to do that, but more than that it has changed my attitude towards him. I no longer question his potential to learn, even on bad days.

It has also helped me to see areas where he does struggle. Putting things into categories was hard. playing ‘spot the difference’ is still a challenge. Using a screen to try to learn those new things is so much better for him. He is just more open to trying things and making mistakes without so much distress.

It is a useful tool to help him cope in situations where he would otherwise not cope, usually very noisily. We sometimes get disapproving looks, such a young child with his head stuck in a device. But we would get them if he was screaming his head off too (the older a child get the less acceptable it is for them to publicly not cope). I try very hard not to just hand him the iPad if I’m worried he won’t cope. It is important I think, to wait and see what happens. I don’t want him to miss experiences because I assumed it was too much.

It also helps him to wind down after too much input. After school is prime iPad time. Sometimes he is on it too long. And the longer he is on it, the more resistant he is to doing other things, and harder it is for me to take it away from him. And I need to keep an eye on myself, as it is easy for me to justify it in terms of him needing it to wind down. Whereas, in fact maybe It is me who has a need for him to be occupied  so that I have time to cook dinner or tidy up in peace. Or I just want the peace.

It has helped him to share things with us. He wants to show me things on the iPad. Not often, but it happens more with the iPad than any other context.

Until recently we also had a communication app installed. It has only been uninstalled as he will soon be getting a dedicated communication device with voice output. It is quite different to the app, so we don’t want him getting too used to the app, which was designed for learning disabled adults rather than autistic children.

During the time we did have it, I had some quite mundane and yet extraordinary ‘conversations’ with my non-speaking son. He woke up one night and was able to tell me that he felt scared and that he was scared of a monster. Every morning I asked him how he was, and using the icons on the screen he would tell me how he felt. Nine times out of ten the answer was ‘happy’, but one morning the answer, was ‘cold’ and he went on to say he wanted to wear his dressing gown. We looked at the hobbies page and he told me that his hobbies were reading books, watching films, running, cooking and fishing. This last one made me cry. He seems so unaware at times, ‘in his own little world’. Fishing is his Dad’s hobby, and it made me realise he wants to be like his Dad, even though at the time he was practically ignoring him. But he just wanted to do and be the same as his dad, just like any three year old. The insight was bittersweet, as it made me realise that I didn’t really know him that well.

Now, the YouTube app. I have fewer nice things to say about this. I should remove it, but it’s like Pandora’s box. The evil has now entered the world and I can’t get it back in. He goes through phases where he returns to his educational apps, but currently his first choice is watching the weirdest things he can find, involving as many of his special interests as possible. There is a whole world out there of people opening toys on camera, filming not very good stories using a bizarre mixture of toys. And covering everything in playdough. The best thing I can say about it is that it has been interesting to me to see what he finds interesting. With no speech he has only limited opportunities to tell me what he likes and doesn’t like. The exact point where he gets bored of something is fascinating. But I’m pretty sure his brain waves are flatlining throughout most of this. And then sometimes I’m not so sure. Seeing him recreate and elaborate on some of the scenes he has watched on YouTube makes me wonder if it is doing more good than I give it credit for.  Sounds like not very much, but for a child who finds copying so hard it is very much indeed.

So the fairly predictable conclusion is that screen time is like most things, it can be good in moderation. But how you find the exact balance that suits your own child is not so predictable. There are perhaps more benefits and more dangers for autistic kids – everything always seems to be ‘more’ for autistic kids.

I don’t want to downplay the potential for harm – I have too clear a memory of that brainwave flatline for that. But, it would also have been harmful for me to continue to assume my son was less capable than he really is. It was not just devices and screen time that made me realise that, but they played a pivotal role. And will continue to do so. Apart from the hour before bedtime.

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.

Why it is harder parenting an autistic child. And sometimes it isn’t.

How much harder is it to parent an autistic child? My initial reaction is to shy away from this question, turning it around to ask ‘how much harder is it to be autistic?’ There are lots of reasons for this. Some of them are as follows.

I never want my son to get the feeling he was a burden or a problem. He is not. I also don’t want to give the impression that this is some kind of tragedy (perhaps because that is what I thought initially, even if only for a few horrific days).

Perhaps even more than that, I don’t want to live the kind of life, where I am thinking if we keep going and keep working and striving (plod plod plod) we might one day approach something that maybe looks a bit like normal  – if you put it in the right light and kind of squint a bit.  If I have the choice then I will choose accepting, embracing (and even celebrating) what is. It is not quite the same as saying it’s all fine, and it doesn’t rule out development and discovery. But it does save my sanity. I need to be happy now, and not live in an imaginary future that may never come. I want to have fun.

However, I also know that the mental and emotional, and physical health of the main people looking after an autistic child are crucial. If they are struggling, the child will struggle too. And it is harder. The fact that my (apparently) non-autistic 20 month old is an absolute breeze, has made me realise that. I push him around in his buggy and he just looks around at everything, quite content and taking it all in. This would have been unthinkable for Leo.

Number One hardest thing for me is other people (sorry other people). It is not so much the stares or negative comments – I have thankfully experienced very little of this, although I would like to take a moment to share my technique for dealing with it. I am not really into t-shirts or autism cards explaining the issues. Nothing against them, just not for me. Instead I calmly meet the gaze of the person staring at my child. It can take a little while for them to realise I am looking at them looking. I used to smile, but now I maintain a neutral expression. I am trying to say – I see you staring at my child. Now I am staring at you. Not very nice is it? It works for me, and diffuses my anger at the same time.

The bigger issue for me is the ‘all kids do that’ line. If you have an autistic child you will be very very familiar with it: well that’s true of any child. I want to say great, so autism doesn’t exist and I’m just making a bit of a fuss.  You would not say to someone who has a parent with dementia well, we all forget things sometimes.

The all kids do that’ line is an utter dismissal of you and your child’s challenges, even if it comes from a well-intentioned place – and it usually does.  You try again to explain why it is harder and it still doesn’t sound like very much, and you end up feeling bad because suddenly you realise you are trying to convince someone just how awful your kid is. So I would say that that is probably the number one reason why it is harder: the explaining. It is emotionally draining, especially when you feel you haven’t got your point across.

If you have a child who doesn’t sleep or a child who is violent to themsleves or others, that would probably take the top spot. I don’t have that, but the night terror episodes we had with Leo a few months ago were a reminder of how sleep deprivation can destroy you in just a few nights. Two in my case.

Number Three. The worry about the future – much as I try not to, and much as I want to live here and not dwell on the possible futures that await my son – it happens. The casual words of others, a photo where he I judge that he looks ‘different’, can set off a vision, a thought or even a dream that takes me there. All of the things that most parents (not necessarily correctly) assume their children will achieve or experience are not given or taken for granted. When you feel like this, even the presence of typically developing chidren in all their sophisticated cheekiness, can be painful.

Number Four. The feeling that your child is failing at childhood. I don’t actually believe that is true, but I feel at times that is the message. He has to be taught how to play, how to be a child. How to have imagination. To do all the things that other children find natural. He can’t enjoy funfairs or parties. He does not get invited to parties, but if he did the fallout from getting him through it would probably not be worth it. And in a way that is fine – he is not a party person, so what? But for mum and dad it can be very hard.

The other day my partner asked so do the mums at nursery not really talk to each other then? I had to explain that of course they do – there is a whole parallel universe of play dates and parties and bike rides that is going on that neither Leo or I have any part of. I have got used to it, but that is a huge deal in the life of a parent. Maybe others manage it better than I do. When I do start chatting with other parents I am slightly bemused by the things they talk about (themes for birthday parties?) and realise I can only talk confidently about statements, 1:1 supports and PECS book vs ipad apps.

The other day we were waiting outside nursery and a few of the children were running around chasing each other. Leo loves chasing games. I said you are watching the chasing. Do you want to play too? He nodded (nodding is hard for him, so a nod means a lot).  He started to run round, but in the wrong direction…and instsantly crashed into a little girl who fell, cried and went to her mother for comfort, while I apologised and got Leo to sign ‘sorry’. The mums then agreed that running round was too dangerous, and told their kids not to do it any more. Leo continued to run round on his own, while I tried in vain to get him to stop, until the doors opened. I don’t even think anyone thought it was a big deal, or that Leo was a horrible boy or anything like that. But I was upset and it affected my day even though I thought I should just forget it. Since then, the chasing games have returned, but Leo has not joined in.

But I think that goes some way to explaining why it is harder. You have to deal with lots of little things which on their own are not a big deal, but altogether they use up a lot of energy.

Here are a few of them, off the top of my head. We have to work out how to fund the ipad app Leo needs in order to communicate – and how to get the assessment that will advise on which app is right for him. We have to read through 30 pages of his statement in order to know what should be in place for him. We have to collect him 5 minutes early as his distress is too great when waiting to come home. We have to rephrase everything to not contain the word no, as this causes him to crumple (yes I know he has to learn, but I can tell you he is not ready yet). He finds yes/no questions difficult to answer, so we don’t know if he has communicated what he intended to communicate. Open questions are impossible as he can’t speak, and his commuication devices do not allow for sophisticated answers (yet). We have to deal with his inability to accept help. To guess why he is crying. We have to deal with the confusion caused when he does not respond to well-meaning adults in the expected manner. We have meetings and phonecalls and appointments, which are mostly about all the things Leo can’t do. We listen to him apparently come out with a word, only to be unable to retrieve it again. We can and do deal with all this. But dealing powers are not infinite and it makes you vulnerable to overreacting when something minor does not go the way you hoped.

Safety should probably be higher than number five, but for me that issue is not quite as overwhelming as it used to be. Great improvements in Leo’s ability to respond to his name and his own desire to check where I am, have made outings a little easier. Nevertheless, he finds it hard to walk. He has two modes. Running and stopping. Not a lot of walking goes on, and it doesn’t feel safe. You may want to tell me all kids are like that, but a quick glance around and I am amazed at the way other kids are moving. Leo also seems to have an instinct that leads him to bump into people rather than avoid them (see incident above) and he falls over about once every 2 minutes.

Going into town is a big deal.  The irony is that Leo loves walking (running) into town and often asks to go (using pictures). My heart sinks every time. It is so much easier when he isn’t there. But when I do the sensible thing go without him, while he is at nursery, it feels horrible. Not only do I know how much he would love to go, but I miss him. Even how easy it is makes me sad.

It is no good denying it is not harder. It is. I have days when I realise I am mentally and physically bracing against what the day will bring.  It could so easily turn into a spiral of misery that makes everything harder. The basic building blocks of childhood do not always come easily and it can be hard to have fun in simple ways. Leo loves to bake, but the whole process causes such distress that it is very hard to see how it is fun for him.  The irony is that you can get so caught up in problem-solving mode that you are in danger of missing the fun that was right in front of you.  When he does find something that amuses him, he has the ability to extract the maximum amount of enjoyment out of it. The fun from a pair of too-big wellies lasted a whole afternoon – no distress whatsoever.

Leo having fun

low average

I have not written about Leo for the blog in a while, but I have been writing about Leo; listing all the ways he finds it difficult to be in the world, and then re-writing it all again. All this is in preparation for the start of his school career. It’s not even proper school, just nursery class, but it has been necessary to have meetings where we go over and over all the things he can’t do. The aim is that he will get the appropriate (ie highest) level of support when he starts in September. When I read through all the reports and summaries and advice and assessments, I don’t recognise much of my son in there. Only a couple of minor points are actually incorrect, but despite its accuracy, it just doesn’t sound like Leo to me.

Now I watch Leo sit nicely with a nice lady and count plastic teddies into a plastic bowl. It has become a familiar sight for me over the last year. The nice lady is speaking slowly and enunciating very clearly as Leo moves the teddies into the bowl ‘one…two…three…four…oops too many, we need FOUR teddies.’ Leo looks around and makes his familiar aaah sound, flat yet piercing at the same time. It signals rising distress. She has lost him; he gets up and wanders away. She calls out to him ‘Leo sitting…’ What I have learnt in the time that I have been watching him count plastic teddies is that it doesn’t really matter whether or not he realises that he has overdone the teddies this time, or if he has forgotten what he is doing, or if he has been distracted by something else in the room. It doesn’t really matter for two reasons. The first is that the primary purpose of ‘worktime’ as it is known, is not so much learning as it is for the child to accomplish the skills of sitting nicely and complying with the nice lady’s agenda. The second reason is that he is bored with plastic teddies so he just doesn’t care about getting it right any more. And who can blame him.

When the nice ladies (autism specialists of different varieties) first entered our lives I was very excited, very grateful, very enthusiastic and determined to be a good autism parent and learn from these experts who had seen so many children like my son. I was also very isolated; it had become very clear that most parents are on such a different journey that we don’t find much of the common ground that parents usually uncover. So the nice ladies were company as well. I thought that not only did they ‘get it’, they were bound to know more than me about all the autism stuff. It never occurred to me to question what I was told: You need to simplify your language to a 2 word level when speaking to Leo. You need to show him pictures so he can understand you. Leo needs to learn to follow the adult’s agenda. Leo needs rewards and motivators to stay interested in learning. Some of this may work for others, I have heard great things about all these tactics from other mums. But it wasn’t quite right for Leo – or for me. A quickly put together visual schedule can help when he is really unhappy about doing something, but that’s about it.

I continued to half-heartedly stick it out, even when most of it started to sound wrong and each piece of advice dragged me down a little further. Never mind that no-one is asking non-autistic children to count out plastic teddies – they are allowed to simply play. But as Leo’s play is deemed repetitive and ‘not appropriate’ he has to work instead.

I have been on my own journey since the arrival of the nice ladies (who are genuinely very nice, no sarcasm there). I have gone from fearing autism; to facing it, but fighting it; to accepting it in a way that was more like surrendering to the enemy, than finding any kind of peace. Finally, after a lot of reading of the writings of autistic adults and children (it is lucky I am a fast reader) I have realised being autistic is an okay thing to be. Not easy but very definitely okay. It sounds so embarrassingly simple, and I feel slightly ashamed that it was so hard to do, but once I had made that shift, everything made sense again. I had a renewed sense of excitement and curiosity about my son.

I do still have to deal with the ghosts of my fears, on an almost daily basis. If I don’t keep myself topped up with regular doses of autistic wisdom, I find the ghosts have crept back in unnoticed, and before I know it they are swirling round me again, scaring me, paralysing me.

I sometimes forget that the nice ladies did not go on this journey with me, and this was demonstrated to me recently.

We have discovered that Leo can read. The extent to which he can read is not yet clear, but his interest in words is. He is still only three. I wanted to tell the nice ladies about the discovery. In fact it was not a completely new discovery – I already knew he could read a few words, but it was different now because he had proven this unequivocally to a professional (privately hired by us). I felt confident that I could share the news. Ten minutes of awkward (and almost tearful) conversation followed. The nice lady could not comprehend what I was saying. I described Leo correctly matching words to pictures with no assistance (and these were words I had not drilled him in or even pointed out to him). She looked sorry for me and said quietly. ‘Amy, you do realise that’s just matching?’ I was confused. Was it just matching?

I spoke too fast: ‘Yes, matching words to pictures and pictures to words yes, he must be reading them, I mean I know he doesn’t know phonics yet but…it’s more than just matching a word to a word.’ She failed to understand me, and I failed to understand that she did not understand. Her expectation of Leo was that he would be matching a word with the identical word – that also had a picture on it. It took several tries to explain that there was a grid of six pictures and he was handed a word and told find the same. And he did. And then did it again and again with different words. When she finally understood she just said quietly ‘oh that’s really good, tell the school’.

It was genuinely a shock to me to find out that the nice ladies and I are not on the same page. in fact we are not even on the same book. All those ‘clever Leo’ comments did not really mean clever Leo at all. I stay with the ‘worktime’ programme, because I think it may be useful in helping him to remain in mainstream education. After all, it doesn’t matter what his reading level is if he’s lying on the floor screaming every day. On reflection, lying on the floor might be ok, but the screaming probably isn’t. I should probably point out this isn’t something he does a lot, but it can happen. But sometimes I wonder if the nice ladies see compliance as essential for his life in a different way. Or for a different kind of life. He will always have professionals looking after him so he needs to be easy to manage?

Ironically I had tried to do a bit of word to word matching with him and he had done a couple and then resisted – with some force. I had decided ok, maybe he’s not ready. I now know it was too easy, and he was bored. Instead of taking it down a level, I needed to take it up.

One of the hardest things in Leo’s education is and will be the fact that he cannot ask questions. He can comply with instructions and indicate correct answers (when he is in the mood and sufficiently interested). He can also use his communication book to say I want…sandwich, biscuit, paints, outside play and so on. But he cannot tell anyone what he wants to learn about, or ask why is it this way? What would happen if… Or even: I don’t want to go there, or: no I want to do it this way. He can growl and shout and shake his head and screw up his face to show his disapproval, but we can’t have any kind of discussion about it. When he wants to go to preschool with no trousers on I can tell him why he needs to have trousers on, but he can’t tell me why he thinks it’s fine not to. I would still win the argument, but we need to be able to have the discussion. A book full of little pictures of bits of food and toys is not going to cover many situations more complicated than wanting a biscuit. The problem for the nice ladies is that Leo wants to follow his own agenda, but from Leo’s point of view, it is actually very difficult for him to set his own agenda in even the smallest way. His opportunities for any kind of meaningful choice are very very limited, even taking into account the fact he is only three.

I try to get round all of this by imagining what he would ask if he could, giving voice to what he might be thinking or feeling, and generally talking to him about as many things as I can think of. It may not be hitting the mark, and at times it feels presumptuous. And sometimes I am too caught up in my own busy-ness to remember to do it wholeheartedly, but I think it is better than the alternative of no voice at all. I do have to be mindful of opening with ‘Leo look at this fascinating thing’ (that I think you should learn about). Starting with whatever he is doing/looking at or that you know he is interested in, is a much better starting point. But if he could write then I wouldn’t have to guess any more. And he could tell me when to shut up.

Another bit of irony in all this teaching Leo to follow someone else’s agenda, is that he loves to learn. The private speech therapist, who interestingly is a little less nice than the usual kind of nice lady, has managed to find a pace and a level that challenges him but also allows him to be successful. His face lights up when she comes in. He doesn’t need rewards or motivators – he is simply motivated by learning. Particularly reading. I wonder if he knows that this is a way for him to communicate.

I bought him his bright red book bag and sweatshirt for nursery this week. When he saw them he grabbed them and ran round the house, refusing to let go. He even took them to bed. He knows about nursery, he wants to go (he has had a handful of visits and now tries to take a detour to the nursery entrance every time we go to preschool). He wants to learn, he wants new stuff. I have tried to ensure that the school are as enthusiastic about having him as he is about going. I try to balance every ‘he can’t’ with a ‘he loves’. I always feel like I am jeopardising his level of support when I do this.

The Educational Psychology report has him down as ‘low average’. Apparently this is wonderful news – a non-verbal autistic 3 year old scoring in the low average range is pretty great so I’m told. It seems a rather nasty label to me, but it isn’t really my concern. It’s not that it’s necessarily wrong, but it just isn’t helpful. He doesn’t need to be clever; the point is not to work his way from low average to average average, or high average or whatever. I doubt he would learn much from that experience anyway. My wish for him is genuine learning that has meaning for him. That he learns how to ask questions and not just answer them.*

*this last sentence is stolen from my daughter who came out with this piece of wisdom about schools and their shortcoming at the age of nine: Schools teach you how to answer questions, but they don’t teach you how to ask them.

What helps. What doesn’t.

My son is autistic. I embrace that, and I also want to help him live more comfortably in the world. There is not any one answer to how I will do that, but at least I know what my intentions are. I also know that I need to presume competence, which is not the same thing as having high expectations. It took me some time to understand what it is and why it matters. I still have some trouble explaining it, but here goes….It is knowing that the fact that Leo is autistic makes it more difficult to assess what he understands. He may well understand things that he appears not to – but for a variety of reasons he is not currently able to show this in ways that we can understand. In a way, that is what autism is all about. Expressing yourself is hard. It does not mean that you have nothing to express.

It was not an easy journey to get to that point. I thought autism sounded like something you would fight and overcome, rather than embrace. Acceptance is the only choice for me.  If Leo were to consistently receive the message that I was trying to change him, that he is not okay the way he is…that could resonate throughout his life. It is also much more pleasant for both us on a day-to-day basis. Acceptance is not a call to inaction. It is simply a starting point for working with Leo so he can find his way in the world.

But he also has another diagnosis: 16p11.2 microdeletion. The numbers refer to the place on chromosome 16 where genetic material is missing. This can be passed on from a parent or it can happen randomly. The diagnosis is in addition to autism, and this can be confusing, as when I try to explain it, it can sound as if it is part of it the autism diagnosis, or the cause of it.

Rather than a list of symptoms you get a list of risks. Most of them will not be experienced by people with the microdeletion, but compared to the average person they will have a much higher chance of having one or more of the things on the list. It gives you some statistics, but as the abnormality was only discovered in 2007 there is not a lot of data to go on. I try not to take too much notice of the numbers in any case; they don’t tell you anything about your child. The list includes but is not limited to: speech delay, fine and gross motor delays, obesity, autism, low IQ, hyperactivity, aggression, seizures, schizophrenia. Some people are entirely unaffected. Another way to explain it would be to say that being male does not cause autism, but it does give you a greater chance of being autistic, or indeed having special needs (go to any special needs school and observe the boy:girl ratio). This is the same principle. Association rather than causation.

I find Leo’s microdeletion harder to talk/think/write about than him being autistic. There are no positive sides to it. After embracing autism and presuming competence it all became harder again.  The best I could do was a vague link between undergoing adversity and growing stronger. Sitting with, tolerating and investigating those uncomfortable feelings has helped a little.

They tested us, Leo’s parents (if our results were clear then no need to test our other children). We waited months and months for our results. I have a suspicion that they were sitting in someone’s in-tray for some time, as a chasing phone call prompted a return call from the doctor. Our results were clear. This means none of the other children need testing – they are no more likely to have the microdeletion than any other person. This is clearly a good thing, but I was struck how I felt no relief when the doctor said the words, or even later on. I even felt a little sadness creeping in. The bit of me that wanted to say to Leo you have this unusual thing but it’s okay because I have it too was making itself known. I hadn’t realised it even existed until the results were in. I knew I was not concerned about blame or guilt, but I was not fully aware of the part of me that was holding onto a kind of hope that I could make it all okay for him by the two of us being in it together.

The period of waiting revealed an interesting phenomenon. I started to find signs of 16p11.2 in my other children and in myself: Caitlin has seizures, James had speech delay. Caitlin had great difficulty learning to ride a bike – was that due to motor delays? Miles did not roll over until he was 8 months old. I am excessively clumsy. Is there a pattern of problems with motor skills?

There are also some facial features associated with the syndrome and that list really drew my attention during the waiting period. They are so subtle, and within the range of features that you might find in anyone. They don’t scream out at you, they are almost nothing, and if you keep looking you can convince yourself you have found them. Large head, wide-spaced eyes, long philtrum (the space that connects the nose and the upper lip – think John Major). Low set ears, tiny folds in the corners of the eyes. Leo has these features (apart from the low-set ears). I noticed the long philtrum when he was born and I thought it strange as it didn’t seem to be in either of our families. Even stranger, it seems to have shortened over time and is less noticeable now. Caitlin has beautiful almond-shaped eyes. Do they have that shape because of tiny folds in the corners? I have a large head. Does James have low-set ears? I even started to look at strangers, at people on television. The features were everywhere, and search continued even after it lost all meaning.

The results put an end to the search for good, but it did remind me of the fact that you very often see what you expect to see. And that means you stop actually seeing. You start telling yourself a story about what you think you see, and you think you are understanding it. And then you’re off ‘making sense’ of what you have seen and putting the pieces together and yes it all fits…except it doesn’t and it is nothing more than a story.

Caitlin, uses a wheelchair, and most of the time she wheels herself, but sometimes her partner will push the wheelchair while she holds their baby. She has had people come up to her, eager to share what they think is an amusing mistake. I thought you were holding a doll they exclaim, I didn’t realise it was a real baby! What they don’t realise, not at the time anyway, is they have just shared  their assumptions about a girl in a wheelchair: she won’t have a relationship, or a family of her own. It is far more likely that at the age of 20 she would still be playing with dolls, so that is what they see.

I wonder how many assumptions are made about Leo and children like him. Some assumptions are made by people who do not know about his diagnosis: the lady who stared at him during meltdown in the doctor’s surgery did not say anything, but it was pretty clear some assumptions were being made. But there are also assumptions made by people who do know his diagnosis; his notes continue to say that Leo’s play is limited and repetitive when in my opinion it is not. He is developmentally delayed and this must affect the assumptions of the professionals involved. When the pre-school manager told me he can recognise the numbers 1-3, I could tell she expected me to be as pleased and surprised as she was. The thing is, he knows numbers up to 20. And the alphabet, the names and sounds of the letters. And a few words too. I tell people this, but it seems they do not hear, as it does not fit the picture they have built up of a child who is delayed in all areas.

I wonder how many assumptions I make without realising. Of course, that is the problem with assumptions – you do not realise you are making them! I sometimes find I have assumed that he has not understood something that in fact he has.  I wonder every day about how best to counter this tendency. Knowing it is there is the first step. Slowing down is the second. The mind is so quick to take over and run off with itself. It is much harder to watch and wait without judging. The third is replacing anxiety (mainly about the future) with curiosity about what will happen in this moment. All of this creates the conditions in which it becomes easy to presume competence.

A possible fourth way (I am hesitating about including it) is to stop comparing him to other children. I hesitate because the way I do this at the moment is to largely ignore other children. This is not sustainable, not least because I have my own example of what is (at least it appears to be at this point) typical development in my own 15 month old. It is worth pointing out that in my distress at how far behind he is ( at the age of 41 months he is currently assessed as 16-26 months in all areas) I can end up making assumptions about other children. Another boy called Leo who we met when we used to go to mother and toddler groups caused me to be envious of the ease with which I presumed he would breeze through life. We next met him at an autism group, newly diagnosed.

Still, for the most part, I know other children have the potential to upset me, and I live in a bubble, observing other children only briefly, out of the corner of my eye. If I can find a way to simply observe without judging, I might even make useful discoveries. Other children are much more relaxed than Leo, whose muscles are often tensed. I get used to the way he is, but when I see him next to other kids, it is as if he is braced against life. It is hard to learn when you are that tense. This is useful information and could have gone unnoticed. Nevertheless, it is often hard for me to look, simply because my mind will start running away with comparisons, worry kicks in, and it stops being helpful.

It is a process. You become distracted with other things, and assumptions, anxiety and judgment and grow everywhere like weeds.  You simply need to clear them away and start again. Like weeding, and most chores, it is not something you do once and then it is done. The weeds come back, but the more you attend to it, the less of a chore it becomes.

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, telling me 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.

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.

self-pity, and why I love the dietician

I loathe self-pity, probably because I can fall into that particular pit with alarming ease. With Leo’s new diagnosis it has become more of a danger than usual, and I have been reminding myself that There is always someone worse off. I only have to watch the news occasionally to see that this is true. For an hour, or a morning it might even help me feel lucky, to be grateful, and to deal with whatever I am facing with more of a sense of proportion. This rarely lasts more than a day, and maybe that is a good thing. I don’t really want to get the energy to deal with my own issues, by feeding on the difficulties of others. It is more than a little distasteful to turn someone else’s sorrow into a kind of self-help tool for yourself. Perhaps these days I am aware that my family could even be used in that way ourselves.

Occasionally however, it is helpful to be reminded that yes, things could be worse. As far as I was concerned, Leo’s test results were all in; he had had blood tests, and urine tests and all had come back normal. Then a letter arrived announcing that the urine test for mucopolysaccharides had been returned as normal. This was the test I wish I hadn’t googled. A cruel metabolic disorder with no redeeming features. If I had known that test was not yet in I would have been jumping on the anxiety train on a daily basis. I was flooded with a huge sense of relief, but it also took me a bit closer to an acceptance of what is. A bit of Leo’s chromosome is missing. Nothing can be done about that, it is a fixed fact and it can’t be fixed. I can’t fight it, he can’t fight it. How it affects him is as yet unknown, but certainly he has speech delay and autism, and both are high on the list of associated problems. Unlike autism I still can’t embrace 16p11.2;  my attempts to reframe it positively have fallen flat. However, I can work on accepting it. It feels like harder work, but for Leo’s sake I have to do it.

The day after the test results letter, I tore open another letter form the Child Development Centre. These days, when I see parent or guardian of…. on the envelope my heart steps up a gear. I even thought I could see a red stripe on the letter, as if they would alert me to bad news in this way. In fact it was simply another appointment to see the dietician.

Appointments can be annoying. You often feel you are just giving the professionals the same information over and over to no purpose. They will often then send you a letter detailing (with varying degrees of accuacy) all the things you told them at the appointment, finishing with the reassurance that they will review your child in x month’s time.

The dietician however, was cool. We needed to see her because of Leo’s extreme pickiness. I was surprised to learn this could be related to autism and I wanted someone to tell me it wasn’t my fault. It sometimes seems as if parents take full responsibility for their child’s food intake, despite the fact that you cannot force somebody to eat something if they do not want to do so. Nevertheless, I was deeply ashamed of Leo’s food diary, which went something like this:

toast and jam, dry cheerios, peanut butter sandwich, apple (hooray!) yogurt, dry cheerios, yogurt, peanut butter and rice cake, yogurt, boiled egg and toast, yogurt, banana (hooray!), chocolate cake, dry cheerios. Vitamins. And so on. It is bizarre that I feel like a good parent when my son eats an apple.

I scattered references to the things he had been offered and refused over the three days: a very small portion of roast chicken and potato, a carrot, some grapes, a raspberry, a cheese sandwich. He doesn’t just refuse to eat these foods, he refuses to look at them. The more we say they are yummy and eat our own portions enthusiastically, the more determined he becomes. I can imagine it is most annoying, so I can’t say I blame him. Every mealtime I have the choice of giving him something he will eat, or throwing food in the bin. It feels a bit better to follow the advice to put a bit of the food we are eating on a little side plate for him to explore. The only problem is, he doesn’t explore it, not even with his eyes.

The dietician said that this is a very very typical diet for an autistic child, and in fact it is not that bad. I wanted to hug her. She went on to explain a picky child will eventually eat if there are no other options. Most of the time an autistic child would prefer to starve themselves. She explained it like this. For Leo there are two categories: food and not food. We all have these categories, but for Leo, the ‘not food’ category is rather bigger. So when we offer him roast beef, or rice pudding, or peas, or pears, or porridge we may as well be offering him the cushions, the table and the chairs to eat.

In theory a plate of slugs could be a source of food for us. However, most of us could not eat ‘just one’ even if others were eating them. The ‘damp’ foods like meat stews and vegetables we offer him may well be causing a similar reaction in him.  She advised us to keep serving him what he likes, to not make an issue of it and just to push gently at the edges sometimes. He likes crunchy food so try crackers. Get him used to variety by cutting his toast in squares one day, triangles the next (I already do this, hooray for me). See if he will touch a runner bean then eventually lick it. Maybe one day he may eat some of it. What I loved the most was that she helped me to see things from Leo’s point of view. I had fallen into the trap of seeing it as a problem for me, and was too focused on my own feelings about it to even realize it is not about me. Again.

The issue of diet has become even more relevant following the 16p11.2 diagnosis. Apparently around half of people with the microdeletion are overweight or obese. Leo is not, but he definitely has the chubbiness my other kids had before they started school. Pre-16p I was not the slightest bit concerned. Now I am engaging in slightly deranged thinking: he had four slices of toast this morning, is that too much? I am only too aware that monitoring his food intake could well be counterproductive, and I need to find another way. Luckily I know a great dietician. In fact, I need to find another way to deal with all the 16p issues. I could end up seeing everything through the prism of either autism or 16p. The ideal is to hold those things in awareness, whilst seeing things through his eyes. And even as I write it, that suddenly seems perfectly, wonderfully possible.