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.