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.