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.


inappropriate noises

A lot of parents of autistic children find they are not listened to when they first raise concerns about their child’s development.  Others are in denial, and that was me. Denial is very tiring as all your energy goes into proving through the medium of everyday life that your child is not autistic. It is just as exhausting on the other side, but it feels more like an invigorating run through interesting terrain rather than an endless trudge through a desolate landscape. I feel the journey has actually only taken me to the start line (we are still waiting for diagnosis), but what better place to start?

I’ve never seen a baby so engaged with the world. Apparently this was my sister’s impression as told to my mum after seeing my son Leo at around 8 months old. My sister plus kids were on a brief visit to my parents’ house and when we arrived the kids were engaged in a puzzle-fest.  I plonked Leo in the middle of it all, and to my amazement he didn’t pause for a second, but clocked what was going on and got to work with the puzzle pieces. Ok, so he was putting them in the wrong places but the point is he had worked out the game and was joining in.

People are more likely to say that an autistic child seems locked in their own world rather than engaged with it, but when I look back I can see that he was engaged with the objects rather than the people, but hey objects are part of the world too, someone has to pay attention to the objects. Someone has to watch the wheels go round and see if they can work out a way for them to go faster or better. Having said that, I also remember a baby who would love looking at you, with one of the biggest smiles I have ever seen. I used to think it must hurt his mouth to smile that hard.  His eye contact was frequent and natural  and his 10 month check-up was textbook.

When your child regresses it inevitably feels like something has gone wrong (or more likely that you have done something wrong as a parent). Leo’s dad has even asked if someone dropped him on his head. Indeed not, but nevertheless, the search for explanations is as irresistible as it is unhelpful . Leo’s early childhood was somewhat unsettled and as an explanation for some of his behaviour it was pretty near perfect. He was a surprise baby and we had not yet managed to sort out our living arrangements. We had to go from my cramped house to his Daddy’s cramped flat every weekend. Daddy visiting every night then leaving after dinner. Endless house-hunting. No wonder he ignored daddy or turned away and didn’t wave goodbye.  I found it stressful enough, and I was 38.

My sister had also sent me a text soon after Leo was born saying amongst other things that she expected Leo would be very clever. I remember thinking I really don’t mind if he is, I just want him to be happy. I had read a lot of parenting books that eschewed strict routine, the naughty step and star charts. Co-sleeping, boundaries rather than punishments, saying yes when possible: I was revelling in motherhood this time (third) around, not worrying about milestones or whether my child was ‘advanced for his age’. As long as my son was securely attached everything else would fall into place. I had a kind of pure and joyful belief in that. You don’t need to teach them anything: Children are designed to grow and develop – just provide them with the opportunities and all will be well. I still don’t think there’s anything particularly wrong with that view, but  I do wonder if it meant I was slow to notice things that were different.

As I say, I wasn’t worried about Leo being ‘clever’. I was considered a clever child and it never really did me any good. But I did think he was slower than my other children to pick up certain things. Waving was the first one I noticed. When Leo was about to hit 10 months I told his dad he will start waving soon, it is so cute when they do that. But he didn’t. 11, 12 months came and went and still nothing. It was 15 months when he finally got it – and he used it mainly for telling me that he wanted to leave a place or stop an activity. How clever I thought.

When I tell the story of Leo I tend to tell it in terms of his regression. It is far from the whole story but there is a good deal of truth in it, so it bears retelling here. He was ‘normal’ until 13 months when he had an ear infection. He had been an enthusiastic babbler, correct intonation and some ‘nearly words’: ‘car?’ ‘cat?’ ‘book?’.  Now he was  crying all the time and avoiding eye contact.  I spent many weeks (months?) saying there is something wrong with his ears. I wasn’t being defensive, I really believed it.  His sister has hearing loss and Leo’s ears were found to be stuffed with wax. It all made such sense. Congenital hearing loss, glue ear or just wax – yeah one of those! No wonder he wasn’t talking (or making any noise apart from crying). How that had stopped him clapping or why it made him scream every single time we went in the supermarket I don’t know. When we went shopping people used to come up and ask me what the matter was (in a nice way). Is he teething, does he need a nap? I used to say: he doesn’t like shopping. The concerned person would laugh and say typical boy. He started crying full volume the moment he realised we were heading towards the shop. This showed he really really didn’t like shopping. And of course that he was clever enough to realise where we are going. Which was indeed true.

When hearing tests were normal and his ears were cleared out with conscientious use of olive oil drops I was puzzled. Daddy wasn’t puzzled, he was worried. He’s very quiet said daddy. He used to chat away all the time. As the experienced mother to the first time dad I felt compelled to come up with an explanation. Children don’t develop in straight line. Sometimes they go backwards for a bit.  I can’t remember how happy I was with that particular explanation.

Luckily there were other events around this time which provided me with more explanations. I had an emergency operation and was quite down afterwards.I had to stop breast feeding him due to me taking strong painkillers. No wonder he was unsettled. He also had his MMR jab (I was not worried that this had caused autism but it  seemed to coincide with a pathological fear of anything vaguely medical, which made sense – the nice lady calls you into a little room and then stabs you with needles. Whenever I asked google it answered  with autism, but google didn’t know about all these other factors so I didn’t take much notice. That’s not true actually; I bought a book called something like ‘Does my child have autism?’ I threw it away when I couldn’t find the page that said no he doesn’t – phew.

One of the other hardest things was how I felt my memories of Leo had been destroyed. I actually felt like someone had spat all over the moments of which I was most fond. He wasn’t showing how quirky or cool or independent he was, he was showing he was autistic.  When we went to the park at 13 months he enjoyed the slide and would clap himself after sliding down. That was cute yes, but when at 14 months he suddenly wanted to spend more time collecting and examining leaves and stones than playing with the equipment I was utterly charmed and kind of proud too. He is an individual! He loves nature! He used to chuckle to himself as he walked along and I found it unspeakably gorgeous (only recently found out this is an autistic thing).  When he was 18 months we went to a water park thing with a paddling pool, lots of fountains and even more children. After a quick run around he started picking up stones, sticks, leaves, bits of rubbish and putting them in the shoots of water to see if they would be carried along with the water spouts or fall to the ground. It was not long before other (much older) children noticed what he was doing and started copying him. Wow – I was proud, what a little scientist. Only later did I think oh yeah, an autistic little scientist.    So what if he couldn’t point to his nose, he had more interesting things to think about. That was why when you gave him a toy he wouldn’t exactly play with it , but would turn it over and inspect it, try to take it to bits.  Science, engineering, whatever.  As I said, someone has to be interested in things: if everyone was socialising all the time nothing would ever get done. This was how I rationalised Leo’s behaviour when I realised it was a bit autistic –y.  I have almost gone full circle now. He absolutely is quirky and cool and independent like the little scientist he is. He doesn’t follow the crowd, and  good for him, that is who he is, why would I want to change that??  I would love him to learn to talk (hey I’m desperate for him to learn to talk) but I don’t want to destroy the scientist in him. And I don’t want to let that keenness to stop me enjoying  the strengths he already has. Whatever, the important thing is that I have reclaimed my memories.

I think the first thing I noticed was that he didn’t copy. It is hard to say what was actually the first thing as a lot of the signs I have spotted only with the benefit of hindsight. For example, after being early to smile he was late to laugh and there was not a lot of it. Whenever he smiled his grandma would say he has a lovely laugh doesn’t he? I would smile and say yes but inside I was saying he doesn’t really laugh. I wasn’t worried (really, I wasn’t but the inaccuracy annoyed me).

Anyway, back to copying.  We were at a music group for toddlers – it was noticeable how much more engaged the girls were than the boys, including Leo. He was around 17 months old, you can’t expect too much at that age can you? He copied an action to a song and seeing him do this made me realise how he didn’t do this at any other time, ever. As I was in denial mode at this point rather than seeing not copying as a sign I saw it as an explanation for his lack of speech and another example of his quirky personality.  It is interesting that it is this kind of thinking that now annoys me more than anything: people who say well all kids are like that sometimes.

It all snowballed from there. There was a kind of inevitability to it and I decided to stop fighting and roll with it. I remember the moment I said out loud I think Leo is autistic.  it felt like surrender rather than acceptance, but I got to work on that pretty fast.  Reading and researching and turning over the issues in my mind. At  first, I wanted to read what parents of autistic children had to say, autistic self- advocates did not really seem relevant. I was very very very wrong. They are at the very heart of what you need to help your child. I was puzzled by everyone going on about sensory issues as Leo did not seem to have any. I was wrong again, he has loads. I still get it wrong. I decided he was ready to try ‘Rhyme Time’ at the Children’s Centre. Last time he barricaded himself under the table and did a big poo so I should have known better. This time I knew within two minutes it was not going to work, and yet I stuck it out for half an hour until we were both in tears and Leo’s distressed wandering reached its apex. Come on Leo you love the sleeping bunnies – hop little bunnies hop hop…. I was genuinely upset at the time, but I went home and had a cup of tea and now I’m laughing about it, maybe not heartily, but still I’m laughing.

Another thing that made me cry: The first letter I received from the Child Development Centre stated that Leo made inappropriate noises almost constantly.  It is true that he makes noise, and I had convinced myself this was A Good Thing as it showed intention to communicate. When I saw inappropriate noises I just crumpled. The letter showed me my son through the eyes of a professional. He wanders without purpose, he is non-compliant. The language is unfortunate and dehumanizing. That night I had a dream about going shopping with a 15 year old Leo dragging his feet  and saying ‘ah ah ah’, with people staring and looking sympathetic.   A wise person told me to replace inappropriate with atypical. This made everything better almost immediately, but it also made me remember this cannot be about me feeling embarrassed or disappointed. I feel like I am working things out, and I know I will be proved wrong again before too long.