Signs of hope

You kissed Elizabeth. For no reason other than she is your favourite at the minute. Right on the lips. Elizabeth is the coal truck from your Thomas the Tank Engine Ultimate Set that we scattered across the floor when we were playing games. You know she carries "black coal". You're magic.

Me and mummy were sitting talking about how you will be great at thinking round problems when you get older, how you will see things in a way that someone else might now, you’ll see it for what it is. Most people would have just said the stop-light for Percy was green, because it is in the song. But you said it was blue, because it was. Daddy said green, but you were right. As we were talking, you stood up, and pulled at your nappy and said “poo”. Mummy ran off to grab a potty, but the beautiful floral odour let us know that it was a joyous declaration of an event passed rather than a promise for the future. But a one-fingered salute for those in nursery who wrote you show no discomfort with your nappy.

Mummy changed your nappy on the floor in your room, and you were a little difficult, but not as rough as you can be. Then as you stood up we gave you a hug, and you took mummy and daddy’s heads and made us kiss. And kiss again. And again. Then you kissed us again and again, and made us kiss again and again.

We decided to - well, I decided to - start making the video for the Mifne Center. We needed to get you on film playing and eating and doing the things you do. You were playing with Mummy on the floor

I noticed that you have started to flick the back of your hair, usually on the right though not always. Like a nervous tic. I'm not sure if it is getting worse, or if I am just watching out for signs more and more now. You wave your arms, you flap them, particularly when your emotions raise beyond the run-of-the-mill. If you get excited or sad, cross or frustrated, or sometimes if you are just plain happy, you wave your arms up and down and jump up and down.

I was reading a bit about a gluten-free casein-free diet. It seems that lots of people on the autistic spectrum have found it helps them a little or a lot. I haven't investigated it enough, it seems though that there is anecdotal evidence (though nothing scientific) that lots of problems that children on the autistic spectrum have are diminished or disappear if you go on this diet. One of the things I want to be really careful of at the minute is looking for a cure. It is not going to happen I suspect. What I want to do is work out the way to help you live the best life you can. If that is the same as you are today, then I'll put every effort into that, and if that is for all intents and purposes 'cured', well, I'll bite your hand off if you offer that to me. But I sense the road ahead is a long one, but we'll be travelling it together.

The thing that made me think most about this diet is the fact that Dr Pozner seemed to be implying that your current diet is not good for you. It's not just the fact that you are a vegetarian, she gave us a long list of checks and blood tests for you to have. I'm not going to change a thing till they see exactly what those tests say, and we'll get some advice from a dietitician and from the people who know more about it than me. Who knows, you will probably need to have fish at least. I think you like it anyway, I've heard stories of you stealing it from other children's plates! I've noticed you becoming fussier and fussier with food, which is apparently typical. Lots of children with autism seem to show signs heightened senses, whether that is touch, noise or whatever. Taste seems to be affected quite a lot, and you seem to be streamlining down to an entirely bread and milk based diet, not good if the stories about GFCF are to be believed. The last thing you need. And if we go on that diet, or if you do, you might have the equivalent of drug withdrawal for a couple of weeks. It sounds like it is something that can only be a good thing, hard work, lots of money, but a good thing. If it doesn't work, it almost certainly won't cause any damage. I'll pick up a book maybe. No ice-cream, no pizza, no Marmite sandwiches...an horrific thought.

We did some more filming, you and me playing with your Thomas set. You didn't ask me questions or give me answers, but off camera, you pointed to Annie, you looked at her, then at me and then back at her. You do do it. I see it almost every day. I just need to sit down with someone and work out how to get you to do it all the time, find out the tricks, the methods to encourage you to want to engage me and Mummy and everyone to show and include us in your games. We've all clearly done something right so far, I feel that we have all worked hard to stop that door shutting, we've kicked at it, we've barged it open. Together we'll keep it there. When you looked up, and back down you filled me with hope. All those thoughts of what you can't do, what you won't do, what you don't do. And in one little look I see exactly what you can do, and what you will do.

I threw you around a bit for the camera, lifted you up and dropped you down on the sofa. I got you to give me a kiss in exchange for lifting you up, and another for dropping you back down. It was great to see you laugh, to see you look straight at me, to see you respond to rewards. Most of all it was great to play with my little boy, or at least until I collapsed. You weight 16 or 17kgs. You throw that in the air 20 or 30 times and tell me you don't feel like going to hospital and going on a ventilator. I filmed you with Mummy too, playing, and then for no reason at all apart from the fact you are her little boy, you gave her a kiss. I was so happy to have captured that on film. I don't know what The Mifne Center's criteria are for acceptance, but if it is that they feel that they can make an improvement, I hope they see that we have a lot to work with.

You ate your cornflakes like a good boy, except Mummy filled it so much you went straight in with your hands. Your nursery said you never use cutlery, but you do and you soon used your spoon. You just drank the last of the milk from the bowl, which reminded me so do I. Lots of children with autism seem to prefer using fingers. I'm not sure if you do, but because so many of the foods you eat now don't need cutlery.

We went to Cafe Gan in Rishpon at midday. You were in a fantastic mood and we gave you a dummy so you would sleep in the car. It wasn't that far so by the time you finally fell asleep, maybe 12:20pm, we thought we ought to let you have half an hour. Mummy gets very stressed out about you going to sleep late, she needs to have some time for herself in the evening, and the whole of Israel seem to agree that 10pm is a reasonable time for a 3 year old to go to sleep. The State insist that children of 2 and 3 need a couple of hours sleep in the afternoon. Absolutely rubbish of course. You are much much more stable in the evening going to sleep when your body and your head are both tired, rather than when you used to start climbing the wall at 9pm, your body full of energy and your mind not following. One definite plus of not being in nursery.

We discussed telling people, your Saba in Miami, Doda Ifat who hasn't been a very good friend over the last year, but who is supposed to be an expert on these things. I'm in two minds, Ifat has a Doctorate in Psychology, working with autism. But last year she told us you weren't autistic. Which I find difficult to deal with. She said you needed a speech therapist to help you with your bilingualism, which was not right, I knew it at the time and it was confirmed by the psychologist and Dr Pozner last week. But she will be very well connected, and might help us find some programmes, and some new methods. And I know that despite the fact that she has hardly called us since all the mess last March, she'll pull through now.

Waking you up was very sweet, you tried to stay asleep, but then you saw that there was a new place and you wanted me to put you down so you could investigate. You walked around a little tired, investigating everything. We watched you a bit, and we filmed a bit more. Both me and mummy took you over to the chickens and the ducks. There were rabbits and guinea pigs in the "chicken run". I put speech marks round it because you insisted on using the words, I have no idea how you know the words "chicken run", Mummy doesn't even know what one is. But then, they've already mentioned you are smarter than her. I asked you to tell me how many eggs there were, "one, two, three". We're on the way.

There were moments when you were half-awake, walking round alone, it made me sad. Not because you were alone, but because I think this must have been your life in nursery. At one point, you started to cry and you called my name - I think you lost us behind a tree. That might be much more significant than you can ever imagine. I came and scooped you up. You also realised that the tables all had numbers on, and spent ages wandering round counting them. You got a little distressed when you couldn't find the sugar bowl with 8 on, and no coaxing with toys or ducks would help. You've been obsessive with numbers for a long time, not really really extreme, if you couldn't find 8 you would have been ok, but I went and helped you find it all the same.

You weren't too keen on bagel and cream cheese for lunch, though you did lick the cheese from the bagel, and scoffed all the hard cheese from the plate. After though, you sprang into form, and wanted to climb the trees, balance along the pole they propped up against the tree. There was a roundabout, and we went round together on it, I felt sick much quicker than you. Dr Pozner asked if you liked spinning things, tops, dreidls, spinning round in circles. I think you do, but you aren't obsessive about them. You do spin and laugh, you say "dancing", and I remind myself as often as I can that you are just a little boy, and you spin and you dance and you laugh. You aren't a bundle of symptoms. I need to remember to love all the wonderful and funny things you do over these next couple of weeks. It won't be too hard, you're such a funny kid.

After we ate and played in the playground we needed to change your nappy again, and we told you to come with us. You ran straight to the toilets, you knew exactly what to do. You were an angel, then we went to the car. No protests. On the way back we stopped off to look at a nursery in Ramat Poleg. Mummy spoke to Aliza today and they agreed you shouldn't go to her lovely nursery tomorrow, you need a small one where you can get lots of individual attention. You'll just get lost, and even though they would be better, you need the ideal circumstances. She recommended Gan Nili, and we went and had a peek through the fence. You are no fool, and even though you couldn't see anything from the fence close up, you said "playground", so we took you to one. Poleg is much cleaner than where we live, hardly any bottles broken bottles and dog poo. We let you run like a madman as usual, and you wanted to climb the big ladder.

The thing that hurt me more than anything on the second questionnaire that the Herut Kindergarten completed was that they said you were an average climber. It wasn't the fact that they opened a book on autism and wrote that you have every symptom, it wasn't that it was cold and made me feel that they didn't give you the love you deserved or needed over the last year, it wasn't the fact that they said they had tried everything when I know that they tried very little. It was the fact that you are exceptional at some things, and they said you were average, and you can climb. I can't wait for the days we can go on adventure holidays, finally, the perfect partner. Well, I will come along and keep you company at least, I'll hold your ropes or whatever.

You went down the huge slide, averagely. And we ran over to the train and you went down the little slide - you love playing peekabo. There was a woman, probably a nanny, with twins. Little angels, and your mummy pointed out that one of you at a year was the equivalent of octuplets; I couldn't argue.

I took a breather as you ran around playing chase with mummy, giggling non-stop for 20 minutes as she tried to cut you off and grab you. You and her must have run half a marathon round that pole. It made me think of the time the little boy ran back and forth in the garden in After Thomas - not smiling or interacting. But then I looked at you and I just saw a little boy who just loves running with his mummy. You loved it, you were desparate to play. It made me so happy.

We had a little tantrum when I tried to negotiate a departure, but we went to the car and you were fine. After all, why shouldn't you spend all day running around outside? You were a tired little boy when you got in about 6pm, Mummy's fears of you being up late because of your nap were unfounded. You asked for a dummy, but we had to have some dinner. I offered you a choice of pizza or pasta, and you pointed to the pizza and said "pizza". Clever little man. You were ravenous, trying to yank it out of the oven when the timer went and take it off the plate before I'd cut it. Then you collapsed.