The wheels are starting to roll

So we are about 5 weeks in. I'm back in the room. The first week was very hard, I just didn't know what to do, where to start, what was right and what was wrong. So after that first week (and blogging here was very therapeutic) I collected myself and formulated a plan. Your mum collected herself too, I think she found it harder than she expected. Though she knew much earlier than me, I was much keener to find out either way, and if it was this way, keener to get going. So these are my thoughts on the subject, all of which may be proved startlingly incorrect over time:

Autism is not exactly genetic. Maybe the combination of your mum's genes and my genes meant that you were susceptible to autism but I think there must be something else at work. Your mum just rang with the statistic that in Israel in 1982 a total of zero children were diagnosed with autism. In 1985, there were 2. In 1995 there were almost 200, by 2004 we were up to 500. Your diagnosis was slow in coming from the Psychologist because she had 5 children that month. In Netanya. In Clalit Health Network (so do your sums for the other insurers). It looks like, as your mum says, an epidemic. Oddly, there was one year those numbers went down. 2002. The year after the whole world became scared of the MMR jab. After the fuss died down and the medical profession rushed to explain that it was safe, parents (including me) decided it was ok to vaccinate in this way. And then the numbers started to climb again. Coincidence? Shit, I don't know. I'm an empirical person, I'm no believer in this or that or him or her. Just show me the numbers, the data, the evidence, I'll not come into it with any preconceived notions. And I don't trust anyone who claims to be an expert because I went to school and university with these people and they weren't so smart there, so just because they have a research grant doesn't make them automatically clever now, it just makes them the people in possession of a grant with a preconceived idea of what they'd like to prove. They might be, in addition, very smart. Or they might be unable to function in the real world and decided to stay at school forever. Who knows? Me, I look at statistics, and I apply logic. Sometimes I'm wrong, but with this vaccination thing, well, from what I read, you really need to make a careful decision if you want to pump a virus and 125 times the maximum recommended amounts of mercury into the body of a child whose physiology may or may not be typical or standard. Maybe some of the kids who have gut problems (which you definitely had, you had awful reflux and always loose poop) are the ones which have a damaged or leaky gut, and when they get the shots carrying massive amounts of heavy metals - way above what is safe according to guidelines, then the metal gets through the already damaged gut and starts screwing up the brain. And all the other kids who have ok GI tracts don't get affected so you think '50/50 unaffected kids, what is the problem with vaccines', except you are looking for 1 in 150, and if you take 150 you might not have the 1, or even if you take 300. You might need to find 3000 kids to find 20 because they could be numbers 734, 829, 1133 etc. And they don't have enough money, motivation, time or belief that that is what you need to do? On the one hand you have drug companies, on the other hand you have a poor mother. They argue opposite cases. Whose more effective in their argument? Exactly my fear. Despite the fact that the mum is the one with the kid, and mums generally know. Your mum, who actually understood you less than me, intuitively knew that something was not right for maybe 2 years longer than me. Maybe she instinctively expects responses she is not getting, and I just love you and everything you are. I didn't give birth to you, I don't instinctively know to feed you, hold you. I do it because I love you. And as for vaccines, well, just before she put that MMR vaccine in your arm, I asked Nurse Carole 'this is safe isn't it?'. She said 'of course, they've shown the reports of the Professor were rubbish'. And that image, that moment has stayed with me. It never felt right, I can't remember anything as vividly that happened in a doctor's surgery as that. It has haunted me.

I had a headache this morning. It might have been lack of sleep, it might have been lack of fluid, it might have been stress, it might have been something else or a combination of several factors. I suspect autism is the symptom of some earlier problem. It manifests itself as autism. In the same way as food poisoning can end up as a fever, and so can an infection etc. I think there are various paths that lead there. It makes it hard to isolate the cause, it makes everyone's autism a bit different. It might be bollocks, but some parents seem to say that they saw it developed in front of their eyes at 18 months after healthy development up to that point, and your mum seems to think that you've always had the signs, though we both agree that you were developing faster that lots of children in your first 18 months in areas you are now behind in like speech. Hmmm.

You have had, for your whole life, runny poop. I didn't know this wasn't normal. I've never seen another kid's nappy. But then you had a solid one. When I didn't give you milk. And since I cut down on milk it isn't runny but soft. I think you are struggling to digest dairy, and maybe you have an intolerance to wheat too. Maybe apples too. Not sure. I think autism is gut damage, not just brain damage. It might sound wacky, it might sound like I'm clinging to some notion that is not based in proven science but your mum told me that 65% of children - including you - had reflux when they were very small. You were awful with it, I remember you coughing as you fed, sleeping on a slanted mattress, explosive poops as you fed. It sorted itself out, but it was terrifying. And 65% of kids with autism had reflux??!! Too bizarre.

None of that is to say that there is no neurological damage, there undoubtedly is now. That is not to say that you do not need occupational therapy, psychological efforts to intervene and bring you up to the level you should be in speech and communication, where your deficits are becoming ever more apparent. You definitely do. We are doing Stanley Greenspan's DIR/Floortime therapy, and it is working very well. Your responding as well as I'd hoped, and though it is a long process no doubt, I'm your dad. I have a lifetime to give.

A week on

We started the log today - and you woke at 5.45am. You counted on your bed for a bit, and repeated something from a TV show. I went and got you, and you seemed to be carrying on from where you left off yesterday. Cold to Mummy in bed, irritated by the TV not doing what you wanted, wanting the lift and to change channels. Lots of whingeing and stamping. You said 'coev li' and asked for Acamoli. Me and Mummy looked at each other and wondered whether you really had pain. You asked twice, so we gave you it. Maybe it was your teeth, though lots of things I read link autism to a weak stomach. I think I'm reading too much into it. You chewed the syringe on your back gums. Must have been gum ache.

We went to the doctors to get advice on the blood and urine tests. I also requested one for mercury, since I read that DAN suspect that autism is triggered by high levels of metals that can't be absorbed. I also got an extra couple of tests to see if you are deficient in Vitamin B6 and Magnesium. You were really irritable all the way to Mummy's work, but when you said goodbye, and had a little cry when you called out for her, you behaved we'l. You saked to go to the playground so we went and had a run around for half an hour. You were very happy, and calmed down a lot after that. It's lovely to see you laugh, and chase me. You waved goodbye to th playground and came without any protest.

I sent Ifat an sms today.

I read an article about the Gluten Free Casein Free diet today that said that all the research into it fails to show any effect. I was trying to work out whether it is a good thing, the theory that it can't do any harm sort of sounds right, except for - as Ifat said today - Ben will have enough things to be stressed about, he will be hungry and will want food that we will be stopping him from eating. It seems a valid point, we have enough trouble with food as it is. But Ifat is a psychologist. So she thinks like a psychologist. I'm a parent, and as I've said, I have a different agenda to her.

I need to spend less time blogging, and more time working out what to do. It has helped enormously with the pain and shock, but I've got a huge job in hand, and I'm going to find out exactly what that job is. I'll be back.

Trawling the internet looking for an answer

You woke up at 5am today. Well, actually, I woke at 5am, lay there praying that I could go back to sleep, and you woke at 5.05am. The cat woke at 5.06am and started jumping at the door handle, and then Mummy got up and went to see if she could get you back to sleep. After 5 minutes I heard something that sounded like you were having a conversation, and a bit later I saw in the dark Mummy bringing you to bed. You're usually very good at night. You sleep through most of the time, and things have been even better since you are sleeping in one place and you aren't getting two or three hours to nap in the afternoon. You go to sleep in 10 minutes maximum now, usually between 7pm and 8pm. It has improved our lives no end, and your mind and body seem to switch off at the same time. No wrestling at 11pm when your body is full of energy and your mind is fried. I'll never know why in Israel the State advises such a ridiculously long nap. It must destroy families. It certainly helped in destroying ours last year.

I've been spending a bit of time trying to plan the step-by-step approach to our new lives. I think the first step must be to get through the initial Health Service diagnosis period. No-one wants to speak to us in anything but the vaguest terms till we have the document. Meanwhile, I think we need to get hold of as much information as possible so we are ready for the report we will get in a couple of weeks, and so we can act immediately. We probably need to get a second diagnosis too, and Noam from The Shinui Institute might be able to help us with that.

I spent a bit of time of the last day or so looking up diet. I have a theory that generally psychologists recommend psychological approaches, therapy and things like that. Doctors generally like to prescribe medication. Homeopaths swear blind that natural remedies work better. And parents will take anything and everything, from anyone and everyone. I mentioned before about the Gluten Free Casein Free Diet that seems to crop up a lot on the internet. It seems to be a word of mouth thing, I can't see any solid scientific sources quoting it as gospel. But there seem to be as many people praising it as there are people singing to the high heavens about ABA. I read some success stories on one of the websites that many parents think it seems to make an almost immediate impact. One parent said something that sounded enormously similar to you, that her child had almost been self-selecting all the foods that the GFCF diet would rule out. And recently, you've been living on cornflakes and milk, bread, cheese in some form or other whether it is sandwiches or pizza, corn shnitzels and anything sugar-laden and sweet. Whereas once you would eat other things - from broccoli when you were one, to sweet potato soup only 6 months ago, you have been narrowing down the options till I suspect we will just get to chocolate milk and biscuits. Reassuringly, you still love fruit, though I can't get you to try anything new like Sharon fruit, despite the fact they were named after the place you live and at the moment they are virtually free in the market and so so sweet.

I've read in a couple of places that people have been cured of autism just by going on a gluten and dairy free diet. It's hard not to be hopeful that it won't help you. One of the websites said it helps 65% of children but it is so hard to analyse who is saying what and obviously, those parents with a success story are more likely to say something on a forum or website than someone who tried something and couldn't see a positive result. The self-selecting thing did make my ears prick up though, and the fact that as your diet has narrowed, I see more outward signs of stereotypical characteristics: flapping and arm-waving, shrieking instead of just asking for what you want, running up and down and the need for physical activity. Other parents say that speech and eye-contact improve rapidly, others add that social interaction gets better. I think we are going to spend a while doing a bit of research and keeping a log - maybe till the final assessment with the psychologist, then we will change your diet. I don't think we will change the family's diet at this stage, and maybe we will phase out milk first. I'm not sure, I'd like to actually speak to someone about it rather than the internet that doesn't answer back. We'll do it for the time between the blood test/psychologist's diagnosis and the next step; I read someone saying that they wanted to see how it worked in isolation, therapists are often very keen to claim the success for themselves. I'm going to start keeping track of what you do, what you eat, how you sleep, how you behave, a log. Maybe a week or so should give me an idea that you flap your arms once an hour or once a day on average, that sort of thing. Meanwhile, we'll get our hands on some better information, some cookbooks, that sort of thing. Maybe I'll get Safta to come over and cook with me, or I'll go there, we need to have 100% control of what goes in for a while. Safta comes from the place where if you eat anything it is always good, and a little bit of bread won't change anything. I've read enough stories to see that a tiny bit of something on the banned list has returned the child to the former state in hours. We'll need to be careful.

I think they have found that children with autism have problems processing gluten and casein, they lack an enzyme or something. I also read that someone gave their child Vitamin B6 and it worked wonders. Apparently it is a pretty common alternative therapy, lots of autistic children just lack it and need a megadose. There has a bit of research showing that it is important too. I'll need to do some more research, and wait for the results of your blood tests (or actually find out where to actually take you for them first), then see how that applies. Magnesium seems to be important too. They seem to work well if they are prescribed together, and what I found is that scientist are quite evangelical about what information you can trust, how to conduct a study, what should be doubted. The studies have to be blind and controlled otherwise a miracle cure is to be doubted. That doesn't even touch on who is actually funding the study, or the bias that the scientist might have begun with.

I read something on a website that there seems to be a vitamin treatment including B6 called Super Nu Thera that has had hugely positive effects in some cases too. I presume you do B6 or Super Nu Thera. Let's get the blood tests first. There is also a Guardian article which mentions a parents' group called Generation Rescue run by Jenny McCarthy and Jim Carrey that claim that autism is absolutely not genetic, as doctors tell us, but mercury poison which has been wrongly diagnosed. There is a mountain of information and theories out there, and I'm feeling swamped.

We had a great morning, except it ended at lunchtime rather than 9.30. We took Mummy to work, and you had a few tears even though you were saying "Bye-bye Mummy". You understood what we do when we drop Mummy off, and we went to buy some milk. Except we didn't get there for and hour and a half because you ran straight to the library. We spent ages outside the door of the library, you love the games room that they have there. Eventually we got to the swings, after a few tears, and I saw Miri, who has a little boy in your class in nursery. She asked why you weren't in nursery and I explained about Dr Pozner. She wanted to know what the diagnosis was and why you weren't in nursery, I said we don't have a diagnosis yet, we have lots of psychological tests and blood samples to give, but the doctor did say you absolutely shouldn't be in that nursery, you needed a small one. I said when pressed that it might be ADHD or Asperger's Syndrome, maybe an allergy, maybe something else. We had a discussion about you, and how much you flit between things, and how much energy you have. One of the part-time nursery teachers was also in the park, Shuli, and she is very fond of you. She talked to me a bit about it, and gave me her number for Mummy to speak to her about a very small nursery in a big place in a moshav called Beit Yitzhak.

We went to the shops, finally you caved in, and I did something I had never done before, something I saw in the Tomi website. I wanted you to come to the shops, and I wanted you to stay with me in the shop and not run off like you usually do. You went into the kiosk and helped yourself to gummy bears, and I thought, "ok, let's see if the bribe/reward thing works". You stole one, I bought three and rewarded you all the way round the shop for being good. You barely, only once and you came back, ran off. You held my hand. Interesting. And you were good all the way to the car.

We had some fun at home, you had Marmite on toast for lunch, with an apple and some mango juice. It's going to be difficult if we drop wheat. You were itching to go out though, and when we got to the lobby you just wanted to play in the lift. One of our neighbours tried to talk to you, but you blanked her. You are much more friendly witht those you know. And to be honest, I don't like her, I blanked her too!

You were clearly exhausted though, we went out and you had no energy. Mummy was very stressed, the first week of the month is always very hard for her, and since her boss decided to move on the last day of January, nothing works in her office. She, like me, wants you to have regular routine. If you are not asleep by 8pm or so, then the tension rises and Mummy is always trying to run your routine remotely. I get told not to let you sleep, not to let you sleep at a certain time, not to let you sleep more than half an hour. I always agree, but what I get is a tired, irritable boy who was far too alert to go to sleep at midday but is flaking out at 3pm. The choice becomes an awful one: either let you go to sleep for an hour or two, and understand that you won't go down till 10pm, don't let you sleep at all and you will be irritable beyond belief, or let you sleep for a bit and wake you up, which very often backfires and you don't go to sleep early enough but you are still irritable. I prefer option one, accompanied with the inevitable fight with Mummy. Mummy doesn't. A source of tension that hopefully we resolved today.

When you turned the TV off, tried to shut the computer down and put your shoes on, I got the point. We went out, but you just had no real desire to play. You wanted to ride the lift, then sit and play in the sand and stones where they are building the promenade. So we came back, albeit under protest. And while I was in the loo, you went to sleep. I woke you after half an hour, and you were desparately miserable. It was the worst I had seen you all week, not communicating, lots of stimming, not communicating at all, outbursts when you didn't get what you wanted, not particularly happy to see Mummy or Safta. I'm not sure, but today you basically only ate gluten and casein, and an apple; you even refused strawberries.

Mummy broke when we got home, and couldn't cope with the pressure of work, with me being exhausted after your most difficult day in a long time, with the pressure of needing to find out about what to do to help you but having no time to do it, and just generally with the lack of down time. She cried, I put you to sleep. It was a very hard day. I hope that tomorrow will be easier. I'm going to start the log, and Mummy is going to contact a dietician. If you wake after 6am or 6.30am I think we'll be fine.

Should she stay or should she go now?

I'll never get my head round the fact that Sunday is the first day of the week. It somehow seems wrong to be so alert at the time when the rest of the world think that bed is a good idea. Though, of course, when you are up, you're up. You've been getting up earlier and earlier lately.

Mummy had her first day in her new office; a stressful day as ever since a week's work has to be done in about three days, and nothing is working properly in the new place. We got up and had a nice morning though. We played a bit, and watched a bit of TV. Mummy took the bus because our car insurance had expired, but she managed to find a good deal later on. Well, when I say good, 2130NIS for virtually no cover. But it was the best out there.

You ate your breakfast with us, earlier than usual at around 7.30am. Mummy said how lovely it was to leave the house and not have any problems going to work, but inevitably she found out all the buses were full and she was late. Maybe I'll just drive her in future, it only takes 10 minutes.

You had your cornflakes and we cleared up the lounge. The cat had a chance to clear up after you, but it is getting more stressful keeping Khatouli. She is just not a nice cat, she spent most of the day trying to climb up on top of the units and all over the table. I can't leave you and her in the same place comfortably, as you try and play with her and she tries to attack you - not violently, but if you did hurt her without realising you were hurting her, well, I suspect she would scratch you. She bites when you stroke her, not teeth sinking in biting, but get off me biting. It's not a good mix. You can't eat when I'm not supervising, the cat prowls and I've caught her so many times jumping up trying to get at your food. More than one plate of cornflakes has had to be thrown out. Mummy wants to put an ad up on a website to see if someone will take her. I suspect she is just too wild, if you met her, she wouldn't be warm. Even though it is an unpleasant thought, I think the street would be a better place. Mummy thinks that the cat wouldn't fend for herself, though I suspect that that is the exact reason why she can't adapt to being stuck in a flat. Every time the door opens, she wants to make a bolt for it, and she never ever learns. She jumps at the door handle to open up every time she is in the office, and she can actually get into rooms that are closed. She learned to open them by bouncing on the handle. Very clever, but not good - if you are asleep she wants to wake you, and she will walk on you. If I close the door she will bounce off the handle and even if she doesn't succeed she will wake you, make everyone stressed. And if we are going to get you a puppy, the cat will never accept it. Fur will fly, so I think the cat is going to be leaving us soon.