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.
Saturday, 31 January 2009
Friday, 30 January 2009
A film I wish I'd seen earlier
You woke up in a wonderful mood today, though I would have much preferred it if you woke at 7am rather than 6. I took you to bed with me and Mummy, and we hugged for a bit. You have a wonderful habit of bouncing like a pinball between us both: five-minute hug from mummy, a five-minute hug from daddy, then back to mummy. I asked you if you wanted to watch Titch in Hebrew or English, and like a good boy you said "English".
Though it was Friday, Mummy had to go to work, so we took her over to her new office. I made sure Mummy said goodbye a few times but as we pulled away you started to cry and ask "where Mummy gone?". I slowed down and explained to you that she was at work, and we'd go and pick her up later, and you stopped crying and waved "Goodbye Mummy". I told you we would go to a playground and we went to the Winter Pond near our home. You were so happy and we ran around climbing and jumping. You're much braver than me, I'd never run over a bridge that swings like that when you walk on it. Still I weigh 85kgs more than you, so when it swings it really swings!
When we got the end you got to the "green slide", I asked you what the other one was and you said "lellow slide". It gave me so much hope, you do things that you are supposed to do, and I'm going to make sure you get to do them more and more. Eventually, after an hour, maybe less, you headed back to the car and stopped at the kerb. You were so sweet when you looked down, and said "cross the road". You always stop at the kerb, I'm so proud of you. I saw how other little boys just run out in front of cars without looking, you're very smart. When we got home we had lots of fun. I need to remember what a pleasure it is being your dad. You are the funniest, cheekiest little sausage I know. I never see other children laugh half as much as you do.
I spoke to Darren today about his girlfriend's son. He has ADHD. Darren told me he has been told that he is borderline Asperger's, whatever borderline Asperger's means. I spent a bit of time reading yesterday and the day before and I suspect that you might fit this more than I thought originally. There are some things that you don't do at all - you're great with change of routine and location, you're not at all clumsy, but it seems to be a series of symptoms of which several but not all apply. You have a large number of them, the narrow amount of interests, poor social communication with your peers, good speech and cognitive abilities, repetitive stereotyped behaviour. The doctors, I suspect, will not rush into any label, they'll just say you are on the spectrum and wait and see. I'm not so fussed, I don't mind which label they put as long as I can get to work with you as soon as possible. Darren told me that the disability allowance is around £250 in England, and that his girlfriend's son gets to see a psychologist every 6 months or so. I have a feeling that Israel is going to be a better place for you. The allowance is more in real terms - around 2000NIS, and certainly more relatively. The system seems to be set up better here too, though I will speak to the National Autistic Society in the UK to see what sort of help you would get if we went back to England, though I think even the fact that I would get more help for me here would make things better. Mummy needs to work, and I'll get help from Safta, and so will you.
Mummy did some research and the Alut Society in Israel has special nurseries that sound wonderful, one on one with experts. The one that is 5 minutes from us is full but maybe there is another not too far away and I can drive you there. We need to get the diagnosis though, and that will take a couple of weeks. Then we can speak to them and get some concrete information. There are other places too, and then in September the Council is obliged to send you to a special communications nursery where you will get expert help.
We drove over to get Mummy at around 1pm, and you loved running around her new office. Obviously, you went straight to the phone and called from one office to another, and you stole Mummy's boss's calculator. I put some empty cardboard boxes in the car so we can make a ship or a plane or both when we got home. It'll give me an excuse to be a kid again.
Mummy was delighted to see she works opposite Oasis now, the frozen yogurt cafe. We went in and you managed to negotiate some gummy bears. You wolfed them down and then we absolutely uncontrollable after. You just wanted gummy bears. You would sit and eat your frozen yogurt, and just ran around being really difficult. Eventually, we just packed up the tub and tried to get you in the car.
We took you over to Safta's for the afternoon so we could rest and talk. Mummy was exhausted and I am becoming more and more convinced that you need more full-on interaction, I feel a little uncomfortable leaving you to your own devices the more I think about it. We decided to watch a movie that Mummy had already seen a while ago, and we had been wanting and not wanting to watch for ages. It was called "After Thomas", it's the true story of a little boy called Kyle with autism whose parents got him a dog which helped him connect to his family and the world around him. He called him Thomas because Thomas was his favourite toy, not unlike my little man. There were lots of other things that made me think of you, they way he dropped to the floor for one, the way we call you and you don't look round, the way you ended up being on your on in nursery. But Kyle was much more severe than you, he never laughed or smiled. You talk non-stop in comparison. He was older, in a time when very little was known about autism, and he made such a huge leap with the help of his Golden Retriever. I was all shaken up after the end of the film, and Mummy asked me how I was feeling. Quite the most impossible and ridiculous question I have ever been asked maybe. I just couldn't even think about what an answer would sound like. I just started to cry. I'm not sure what I was feeling, or maybe it would be closer to say I wasn't sure what I wasn't feeling. My emotions were all over the place, I just felt so absolutely desparate. And sad, and angry, and heartbroken, and guilty, and frustrated, and frantic. And in it all, I still loved my little boy, and the film made me think that we could climb the biggest mountain together. It gave me hope that if something as simple as the love of a dog could open such a firmly closed door, then what me and Mummy have for you could smash straight through it like a sledgehammer. But while I work out the things we need to do, maybe we should get you a puppy.
We picked you up from Safta's, and brought you home. You were exhausted. I went to make coffee for me and Mummy and you cuddled up to her. I came back with it and you were sound asleep hugging her. We left you there for a bit, you have the loveliest cuddles.
Though it was Friday, Mummy had to go to work, so we took her over to her new office. I made sure Mummy said goodbye a few times but as we pulled away you started to cry and ask "where Mummy gone?". I slowed down and explained to you that she was at work, and we'd go and pick her up later, and you stopped crying and waved "Goodbye Mummy". I told you we would go to a playground and we went to the Winter Pond near our home. You were so happy and we ran around climbing and jumping. You're much braver than me, I'd never run over a bridge that swings like that when you walk on it. Still I weigh 85kgs more than you, so when it swings it really swings!
When we got the end you got to the "green slide", I asked you what the other one was and you said "lellow slide". It gave me so much hope, you do things that you are supposed to do, and I'm going to make sure you get to do them more and more. Eventually, after an hour, maybe less, you headed back to the car and stopped at the kerb. You were so sweet when you looked down, and said "cross the road". You always stop at the kerb, I'm so proud of you. I saw how other little boys just run out in front of cars without looking, you're very smart. When we got home we had lots of fun. I need to remember what a pleasure it is being your dad. You are the funniest, cheekiest little sausage I know. I never see other children laugh half as much as you do.
I spoke to Darren today about his girlfriend's son. He has ADHD. Darren told me he has been told that he is borderline Asperger's, whatever borderline Asperger's means. I spent a bit of time reading yesterday and the day before and I suspect that you might fit this more than I thought originally. There are some things that you don't do at all - you're great with change of routine and location, you're not at all clumsy, but it seems to be a series of symptoms of which several but not all apply. You have a large number of them, the narrow amount of interests, poor social communication with your peers, good speech and cognitive abilities, repetitive stereotyped behaviour. The doctors, I suspect, will not rush into any label, they'll just say you are on the spectrum and wait and see. I'm not so fussed, I don't mind which label they put as long as I can get to work with you as soon as possible. Darren told me that the disability allowance is around £250 in England, and that his girlfriend's son gets to see a psychologist every 6 months or so. I have a feeling that Israel is going to be a better place for you. The allowance is more in real terms - around 2000NIS, and certainly more relatively. The system seems to be set up better here too, though I will speak to the National Autistic Society in the UK to see what sort of help you would get if we went back to England, though I think even the fact that I would get more help for me here would make things better. Mummy needs to work, and I'll get help from Safta, and so will you.
Mummy did some research and the Alut Society in Israel has special nurseries that sound wonderful, one on one with experts. The one that is 5 minutes from us is full but maybe there is another not too far away and I can drive you there. We need to get the diagnosis though, and that will take a couple of weeks. Then we can speak to them and get some concrete information. There are other places too, and then in September the Council is obliged to send you to a special communications nursery where you will get expert help.
We drove over to get Mummy at around 1pm, and you loved running around her new office. Obviously, you went straight to the phone and called from one office to another, and you stole Mummy's boss's calculator. I put some empty cardboard boxes in the car so we can make a ship or a plane or both when we got home. It'll give me an excuse to be a kid again.
Mummy was delighted to see she works opposite Oasis now, the frozen yogurt cafe. We went in and you managed to negotiate some gummy bears. You wolfed them down and then we absolutely uncontrollable after. You just wanted gummy bears. You would sit and eat your frozen yogurt, and just ran around being really difficult. Eventually, we just packed up the tub and tried to get you in the car.
We took you over to Safta's for the afternoon so we could rest and talk. Mummy was exhausted and I am becoming more and more convinced that you need more full-on interaction, I feel a little uncomfortable leaving you to your own devices the more I think about it. We decided to watch a movie that Mummy had already seen a while ago, and we had been wanting and not wanting to watch for ages. It was called "After Thomas", it's the true story of a little boy called Kyle with autism whose parents got him a dog which helped him connect to his family and the world around him. He called him Thomas because Thomas was his favourite toy, not unlike my little man. There were lots of other things that made me think of you, they way he dropped to the floor for one, the way we call you and you don't look round, the way you ended up being on your on in nursery. But Kyle was much more severe than you, he never laughed or smiled. You talk non-stop in comparison. He was older, in a time when very little was known about autism, and he made such a huge leap with the help of his Golden Retriever. I was all shaken up after the end of the film, and Mummy asked me how I was feeling. Quite the most impossible and ridiculous question I have ever been asked maybe. I just couldn't even think about what an answer would sound like. I just started to cry. I'm not sure what I was feeling, or maybe it would be closer to say I wasn't sure what I wasn't feeling. My emotions were all over the place, I just felt so absolutely desparate. And sad, and angry, and heartbroken, and guilty, and frustrated, and frantic. And in it all, I still loved my little boy, and the film made me think that we could climb the biggest mountain together. It gave me hope that if something as simple as the love of a dog could open such a firmly closed door, then what me and Mummy have for you could smash straight through it like a sledgehammer. But while I work out the things we need to do, maybe we should get you a puppy.
We picked you up from Safta's, and brought you home. You were exhausted. I went to make coffee for me and Mummy and you cuddled up to her. I came back with it and you were sound asleep hugging her. We left you there for a bit, you have the loveliest cuddles.
Thursday, 29 January 2009
The first step backwards
Mummy wanted to tell you we were going to see a nice lady today. I wanted you to know that you were going to see a nice doctor. I don’t really know why. Something in me wants you to work with us on this. I don’t want to trick you into all the achievements you make. And I want you to see that doctors are going to help you so much and they are all nice people. We are going to need lots of them and lots of help.
We parked in the back of the house Mummy grew up in, Sheshet Hayamim 14. We put the car in the car park behind the building where she used to play when she was your age. It is ugly and dirty now, a skip for the supermarket wide open at the back with poor people coming raiding it for only partially-rotten fruit they could buy for a shekel across the road in the market and not risk disease. It made me think that somewhere in all this we were very lucky. You have a mum and dad who love you more than life itself. We have a bit of money and an ability to pay for the best treatments and advice. And you have a daddy who will do whatever it takes to give you everything in this world. The same as I planned to do when I came here to bring you up on the beach with kites and sandcastles and football in the park. We’ll still have all those things, and I’ve just become more determined than ever to stick to that plan.
We walked to the clinic and you stopped in front of me and ask me to “go up”, so I lifted you on my shoulders. You buried your hands behind my neck so I could never lift you down again. Very sly. Then when you saw the clinic you dismounted, sliding down my back like I was part of your playground and you ran to the door. I’m glad you liked it that much the first time, and you ran around like a madman counting the numbers on the doctors’ doors. I was impressed that you remembers that there was “five alef” down the bottom of the stairs. Quite a memory, but I suspect just the tip of the iceberg. You found the play room at the back and grabbed the sponge ball. You kicked it for a bit, and then picked it up and ran over to the basketball hoop, slammed it in the hole and exclaimed with joy “miskhak kadursal”. In all of this, you’re just a little boy who loves football and basketball like his daddy. We’ll have a lot of hoops to shoot in future, and if you think I’m going to cut you any slack, well that would be just plain foolish.
The psychologist covered pretty much the same topics as before with Dr Pozner. You loved the room, there were so many toys and you flitted back and forth, they all ended up on the floor but you were such a good boy. I tried to play with you, the psychologist saw you putting a little boxing glove on so she said we should play fight. I even told you for the one and only time in your life you could punch me on the nose. But you didn’t, and I think I need to remind you that the offer have been removed. You were just as good as before, but tired, and when we had to go you went into a little tantrum. The doctor offered you a balloon exchange for the big toy you were trying to steal, but I sensed a nightmare ahead. You and balloons always end in tears, you try and burst them, then you ask me to put them back together. I’m good, but not that good. We blew up the balloon and let it fly off for a bit and you thought it was hilarious, though when we really had to go you went into meltdown mode. You wanted an orange balloon and all the way home we had tears rolling down your face.
I was rattled by the psychologist. As positive as I was after the doctor on Tuesday, I was deflated after seeing her today. She just asked all the same questions as Dr Pozner, though she didn't try and interact with you herself very much, she just let me do it. She's got two more sessions to work through a big checklist. I'm not sure whether it was the fact that you were very tired after the lack of sleep last night, or the fact that she seemed to say we wouldn't get a nursery place till the next school year in September, or the fact that I want to get started helping you and I don't have any tools.
After your tears in the car, I was a little shaken when I came home, a little down. I called my mum and told her that some books were coming to her and that she should read as much as she could before putting a package in the post for me. I told her about the meeting with the psychologist, and said I didn’t know if I wanted her to catch you on a good day or a bad one. Did I want her to find you as wonderful as I do, or did I want her to see a huge manifestation of problems that only appear occasionally so we can have the full weight of the health service thrown at us? I guess my head sees the latter as more helpful. We’re going to need everything we can get our hands on at this stage.
We picked mummy up from her new office today. It’s much closer to home and that will help us no end. She spoke to her boss again today and explained how important to her you are and how she will do everything to help you. He agreed. I hope Mummy's boss doesn't get upset when she needs to do the things she needs to do to help you grow up into a little smasher.
Mummy has been reading the first few pages of the book and she has said how hopeful she is about everything. She translated a few bits for me, about how the DIR/Floortime method needs to be tailored to each child, and how the results can be amazing. She read me the story of David, who was diagnosed just a little younger than you, who had similar symptoms, though I suspect is more severely affected. She explained the huge progress he made with special attention, and you are going to get lots. I’ve got a lifetime to give.
She explained to me how people used to think that people diagnosed with autism couldn’t love, couldn’t form human attachments, couldn’t empathise. We looked at each other and we knew what the other was thinking. You know exactly what love is. You love me so much, more than any kid I have ever seen love his daddy. If that is not love, well, as your mummy says, then I’m a cookie-jar. And if that love you show me is a blip for the statistics, or one in the eye for the theorists, so be it. And you love your mummy as much as she could ever dream of too. I’ve no idea how, since you are supposed to be unable to attach to people. And when we leave, you are so sad. You call out for us to come back, you cry tears of love, not anger. You run to me and say “Mummy gone, where's Mummy, Mummy where are you?” like you might never see her again. Then she told me that they now think that some children do form attachments and it is entirely comparable to children without autism.
I went to the basketball tonight. I was going to talk to Eyal, the person you first smiled at when we were at the Final Four in Prague, a big beaming toothless smile as I sang you Beatles songs. But just for a couple of hours I fancied talking about Maccabi’s brilliant offense, laughing and clapping and cheering and singing. I thought of you in your Maccabi t-shirt, and the game this morning in the clinic where you just kept dunking and saying “Accabi Vishy”, and tonight in the car when I told you I was going to the game, and you said “Accabi Tel Aviv”, you said it properly. I was so proud. My brainwashing is certainly working. We’ll go together every Thursday soon, a couple more years and we’ll get you a season ticket. You can go and sit with all the crazies in Gate 11 though. I saw you at the football, running around clapping like a lunatic. I’ll be far too stressed to sit next to you, just buy a drum and go sit with the Ultras.
Mummy said you were an angel walking home from Safta’s, she didn’t need a buggy. She told you that you needed to go home and you didn’t run off, didn’t drop to the floor and dangle. You just came home like a good little boy. And then, when you got to the door and opened it to see I wasn’t at home you cried and cried. You called for me, you asked for me. If that isn’t love, well, I’ll take it any day of the week.
We parked in the back of the house Mummy grew up in, Sheshet Hayamim 14. We put the car in the car park behind the building where she used to play when she was your age. It is ugly and dirty now, a skip for the supermarket wide open at the back with poor people coming raiding it for only partially-rotten fruit they could buy for a shekel across the road in the market and not risk disease. It made me think that somewhere in all this we were very lucky. You have a mum and dad who love you more than life itself. We have a bit of money and an ability to pay for the best treatments and advice. And you have a daddy who will do whatever it takes to give you everything in this world. The same as I planned to do when I came here to bring you up on the beach with kites and sandcastles and football in the park. We’ll still have all those things, and I’ve just become more determined than ever to stick to that plan.
We walked to the clinic and you stopped in front of me and ask me to “go up”, so I lifted you on my shoulders. You buried your hands behind my neck so I could never lift you down again. Very sly. Then when you saw the clinic you dismounted, sliding down my back like I was part of your playground and you ran to the door. I’m glad you liked it that much the first time, and you ran around like a madman counting the numbers on the doctors’ doors. I was impressed that you remembers that there was “five alef” down the bottom of the stairs. Quite a memory, but I suspect just the tip of the iceberg. You found the play room at the back and grabbed the sponge ball. You kicked it for a bit, and then picked it up and ran over to the basketball hoop, slammed it in the hole and exclaimed with joy “miskhak kadursal”. In all of this, you’re just a little boy who loves football and basketball like his daddy. We’ll have a lot of hoops to shoot in future, and if you think I’m going to cut you any slack, well that would be just plain foolish.
The psychologist covered pretty much the same topics as before with Dr Pozner. You loved the room, there were so many toys and you flitted back and forth, they all ended up on the floor but you were such a good boy. I tried to play with you, the psychologist saw you putting a little boxing glove on so she said we should play fight. I even told you for the one and only time in your life you could punch me on the nose. But you didn’t, and I think I need to remind you that the offer have been removed. You were just as good as before, but tired, and when we had to go you went into a little tantrum. The doctor offered you a balloon exchange for the big toy you were trying to steal, but I sensed a nightmare ahead. You and balloons always end in tears, you try and burst them, then you ask me to put them back together. I’m good, but not that good. We blew up the balloon and let it fly off for a bit and you thought it was hilarious, though when we really had to go you went into meltdown mode. You wanted an orange balloon and all the way home we had tears rolling down your face.
I was rattled by the psychologist. As positive as I was after the doctor on Tuesday, I was deflated after seeing her today. She just asked all the same questions as Dr Pozner, though she didn't try and interact with you herself very much, she just let me do it. She's got two more sessions to work through a big checklist. I'm not sure whether it was the fact that you were very tired after the lack of sleep last night, or the fact that she seemed to say we wouldn't get a nursery place till the next school year in September, or the fact that I want to get started helping you and I don't have any tools.
After your tears in the car, I was a little shaken when I came home, a little down. I called my mum and told her that some books were coming to her and that she should read as much as she could before putting a package in the post for me. I told her about the meeting with the psychologist, and said I didn’t know if I wanted her to catch you on a good day or a bad one. Did I want her to find you as wonderful as I do, or did I want her to see a huge manifestation of problems that only appear occasionally so we can have the full weight of the health service thrown at us? I guess my head sees the latter as more helpful. We’re going to need everything we can get our hands on at this stage.
We picked mummy up from her new office today. It’s much closer to home and that will help us no end. She spoke to her boss again today and explained how important to her you are and how she will do everything to help you. He agreed. I hope Mummy's boss doesn't get upset when she needs to do the things she needs to do to help you grow up into a little smasher.
Mummy has been reading the first few pages of the book and she has said how hopeful she is about everything. She translated a few bits for me, about how the DIR/Floortime method needs to be tailored to each child, and how the results can be amazing. She read me the story of David, who was diagnosed just a little younger than you, who had similar symptoms, though I suspect is more severely affected. She explained the huge progress he made with special attention, and you are going to get lots. I’ve got a lifetime to give.
She explained to me how people used to think that people diagnosed with autism couldn’t love, couldn’t form human attachments, couldn’t empathise. We looked at each other and we knew what the other was thinking. You know exactly what love is. You love me so much, more than any kid I have ever seen love his daddy. If that is not love, well, as your mummy says, then I’m a cookie-jar. And if that love you show me is a blip for the statistics, or one in the eye for the theorists, so be it. And you love your mummy as much as she could ever dream of too. I’ve no idea how, since you are supposed to be unable to attach to people. And when we leave, you are so sad. You call out for us to come back, you cry tears of love, not anger. You run to me and say “Mummy gone, where's Mummy, Mummy where are you?” like you might never see her again. Then she told me that they now think that some children do form attachments and it is entirely comparable to children without autism.
I went to the basketball tonight. I was going to talk to Eyal, the person you first smiled at when we were at the Final Four in Prague, a big beaming toothless smile as I sang you Beatles songs. But just for a couple of hours I fancied talking about Maccabi’s brilliant offense, laughing and clapping and cheering and singing. I thought of you in your Maccabi t-shirt, and the game this morning in the clinic where you just kept dunking and saying “Accabi Vishy”, and tonight in the car when I told you I was going to the game, and you said “Accabi Tel Aviv”, you said it properly. I was so proud. My brainwashing is certainly working. We’ll go together every Thursday soon, a couple more years and we’ll get you a season ticket. You can go and sit with all the crazies in Gate 11 though. I saw you at the football, running around clapping like a lunatic. I’ll be far too stressed to sit next to you, just buy a drum and go sit with the Ultras.
Mummy said you were an angel walking home from Safta’s, she didn’t need a buggy. She told you that you needed to go home and you didn’t run off, didn’t drop to the floor and dangle. You just came home like a good little boy. And then, when you got to the door and opened it to see I wasn’t at home you cried and cried. You called for me, you asked for me. If that isn’t love, well, I’ll take it any day of the week.
Wednesday, 28 January 2009
Getting some focus
Two dogs. Some parents might not be so proud of such an answer, but the world has changed just a little lately. You’ve always loved dogs; you’ll chase and talk to every one you see. You gaze out of the window and talk to Bella, making me terrified you might just jump to go and see her. But then, you are far too careful, far too cautious. 
We were at the new park that has opened on the way to Safta’s flat. We played basketball there a few days ago and you climbed up to slam dunk from above. I thought nothing could make a dad happier than when I put the ball in your hand and you dunked and grabbed onto the ring, hanging like a little Michael Jordan. When we went back today a man was walking his dogs with his son. I asked you, like I always ask you, to look at the dogs. You did, so I asked you how many dogs there were. Two dogs. Just like that. And you looked at me with such a grin. There were two dogs. Little steps.
We’d just been to the Post Office to pick up a parcel. Your favourite TV show on DVD, sent by Nanny to you could watch Titch do all his cheeky things in English. The best bit about it is that I can watch Titch and know why you are laughing too.
I went online earlier and bought the same book as Mummy is reading, Engaging Autism by Stanley Greenspan. I picked up two more, and I’m sending them via Nanny so she can read them too. She is so worried, I know she is. I remember the wars she fought for me, every battle to the death. And she’d do the same for you, except she can’t. But she'll do everything she can, she loves you more than you can ever imagine. And when you saw her in December, late at night, after a five-hour flight, you covered your eyes with your hands and peeked through your fingers to see if she was really there. And when she went to work in the morning, you ran around the house calling her, asking me where she had gone and crying if she didn't say goodbye properly. And you blow kisses down the phone when you hear her voice. You're two and three quarters. How else is a little boy supposed to show his nanny he loves her.
I ordered another couple of books too. One called When Babies Read on hyperlexia by Peter Jensen and Audra Jensen. I don't think it is entirely regular that little boys of 15 months can count to 2, and understand that when you take a biscuit, one is one, and the second is two. I don't think it is regular that at 18 months you said "ba, too, na"'..."one, two, three", that you could count to five at 20 months and then one day just sprang 6, 7, 8, 9 and 10 on us as you were climbing up a ladder in the playground. Then you counted to twenty, and then thirty, then to whatever you liked. You said "twenteen", and for a while 21 was twelve, but I just thought that was cute. You thought for a bit 90 came after 59, but then one day you wanted me to go through the channels on the TV, and every time we went up on you asked for the next number. You got bored after 100 and something. You were about two and a half. Apparently, you were perfectly able to do that in Hebrew, you knew we worked on base 10. You said 10, 20, 30, 40 all the way to 100 at two and a half, you could count in even numbers, odd numbers. Someone is going take that one day and give you a very important job. And then of course, you sort of taught yourself to read at two and a half. We flicked the channels looking for something for you to watch on TV. We went to BBC Prime but there was no picture - the signal must have been down. The banner telling us what was on was there though. "06:30 Big Cook, Little Cook". No picture. Just the words. And you said "cook". I'd suspected as much for days, I read you your Thomas book, and you pointed to words on the page, always the right word, you pointed to bridge and said "bridge", you pointed to Thomas and "Thomas". You smart little thing. You know the difference between Annie and Clarabel even though I still don't.
I also ordered the book that Dr Pozner recommended by Stanley Greenspan, Serena Wieder and Robin Simons, The Child With Special Needs. Mummy couldn't find it in Hebrew when we looked, but we'll find it by the time it arrived. It is a little scary for me to be stuck in a place where everything is in a language that you speak better than me. They'll come through in a week or so, and I'll be able to start working. We're going to be busy, me and you.
After the playground we went and picked up Mummy and came back. You couldn't get your Titch DVD quick enough, you went straight over to the TV and tried to put it in the DVD player, even though there was a Thomas DVD there already.
You sat like a little angel at the Dora table that Benny left behind when he left Israel with the future love of your life, Michelle. And you sat and watched, glued to the screen. You looked over every few minutes and just said "happy, happy" or grinned that magic little scrunched up grin you have. And just for once you didn't need to say "more Titch", because there was more Titch every time. 
I sent Nanny an sms or two to keep her posted on the new present. I told her how you said "matanot, matanot" when the postman gave you the parcel, and how I helped you get through the package to the present inside. I told her you opened it straight away, took the DVD out and told me to play it in the middle of the Parcel Office. The package had Ben Harrison on it. You have your own mail now, you're getting such a big boy.
Then after 3 episodes you said "more Titch". You ran around shouting "remote" and you brought me the red one for the cable. I told you this was a special Titch, and we needed the black one for the DVD and you went and got it. Surprisingly first time! I realised you didn't want more Titch, you wanted me to put "The Camp Fire" on again, the one where Peter and Mary, or Yoni and Tali as you always call them, don't want to play cowboys with Titch, and Saba comes over to trim the hedge. Titch helps him like you always try and help me when I do DIY. Then like all Grandads, he takes Titch off to build a bonfire with the clippings and they have sausages on the camp fire. I'm going to get you a little cowboy hat for you to wear I think. Nanny loved hearing all the little stories about how you are growing up into a great little boy. She's not having this for a second.
We were at the new park that has opened on the way to Safta’s flat. We played basketball there a few days ago and you climbed up to slam dunk from above. I thought nothing could make a dad happier than when I put the ball in your hand and you dunked and grabbed onto the ring, hanging like a little Michael Jordan. When we went back today a man was walking his dogs with his son. I asked you, like I always ask you, to look at the dogs. You did, so I asked you how many dogs there were. Two dogs. Just like that. And you looked at me with such a grin. There were two dogs. Little steps.We’d just been to the Post Office to pick up a parcel. Your favourite TV show on DVD, sent by Nanny to you could watch Titch do all his cheeky things in English. The best bit about it is that I can watch Titch and know why you are laughing too.
I went online earlier and bought the same book as Mummy is reading, Engaging Autism by Stanley Greenspan. I picked up two more, and I’m sending them via Nanny so she can read them too. She is so worried, I know she is. I remember the wars she fought for me, every battle to the death. And she’d do the same for you, except she can’t. But she'll do everything she can, she loves you more than you can ever imagine. And when you saw her in December, late at night, after a five-hour flight, you covered your eyes with your hands and peeked through your fingers to see if she was really there. And when she went to work in the morning, you ran around the house calling her, asking me where she had gone and crying if she didn't say goodbye properly. And you blow kisses down the phone when you hear her voice. You're two and three quarters. How else is a little boy supposed to show his nanny he loves her.
I ordered another couple of books too. One called When Babies Read on hyperlexia by Peter Jensen and Audra Jensen. I don't think it is entirely regular that little boys of 15 months can count to 2, and understand that when you take a biscuit, one is one, and the second is two. I don't think it is regular that at 18 months you said "ba, too, na"'..."one, two, three", that you could count to five at 20 months and then one day just sprang 6, 7, 8, 9 and 10 on us as you were climbing up a ladder in the playground. Then you counted to twenty, and then thirty, then to whatever you liked. You said "twenteen", and for a while 21 was twelve, but I just thought that was cute. You thought for a bit 90 came after 59, but then one day you wanted me to go through the channels on the TV, and every time we went up on you asked for the next number. You got bored after 100 and something. You were about two and a half. Apparently, you were perfectly able to do that in Hebrew, you knew we worked on base 10. You said 10, 20, 30, 40 all the way to 100 at two and a half, you could count in even numbers, odd numbers. Someone is going take that one day and give you a very important job. And then of course, you sort of taught yourself to read at two and a half. We flicked the channels looking for something for you to watch on TV. We went to BBC Prime but there was no picture - the signal must have been down. The banner telling us what was on was there though. "06:30 Big Cook, Little Cook". No picture. Just the words. And you said "cook". I'd suspected as much for days, I read you your Thomas book, and you pointed to words on the page, always the right word, you pointed to bridge and said "bridge", you pointed to Thomas and "Thomas". You smart little thing. You know the difference between Annie and Clarabel even though I still don't.
I also ordered the book that Dr Pozner recommended by Stanley Greenspan, Serena Wieder and Robin Simons, The Child With Special Needs. Mummy couldn't find it in Hebrew when we looked, but we'll find it by the time it arrived. It is a little scary for me to be stuck in a place where everything is in a language that you speak better than me. They'll come through in a week or so, and I'll be able to start working. We're going to be busy, me and you.
After the playground we went and picked up Mummy and came back. You couldn't get your Titch DVD quick enough, you went straight over to the TV and tried to put it in the DVD player, even though there was a Thomas DVD there already.
You sat like a little angel at the Dora table that Benny left behind when he left Israel with the future love of your life, Michelle. And you sat and watched, glued to the screen. You looked over every few minutes and just said "happy, happy" or grinned that magic little scrunched up grin you have. And just for once you didn't need to say "more Titch", because there was more Titch every time. 
I sent Nanny an sms or two to keep her posted on the new present. I told her how you said "matanot, matanot" when the postman gave you the parcel, and how I helped you get through the package to the present inside. I told her you opened it straight away, took the DVD out and told me to play it in the middle of the Parcel Office. The package had Ben Harrison on it. You have your own mail now, you're getting such a big boy.Then after 3 episodes you said "more Titch". You ran around shouting "remote" and you brought me the red one for the cable. I told you this was a special Titch, and we needed the black one for the DVD and you went and got it. Surprisingly first time! I realised you didn't want more Titch, you wanted me to put "The Camp Fire" on again, the one where Peter and Mary, or Yoni and Tali as you always call them, don't want to play cowboys with Titch, and Saba comes over to trim the hedge. Titch helps him like you always try and help me when I do DIY. Then like all Grandads, he takes Titch off to build a bonfire with the clippings and they have sausages on the camp fire. I'm going to get you a little cowboy hat for you to wear I think. Nanny loved hearing all the little stories about how you are growing up into a great little boy. She's not having this for a second.
Tuesday, 27 January 2009
The first day of the rest of our lives...
I just dropped your mum off at work. We had been to have ice-cream for lunch; I remembered what Tom Hanks said they said in the Godfather: “go to the mattresses”: Though marzipan and honey ice-cream has no springs or a memory-foam top, Dr Lek Ice Cream Parlour seemed the right place to be. Something about going back to basics, getting my feet on the ground, surrounding myself with things that you were meant to spend your pocket money on, memories of a life that was simple. It is probably just called comfort-eating by others. But me and you love ice-cream. And you don’t need to comfort eat, you just need to eat yours as fast as you can and then open your big brown eyes at me and ask for what’s left of mine. And sometimes you are so smart and sly that you realise that in this world, what is yours is yours and what is mine is yours too, and you wade into mine way before you polish off your own.
The car stereo is usually quite intermittent, I really need to clean the lens on the CD. Right now it’s playing fine. Gene – Olympian. One of the songs I could play a hundred times in a row and still sense a smile break out across my face when that first line gets sung. I remember the first time I heard it: my studio flat in Hayes in 1995, I’d bought it for £4 at the local car boot sale. I took your mum to see it performed live many, many times when we lived in London. I always remember the feeling as the crescendo rises in the song, the crowd, the band, the sweat, the noise. I used to live for that feeling, hedonistically bouncing between the Astoria, Kentish Town and Shepherds’ Bush.
Then you came into my world and suddenly all the beauty and wonder I ever needed was there in my arms. From the second that the nurse passed me a bundle of green blankets, with a little scrunched up face poking out and a nose that could only be mine and big brown eyes that could only be your mum’s. The midwife was so happy to say you had dimples. I thought your mum would be so proud that you had two beautiful dimpled cheeks like her, but then I realised how much she loved me when she was happier to exclaim you only had one. On the left cheek. Just like your daddy. I read somewhere that it is no mistake of nature that children are born looking like their fathers, they do everything they can over those nine months to make sure the big brute that fathered you will crawl out of his cave to club to death anyone who even thinks about hurting you. It obviously worked.
I feel like crying ever time I think about those few moments. Suddenly, at 9:06am I went from being me to the person I was always supposed to be. My whole world reconstructed in a second, my dreams forgotten, new ones just exploding in my mind. Not that you would ever need my help in life, not with those lashes, you’ll have them eating out of your tiny little wrinkled hands.
My eyes are full of tears, I can hardly see. I can hardly think. I reach to turn Olympian down. I’ve never done that, never in my life. Then I turn it off. I can’t think straight, I can’t think at all. I just want to go home and cry and cry. I’m going to leave you with Safta rather than pick you up, you never need to know how sad I am, you just need to know how much I love you and how proud I am of you and all the wonderful things you do.
You were so fantastic with the doctor today. You surpassed my expectations, she asked you to stick your tongue out and you did, to close your eyes and you scrunched up your face like the little magical boy you are, though I am sure you could still see through the little gap you left. She blew bubbles for you, and you laughed and went and popped them, and you exclaimed “ballonim” with such happiness I could have cried. And when she wanted to frustrate you, she screwed the lid back on the bottle. I told her she would have to try much harder than that, we weren’t dealing with a regular little boy and you proved me right. And the fact that she wouldn’t blow bubbles any more for you didn’t frustrate you either, you just worked out how to blow your own, and you blew your first bubble ever, just on cue. She gave you a puzzle with animals in and you put them all back in place, named every one and sang a beautiful song about zebras in pyjamas. I didn’t know it but mummy and Safta joined in with you and the doctor. She asked me and mummy lots of questions, we answered as honestly as we could.
We told her proudly that you learned eventually to follow our gaze and our fingers to the object we were showing you, and that you point yourself to show us things and we were so happy that you learnt these things. Then she asked where your eyes went when you pointed. We said you looked at the object. She asked mummy to point, and mummy pointed, and she looked at the object too. Then she looked at the doctor, and then back at the object. And that was it. The difference between you and all those other little boys and girls who take hours and still fail to learn what you can do in a few seconds. You can count past a hundred in two languages, you know more words in English than most English children, more words in Hebrew than most Hebrew children, you have a photographic memory, you can stack 15 blocks on top of each other, you only need to be in a place once before you know the way there from everywhere you have ever been. But you don’t know that there is a triangle when you show something. You don’t know that you are showing something to someone. You just show the thing. You don’t make sure that I’m looking, you don’t need to know that I am looking. And no matter that you are the brightest kid I have ever seen, no matter that my mum says that you blow me at that age away, no matter that the little genius that was your mum at two and three quarters had nothing on you, that triangle is more important than any of the amazing things that you stun me with every day.
She told us what we knew already; she was very vague, very non-committal but she talked of you being on a spectrum. You fit somewhere between the extremes though she wanted to leave the specific diagnosis to the psychologist we will see three times in the next couple of weeks. She said that you are so bright that you will make massive progress, that you had already learnt to make huge steps without any assistance and with the right help you will blossom into the fantastic person I already know you are. She gave us lots of advice, lots of hope. We shouldn’t put you back in the nursery that you were in, the nursery that couldn’t love you like I love you, we should find something smaller, we could get you an assistant, and that if things go well in the next three years you could go to regular school with everyone else. You will probably always struggle with relationships, and you might get obsessive when you hit your teenage years, but you are smart, and you are showing so many positive signs, speech, eye-contact, intelligence, abilities to join in with singing, that we should be optimistic for everything in your future.
We left with a book recommendation and a broken heart. I drove through a red light without even thinking and got stopped by the police. Somehow I didn’t get a ticket, I’m not sure if she bought my story, but I don’t think you can fake the sadness I had in my eyes. Maybe I’m going to take that luck with me everywhere I go from now on. Maybe I will.
I took you to Safta’s home, I thought she was exactly the person you needed right then, not Daddy. I love you too much to ever let you see how hurt I am. Nothing could phase Safta. Every second with you is a blessing for her, and that is what you needed while I worked out how to put the floor back in my world. So I drove Mummy to work, and we decided we need a plan. I’m good at plans, and now it was time to put all those brains I was supposed to have to work.
I spoke to a couple of organisations when I got home. I didn’t cry, I figured that yesterday I had the most magical boy in the world. Today, the same little boy woke up at 6:30am and asked me to cuddle him, the same little boy still thought he could run past me without me grabbing him at the doctors, and the same little boy still burst into fits of laughter when I caught him every time. Clearly, I had only things to be happy about, the tears I’ll save for a rainy day.
The Mifne Center asked me to send them a video of you, half an hour of you playing and eating and being you. I’ll set something up soon, maybe at the weekend. They can evaluate whether they think they can help. I tried to call Tomi to see what they could help us with, but it diverted to an answerphone in the USA. I’ll try again tomorrow. There seems to be several approaches that all seem to bear fruit most of the time. I suspect that I’ll know instinctively which one works best for you. You’re a very special kid. You’ll pick up things in a flash.
I went to pick up mummy from the bus stop, and we drove to get you from Safta’s. We both looked at each other like the we didn’t know what we were going to do, helpless, weak, hopeless. Then Safta opened the door, and you were playing the xylophone and the tambourine and you were just so happy to see us that we remembered that you were a little boy. You weren’t a diagnosis, you weren’t a syndrome, you weren’t a problem. You were our little boy. Ben, the funniest and most loving little boy I’ve ever met. The only boy I know to make kissing his daddy into an hilarious game. Why kiss when you can blow raspberries?
We rode the lift for a bit, you love riding the lift, you always seem so astonished that it does say 17 on the floor when you press 17 on the buttons. And then when we got to the ground floor we knelt down to give you a hug, and you took my head and mummy’s head and said “kiss” as you pushed us together. You’re smarter than the pair of us put together. Nothing made more sense to me than forgetting this last year of war. And as you grow up, I hope you never remember what we put you through in all our stupidity. I’ll do my best to forget it and I hope you can too. I’ve got so many more important things to think about now. And I’ll always love you for sorting out with one little gesture what your parents couldn’t work out with all their efforts in a year.
The car stereo is usually quite intermittent, I really need to clean the lens on the CD. Right now it’s playing fine. Gene – Olympian. One of the songs I could play a hundred times in a row and still sense a smile break out across my face when that first line gets sung. I remember the first time I heard it: my studio flat in Hayes in 1995, I’d bought it for £4 at the local car boot sale. I took your mum to see it performed live many, many times when we lived in London. I always remember the feeling as the crescendo rises in the song, the crowd, the band, the sweat, the noise. I used to live for that feeling, hedonistically bouncing between the Astoria, Kentish Town and Shepherds’ Bush.
Then you came into my world and suddenly all the beauty and wonder I ever needed was there in my arms. From the second that the nurse passed me a bundle of green blankets, with a little scrunched up face poking out and a nose that could only be mine and big brown eyes that could only be your mum’s. The midwife was so happy to say you had dimples. I thought your mum would be so proud that you had two beautiful dimpled cheeks like her, but then I realised how much she loved me when she was happier to exclaim you only had one. On the left cheek. Just like your daddy. I read somewhere that it is no mistake of nature that children are born looking like their fathers, they do everything they can over those nine months to make sure the big brute that fathered you will crawl out of his cave to club to death anyone who even thinks about hurting you. It obviously worked.
I feel like crying ever time I think about those few moments. Suddenly, at 9:06am I went from being me to the person I was always supposed to be. My whole world reconstructed in a second, my dreams forgotten, new ones just exploding in my mind. Not that you would ever need my help in life, not with those lashes, you’ll have them eating out of your tiny little wrinkled hands.
My eyes are full of tears, I can hardly see. I can hardly think. I reach to turn Olympian down. I’ve never done that, never in my life. Then I turn it off. I can’t think straight, I can’t think at all. I just want to go home and cry and cry. I’m going to leave you with Safta rather than pick you up, you never need to know how sad I am, you just need to know how much I love you and how proud I am of you and all the wonderful things you do.
You were so fantastic with the doctor today. You surpassed my expectations, she asked you to stick your tongue out and you did, to close your eyes and you scrunched up your face like the little magical boy you are, though I am sure you could still see through the little gap you left. She blew bubbles for you, and you laughed and went and popped them, and you exclaimed “ballonim” with such happiness I could have cried. And when she wanted to frustrate you, she screwed the lid back on the bottle. I told her she would have to try much harder than that, we weren’t dealing with a regular little boy and you proved me right. And the fact that she wouldn’t blow bubbles any more for you didn’t frustrate you either, you just worked out how to blow your own, and you blew your first bubble ever, just on cue. She gave you a puzzle with animals in and you put them all back in place, named every one and sang a beautiful song about zebras in pyjamas. I didn’t know it but mummy and Safta joined in with you and the doctor. She asked me and mummy lots of questions, we answered as honestly as we could.
We told her proudly that you learned eventually to follow our gaze and our fingers to the object we were showing you, and that you point yourself to show us things and we were so happy that you learnt these things. Then she asked where your eyes went when you pointed. We said you looked at the object. She asked mummy to point, and mummy pointed, and she looked at the object too. Then she looked at the doctor, and then back at the object. And that was it. The difference between you and all those other little boys and girls who take hours and still fail to learn what you can do in a few seconds. You can count past a hundred in two languages, you know more words in English than most English children, more words in Hebrew than most Hebrew children, you have a photographic memory, you can stack 15 blocks on top of each other, you only need to be in a place once before you know the way there from everywhere you have ever been. But you don’t know that there is a triangle when you show something. You don’t know that you are showing something to someone. You just show the thing. You don’t make sure that I’m looking, you don’t need to know that I am looking. And no matter that you are the brightest kid I have ever seen, no matter that my mum says that you blow me at that age away, no matter that the little genius that was your mum at two and three quarters had nothing on you, that triangle is more important than any of the amazing things that you stun me with every day.
She told us what we knew already; she was very vague, very non-committal but she talked of you being on a spectrum. You fit somewhere between the extremes though she wanted to leave the specific diagnosis to the psychologist we will see three times in the next couple of weeks. She said that you are so bright that you will make massive progress, that you had already learnt to make huge steps without any assistance and with the right help you will blossom into the fantastic person I already know you are. She gave us lots of advice, lots of hope. We shouldn’t put you back in the nursery that you were in, the nursery that couldn’t love you like I love you, we should find something smaller, we could get you an assistant, and that if things go well in the next three years you could go to regular school with everyone else. You will probably always struggle with relationships, and you might get obsessive when you hit your teenage years, but you are smart, and you are showing so many positive signs, speech, eye-contact, intelligence, abilities to join in with singing, that we should be optimistic for everything in your future.
We left with a book recommendation and a broken heart. I drove through a red light without even thinking and got stopped by the police. Somehow I didn’t get a ticket, I’m not sure if she bought my story, but I don’t think you can fake the sadness I had in my eyes. Maybe I’m going to take that luck with me everywhere I go from now on. Maybe I will.
I took you to Safta’s home, I thought she was exactly the person you needed right then, not Daddy. I love you too much to ever let you see how hurt I am. Nothing could phase Safta. Every second with you is a blessing for her, and that is what you needed while I worked out how to put the floor back in my world. So I drove Mummy to work, and we decided we need a plan. I’m good at plans, and now it was time to put all those brains I was supposed to have to work.
I spoke to a couple of organisations when I got home. I didn’t cry, I figured that yesterday I had the most magical boy in the world. Today, the same little boy woke up at 6:30am and asked me to cuddle him, the same little boy still thought he could run past me without me grabbing him at the doctors, and the same little boy still burst into fits of laughter when I caught him every time. Clearly, I had only things to be happy about, the tears I’ll save for a rainy day.
The Mifne Center asked me to send them a video of you, half an hour of you playing and eating and being you. I’ll set something up soon, maybe at the weekend. They can evaluate whether they think they can help. I tried to call Tomi to see what they could help us with, but it diverted to an answerphone in the USA. I’ll try again tomorrow. There seems to be several approaches that all seem to bear fruit most of the time. I suspect that I’ll know instinctively which one works best for you. You’re a very special kid. You’ll pick up things in a flash.
I went to pick up mummy from the bus stop, and we drove to get you from Safta’s. We both looked at each other like the we didn’t know what we were going to do, helpless, weak, hopeless. Then Safta opened the door, and you were playing the xylophone and the tambourine and you were just so happy to see us that we remembered that you were a little boy. You weren’t a diagnosis, you weren’t a syndrome, you weren’t a problem. You were our little boy. Ben, the funniest and most loving little boy I’ve ever met. The only boy I know to make kissing his daddy into an hilarious game. Why kiss when you can blow raspberries?
We rode the lift for a bit, you love riding the lift, you always seem so astonished that it does say 17 on the floor when you press 17 on the buttons. And then when we got to the ground floor we knelt down to give you a hug, and you took my head and mummy’s head and said “kiss” as you pushed us together. You’re smarter than the pair of us put together. Nothing made more sense to me than forgetting this last year of war. And as you grow up, I hope you never remember what we put you through in all our stupidity. I’ll do my best to forget it and I hope you can too. I’ve got so many more important things to think about now. And I’ll always love you for sorting out with one little gesture what your parents couldn’t work out with all their efforts in a year.
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