First Day at the Baker Centre

You didn't wake up this morning because you didn't go to bed...or something like that.

You woke at 11pm in bed, dressed, wet from pee and sobbing. I ran to you and idea why you were sobbing. Maybe you’d had a bad dream, maybe you’d not realised where you were, maybe you had huge withdrawal pangs.

I thought you would go back to sleep – you did the time before when you crashed mid-afternoon (March 4 I think). No, you were awake, and not going back to sleep. I tried, but no success, so I went to sleep in the lounge, and thought Mummy would be better at getting you to sleep. As it turned out, she wasn’t and you were still awake, playful and watching TV when I came back at 3.15am. I told Mummy to leave you with me, and after about 45mins I think you were either exhausted or it was blatantly obvious to you I wasn’t having it. I think Mummy was just too tired to fight with you.

We had a very important meeting with the Baker Centre in Bar Ilan University at 8.15am. A woman called Ayelet (aren’t they all?) will be working with us as part of their research. They do a programme very much like Floortime, but very practical so perhaps a real-life application rather than theory. We got there, slightly late after taking a wrong turn (can you believe that the massive university is not on GPS?). Ayelet filmed us for 10 minutes each playing with you, me first (despite the fact that I did win scissors paper stone with your mum). It went quite well, we did 10 pretty good minutes of Floortime and there were lots of typical things for her to see. Warmth, part-compliance, requests, erratic eye-contact etc. Mummy came in next and you did 10 minutes of filmed Floortime with her. It was the first time I’d had the chance to see you and just watch. I’d been a little sad at points over the last few days that nothing was going forward, lots was going backwards. This time I got to watch you, and as well as Mummy doing an excellent job with you (and thoroughly deserving the praise from Ayelet), you definitely have made progress. You made eye-contact that you never made once when you requested things. You said “want to give me”, and asked for a kif when you wanted something. Kisses and some, not enormous amounts, but some joint play. And definite understanding that there was a concept of joint play, I think. More of an acceptance of we both will work towards your goal of completing something rather than us getting in your way to complete it alone. It will be very interesting to see if Ayelet agrees. She was very complimentary about us, and asked if I had been on a course. She said it was like textbook Greenspan.

The cost is 150NIS an hour, and for the next two weeks you won’t be coming, the sessions are for us, and you are the tool. We’ll go over the findings Ayelet and her colleagues make this week and get some advice about how to get you to the next level, as she says. We had to sign a release to say they can show the filming to other professionals, use it in conferences etc. That is why it is so cheap. I was quite positive when I left, as was Mummy. I don’t think the sessions last forever (otherwise we’d never get a place) but they will no doubt really help us.

I rang Mifne to see if we could get next week’s meeting earlier so we only had to go to Tel Aviv without you in the morning, but no chance, Hanna Alonim herself is coming from Rosh Pina and she will be meeting us. I’ve been quite positive about Mifne, I think that it is a way of us doing things the way I would like. If we get 5 hours of therapy a week organised till September, I’d prefer it to be 10hrs for the first half and then none for the second half, I’d have lots of tools and could implement the stuff I’d learned, if that makes sense. I think intensive programs can form habits too. They give big boosts to your progress. And if there is 8 or 10 hours a day for 21 days, that totals 200 hours of therapy. Which would normally cost 40,000NIS. So it costs about that maybe, and you get lots of extras…I’m positive. Mummy read on the forum that some people thought it was a miracle, others didn’t think it was exactly a miracle, but it was good. I suspect some people actually went there and hoped for a miracle, got improvements and were disappointed. She was very impressed that we are going to get an hour with Hanna Alonim though to discuss Ben. There is the rumour going around that not everyone can get on the program, and that is why they have such a high success rate. They are private so they don’t have the obligation of the health service. So my logic is that if they want you, they think they can help you – there are only a couple of families there at one time. So if they want you, you should go. They obviously feel there is something that they see in you that they feel can be taken substantially further, and for the price of 200 hours of therapy which we will be getting you anyway, I think it can only be good.

After we dropped Mummy off at work (another success, it used to be hard, now you wound your window down, kissed Mummy and said “Mummy to work”) we went and met Nanny in town. We drove to the garden centre and perhaps shouldn’t have. You were bordering on hungry, and Shafiq wasn’t there. We waited, and typically, though first, my Englishness allowed 2 people to push in front. You were surprisingly calm though. You came to see me, said “go back home” and spent most of your time with Nanny. I’m really pleased that you are so happy to be around her. I read things that say that high functioning austistic kids can have close relationships with their parents, but don’t let other people in. Nanny, you see infrequently, and it is the same as when you leave off. You definitely know she is your Nanny. I’m not sure you know she is my mum, but she is your nanny.

We eventually got home, you were hungry, we had plants, though. We got in the lift, you pressed Bet, I pressed 4 and then you press 1, 2 and 3 but calmly got out on 4. You had breakfast and scoffed it down. You did ask for pitta-cheese but happily accepted the cornflakes. We did a bit of Floortime, some bouncing. I tried to get your pear and banana shake inside you but you weren’t having it. You smelt it and pushed it away so I tried just straight banana. No chance. So I had a think about it, and I really don’t know the role of salicylates if you are intolerant. Are they making you belly sore, brain foggy, increasing your candida, everything. Is a bit ok? One date, not ten? There are low, moderate, high, very high columns. Some fruits appear on the low in some lists, moderate in others. I’m too confused.

We went to Caesaria with Nanny for some tourist stuff. When we left I asked you to turn the light on, the one behind you. You turned round and did it. You are definitely following instructions more. You slept from the car till the Hippodrome, and then after a little shiver (there was a storm brewing), and a little bit of Eggy Bread I cleverly packed, you headed off like a madman counting the pillars, running around, trying to get into the baths that haven’t been used for 2000 years. You were very good though, and I tried to get you into positions that you need help to climb etc. You were really very good. You asked me almost every time. I think it was also a really big thing that you headed off with Nanny for a bit. Not because you are ok with Nanny, but because I was there, and you came running to me, but we ok when you weren’t with me. The more people with whom you can be like you are with me, the better. I read on a forum someone’s therapist described a kid like you, who is very responsive to his parents and not to others as having ‘all the tools in the toolbox, and just needs to know he should use them more’. Quite fitting I think.

While we were waiting in the car for Mummy, you were ok. We played a game with the lights, and then you started to kiss my hand. Halfway through, your eyes changed and you bit me. They’ll be a bruise, I have a teeth ring on the top of my hand already. You then were biting your jumper, and your knee. You seemed closer to sorry than you usually are. I never shouted, and you – I think – kissed my hand better. But it was really something unusual, I’ve no idea if it will happen again. It must be four or five months since you bit me. I’m not actually sure you have a clue what biting is, and that it hurts. No idea. I was just shocked.

You went to Safta’s and on the way there you were saying “Safta, safta, safta”, and really happy to go. This is such a good sign. We told you stuff, you took it in, you did what a regular kid does and got excited about seeing someone. You ate more (I was surprised, you’d barely finished eating ‘four’ – Eggy Toast chopped into 4 bits), rice, and then more rice (Mummy is reassured that most of the world think that rice is better for you than bread!). Two poops, sticky apparently. Safta was probably ecstatic, I was concerned – two in the morning, two in the evening. Though none yesterday. Apparently you were behaving great and asked Mummy to help you when you got stuck with the computer. You only usually ask me (or only ever, I think) so again, a step forward. Usually it is the computer, so we’ll teach you to ask for help with other things too.

I got an email from Roni about what fruits were ok for the low salicylate diet – she said peaches. I don’t know. I’m just waiting for mango to come into season. She also said we should drop the Nu Thera because of the sleep pattern being disturbed but today was ok. I’ll have a look at it in the morning.

I’ve upped the Epsom Bath salts to 1 cup (almost now). I need to find a better source – it will be very expensive otherwise. If we go to 2 cups a day, we’ll need something like 15kgs a month and that is around 450NIS from Morris. We need to buy them in 50kg bags I think. The numbers in the bath mean you stay in for very long though. A big success. They are not so cheap and it is important to get that stuff through your skin. Sometimes you are too tired you want to get out after 5 mins. I prefer you to stay for 20. You were zonked out at 10pm when I lifted you out. I did notice the red rings round your eyes though. You were asleep in 5 minutes.

Little Steps: Sought me out to play all sorts of blinking and gestures game. I blink you blink. Several incidents of joint association, pointing to something and looking at me. You got a birthday present from Safta, you unwrapped it and sang 'happy birthday' in Hebrew. Clearly you know what is going on there.
Poop: Small poop, formed!!! (1pm), bigger poop, 2.15pm, soft. Two more in close succession around 8pm and 8.30pm, soft/sticky
Sleep: Woke at 11pm in tears, and went to sleep after many efforts around 4.30am. Woke again at 7am. Nap between 3pm and 4.15pm. In bed at 10.15pm and asleep in 5 minutes

Today's Food
Breakfast: Cornflakes and Rice Milk (12noon), Banana & Pear` Smoothie (7.15am, barely touched) with 1/4 tsp Calcium, 550mg Buffered Vitamin C and 1/2 capsule Nu Thera
Snack: Banana (7.45am) Golden Delicious Apple (11am)
Lunch: Bite of a peeled pear (the rest left) (2.30pm), 3.25 slices of GFCF Eggy bread with over 1.5 eggs (4.30-5.30pm), Nestle Lemon Ice Lolly
Snack: Good For Me! Chocolate Cake (not touched - 12.30pm), Two Good For Me! Vanilla Cookies (2pm), Banana Juice (refused), Orange Juice with 250mg Buffered Vitamin C and 1/2 capsule Nu Thera (2pm)
Dinner: Two bowls of rice (double helping), Prigat Banana and Pear Juice (7.30-8pm)