Wednesday, 18 March 2009

Nu Thera goes in

You woke up around 6.15 in strange form. It was odd, because usually you would have Yael so we it is the day I would expect you to lie on the floor unable to speak let alone ask what you want. You were pretty much like that. Numbers were the most important thing, and although you sort of acknowledge me and your mum, you blanked Nanny pretty much. She was quite patient though, even if I could see it was a little distressing to her. Fortunately after the episode the night before where you complained about your stomach, Nanny could see that the whole thing is linked.

We had no communications therapy today, Yael rang in sick I think, so Mummy got a call yesterday. It is blatantly apparent that a kid with ASD and a communications disorder probably needs more than 30 minutes every week, and as it seems to be, not every week. And then when you are there you don't participate. We can't fix up a double session next time with Yael, it's not private, so you go without. Mummy is going to find someone to give us extra sessions. It's important to start with a programme now. Especially as you are not going to Alutaf.

Obviously, we have a theory that the Epsom Salts has had an effect on your calmness. The morning after it entered your system you let us change your nappy without any fuss. This morning, after no bath the night before you kicked Mummy as she took your nappy off. You were aggressive and I had to come and help. I'm not sure I need any more proof. You will have a bath if I have to put you in asleep.

It has become easier to get Mummy to work at the minute, though you have started to memorise every visible door number on the route, and play the "where's 49? Here's 49!" game. So when Mummy gets out, and after you play the "Mummy gym!" "No, Mummy office!" game, you look for number 7, then 9...not really waving as much. Then up by the traffic lights when the numbers have run out you always say "oh no, Mummy gone to work". Same place every day. It's not something to particular worry about, and I am not sure what is going on, but in a way I'd prefer you to do it before the numbers run out.

After we got back, you played with Nanny a bit. I tried to explain to Nanny before a bit about what ASD is, what marks you out as different. I explained a little bit about the lack of joint play, and how you preferred to play alone or use the play-partner as a vehicle to get what you want. She brought some toys that demand two players and didn't really understand how deep the lack of understanding of joint play is. I think Nanny thinks you prefer to play alone, I used the word "prefer" above. It is more that you can't play with another person. There is a block there. So you will play inappropriately alone when it is easier to take turns. Like you would always play chess against yourself rather than with someone else. Very much like I did as a kid (though I suspect with me it wasn't that I didn't want to, I was just too good to get bored playing people who were useless!). But you and Nanny had some time together.

Clearly, with you jittery and resistant to having your nappy changed, I thought it was better to get you in the bath and not to the playground. I don't give you baths very often, I'd sort of forgotten quite what fun we had when we were in England. So I decided to make water the game, not the boats like Mummy does. And we had a blast, water on me, on the floor, everything soaked, and a 3/4 cup (rather than half) of Epsom Salts soaked in for 25 minutes. Roni told us to work our way up to 2 cups (though she did say 1 before). I need to find somewhere cheaper than 30NIS a kilo.

I started to make Almond Milk, following further advice from Roni. She said it is even better for you, and someone posted on a forum about it. I found lots of recipes online, and I followed one I soaked a cup of almonds for 6 hours, rinsed them, put them in a jug and blended them. Water went everywhere, so I'll use less water initially next time. Then I strained it in a sieve and it tasted, well, ok. It needs a little sweetening. I'll use it for your shakes or something.

Lunch was a revelation. I wasn't sure what to give you, so I put a sweetcorn fritter, rice and pasta from yesterday all on one plate. You ate the spaghetti in tomato sauce. I almost fell off my chair! You left the fritter, barely touched the rice. Another huge breakthough. Your taste buds are changing. The theory about your diet opening up is definitely showing signs of being right.

I also worked out how to give you half a capsule of Nu Thera. It was a trick opening it and an even bigger trick working out how much was half, but I sprinkled it in a glass bowl (clever suggestion from Nanny, plastic isn't smooth enough and you leave half the powder on the plastic). I put it in your smoothie. I figured it was food anyway and Roni said it should be taken with food no later than early afternoon in case you get hyperactive. The smoothie has a strong taste and because you slurp it throughout the morning it seemed ideal. I'm not sure if you can mix up all sorts in one shake or if they have to be separated, but Roni will let me know.

After lunch you were in much better form. We went to town and took Nanny to the market - you came back when we called your name and your were very good. We took the buggy and generally I was impressed. I usually have a harder time just walking through the streets of Galei Yam. After a while it was noticeable that you started to respond less to us, came back less. I really have an idea it might be a slow build up of sensory images, eventually you just go hyper. You were much calmer when we started than when we were all worn out and dying to sit down. We saw you run around a park, flitting between the slides and swings and other attractions. I really need to get some handle on the fact you have a sensory disorder.

Dr Bronshtein wanted to see us at 6.45 so we went along and talked with him for an hour. We showed him the OAT and Stool Tests results and he was very interested. We thought we would approach him in the 'we saw you, we ran some tests, can you interpret them with us' way, rather than just wade in with our minimal understanding and demand stuff. We sat with him and asked for his interpretation, he has a copy of the results, completely understands that there is a link between diet and behaviour and has a PhD in (I think it is this in English) Allergiology). He wanted to discuss things with Roni and look into the whole ASD/diet thing further. We didn't actually ask him for the fluconazole because it was pretty clear he wasn't going to prescribe it then without doing lots of researching, if he would at all. However he did say you should never have antibiotics without probiotics (which is quite radical) and make sure that we give both. He also said you haven't been to see him in ages, so maybe we should keep you out of gan!!! We also got the tests back from the Kupat Holim. Nothing too alarming according to Dr Bronshtein, they tested for gluten I think (coeliac) and it looks like he is the opposite. I don't understand them completely but Roni will. All in all, a very positive meeting. He also wanted to check out the doctors who do DAN! in Israel.

We'd been looking for adverse reactions all day to SNT. Then while we were seeing Dr Bronshtein, Nanny said you did an almighty poop up you back. Of course, with all these changes, you never know what it is for sure. I think it could be from the bath water that morning with Epsom Salts. Nanny put you in the bath and you were dressed for bed, lying on our bed playing with Nanny as we came home. Mummy put you to sleep and said you were absolutely brilliant with you Rabbit Sits on the Train book. You actually answered questions, you did the order right of the things sitting on the train, rather than the order you wanted to say them and you answered direct questions like "what is that?" with the correct word: "Sea" or whatever. Super Nu Thera? Extra Epsom Salts that day? Who knows but it was good.

You went to sleep easily around 8pm. All in all a success I think. I think mostly, bouncing back after what might have been the strawberries has helped me show Nanny that food can be bad. She's allergic to lactose, so she didn't need much convincing - but she gets pain, you get spaced out. Pain you can see, spaced outness is not so easy to identify with.

Little Steps: Responded to questions perfectly during bedtime story.

Today's Food
Breakfast: Cornflakes and Rice Milk, Banana & Date Smoothie with calcium and 1/2 Capsule of Nu Thera
Snack: Chocolate Cake, Prigat Raspberry Syrup
Lunch: Rice (barely touched), Sweetcorn Fritter (refused), Rice and Quinoa Spaghetti in tomato sauce (scoffed - I understand nothing).
Snack: Banana, 8 dried apricots
Dinner: French toast (made of two slices of GF bread, one egg and sugar and salt)

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