Okay, so Nicholas gets a birthday present from his aunt and uncle.  The present is some kind of kit that allows you to hatch out artemis eggs in a little plastic pool. As Nicholas won this week's Top Scientist award at school, it is no surprise that Nick loves the kit.  We followed the directions very carefully, adding spring water to the pool, putting the packet of eggs into it and then following that with a tiny pinch of salt. According to the directions, we have only to await the hatching of the artemis.

One problem: the artemis don't hatch. And while this in itself is no great loss -- if you google image artemis you will discover they look a lot like headlice but live, thank God,  in water -- I feel a kind of responsibility to these water lice creatures. I cannot help but feel I've failed them. If you look at them under a microscope or even a magnifying glass they look much like an animal. They have eyes (compound, in fact!), two antennae, little feet like things that are called thoracopods and something called a telson that may be unique to ugly lice-like mini-monsters who disappoint everybody by remaining dormant in their egg states despite every effort.

Anyway, I have no idea why I write this, except that I recently spent some time with a friend of mine discussing whether or not worms can feel pain. Nicholas has taken an interest in fishing and, while I do eat fish and so understand just how much of a hypocrite I am, I cannot bring myself to actually hook, spear, bludgeon or otherwise kill a fish.  Plus, the worm was bothering me. Does it feel pain? Does it realize it is being impaled? If so, what does that mean to a worm? I mean, do they mind?

I'm guessing yes, although to be honest it remains unclear.  Worms are strange, unique, unlucky little animals. Necessary, yet hated, used mostly as bait or eaten by birds. They do, however, have five hearts. But artemis, these things that are now sitting in a plastic pool of bottled water in my kitchen, they are just frankly useless. Plus, I've discovered that if they had hatched (and so far no sign) they'd grow up and then the big ones would eat the little ones. How traumatizing: cannabils in my kitchen.

I am wondering how long I have to keep them before pouring them outside? What would be a respectable amount of time? Two days? Five?  I have an awful feeling that one day I'll find the cat drinking out of the plastic pool and she'll be swallowing artemis eggs, which one must remember are actually lice. Parasites? Could the cat die? If so, do I want the artemis in the first place?

Science kits turn out to be very dangerous. I'll have to ask Nicholas what to do.

This week I’ve been fairly preoccupied with finding a secondary school for Nicholas. He’s only in Year 5 (that’s like 5th grade) but here in the Uk you have to select a secondary school from Year 7 forward, and you have to do it well ahead of time if you have a child with special needs.

The whole idea of finding a secondary school for Nicholas feels somewhat absurd to me, and I go along to the schools with a mixture of dread and the kind of guilt you feel kenneling your dog. When I ask Nicholas how he feels about secondary school, he gives a very appropriate and honest answer. "I don't like change," he says. Because Nicholas is a "statemented" child -- that is, he has a legal document that accompanies him telling whatever school he goes to that they pretty much have to help him or will find themselves in a whole world of trouble -- we have to choose the school earlier than the other children. This is not really meant to punish us. It’s meant to make it easier for us to get the school that we want for him.

One of the nice things about living in the UK if you happen to have a child with special needs (and there are very few nice things so you need to celebrate those few) is that you get priority when it comes to school placements. This is not to say that all parents get what they want, but in the county where I live it isn’t too bad. There is this one problem, however, which is that any school that you put your child in will likely have 1000+ children in the school. In fact, 1000 is considered “small”. 1500 is quite normal. Some have up to 1800. I cannot see how a school of 1000+ (and again, it is likely to be a greater number) can benefit my child. The entire point of the intervention we are now trying out for Nicholas is to help him to learn how to establish meaningful relationships with others. In a big school like that, a school in which it is quite possible to get lost in the chaos of an ordinary day, I suspect the only meaningful relationships he will likely develop will be with the teaching assistants.

And then there is the question of how they manage his education within the school. I am not doubting their intentions (people working with special needs kids tend to be a pretty nice bunch) but if their goals are to ensure he can learn information, we are just not on the same page. It isn’t that information is bad. In fact, information is good. But if he sits in the classroom absorbing the information given, then survives the chaos of transitioning to the next lesson only to find that he has to sit and absorb yet more information, I cannot see his autism being addressed in the slightest.

But therein lies the difference between me and many educators now in the mainstream who are taking children with ASD under their wing. I want the autism, itself, addressed while they are going to deliver to the child the information within the curriculum such that they can be a “success”, that is, do well on tests. I spent some time trying to explain this to a woman who is with our Local Education Authority. She’s a very nice, bright woman who is ambitious for our children. I explained that Nicholas needs to learn to “borrow the perspectives” (one of Dr. Steven Gutstein’s phrases) of other people or else he’s going to find life very difficult, however good or bad his grades are. She agreed, but it wasn’t until I explained how this might become a crucial issue within the classroom that she really “got it”.

I explained that you could have a teacher in the classroom trying to teach this vast, diverse group and struggling a little with one of the students who is really playing her up. The student (let’s call him John) is mocking the teacher, drawing attention to himself, tipping back on his chair, being slightly obscene, etc. So the teacher (God help her) is annoyed. She is stressed. She turns to John and lays into him, at which point the boy stops being quite as difficult (for the moment). The teacher, who is only human, is still riled, but has maintained her composure.

And then, at that exact time, my son pipes up with some sort of odd remark, inappropriate question, or just the general confusion of not understanding what he’s supposed to be doing right now. So the teacher (by now thinking of early retirement) turns to Nicholas. She has a hard, angry expression on her face – not because she is angry at Nicholas but because she is generally distraught. Now, if Nick were not Nick, he’d know that the teacher’s mood had nothing to do with him, but due to the behaviour of John (who is still very much on the teacher's mind). But Nick will not know that. He’ll think, That teacher is angry. I must have done something wrong. He will go silent. He will withdraw. The teacher will then say, “What did you want, Nicholas?” He’ll start playing a video in his head to block her out, and suddenly we have a possible situation developing. At best, Nick will be a bit put off by that teacher. At worst, he’ll see school as another place he feels uncomfortable.

Why did this happen? Not because there is anything wrong with the teacher and not even because John is such a fantastically obnoxious teenager (who just to agitate us will probably grow up be really successful, elected to office, and wage illegal wars across many nations). It happened because Nicholas couldn’t borrow the perspective of the teacher. It isn’t because he couldn’t read emotions. He read the emotion all right. But he didn’t get the big picture of how emotions work, of why the teacher might be feeling like she is. That’s the kind of thing we work on with Nicholas. It is very hard to set up scenarios in which we can practice. It is even harder to get him to work with us.

You might be wondering exactly how we get a 10 year old with many interests (none of them people-oriented) to participate willingly in his therapy. That’s simple. We just pay him. It is not exactly how it is meant to be done, but I’m living at the edge over here. Today he bought a Dr. Who magazine and a tiny remote control car with money he earned by doing therapy. I just wish someone would pay me.

Thursday, June 14^th

I knew I was onto a winner today when Nicholas bounced downstairs asking for ways to make money so he could buy an MP3 player. Nothing like an obsession to concentrate the mind.  I’ve tried using money before to motivate Nick into participating more readily in school, homework, chores (secretly formulated into therapy) and even to play games with me. It hasn’t worked before today, when the money was clearly what he needed to get that MP3 player.

We had a great time doing the dishwasher. It was an exercise in Relationship Development Intervention, at least the way we went about it. He had to put the dishes into my hand, which would have been easy enough if I kept my hand in relatively the same place each time. But I didn’t . I moved it above his head, to the left, to the right, down by my knees, and sometimes didn’t put my arm out at all.

Rather than being annoyed (his usual response when I try to do games in which he has to track my body and coordinate his efforts to match mine) he found it funny. He smiled. I thought, this is what therapy ought to be. And it only cost me 30 pence.

We did the same sort of thing with the vacuum cleaner. He was in charge of the machine. I directed him through various inferences. Some were with my eyes, nodding to where he ought to sweep next. Some were with my actions (holding up a chair so he could sweep under).  He got a bit tired of this after only one room (who can blame him?) but he was good at it and he did actually follow my gestures very well.  That only cost me 50 p.  Perhaps one day we’ll clean the whole house therapeutically.

I really like to do speech and language stuff in a “natural setting”. So, for example, I held up an empty toilet roll and said, “What do you think I’m trying to tell you?”  He said, “you want me to give that to the gerbils?”. I said, yes, but also something else. He said, “We’re out of loo paper downstairs and you want me to go get some more?”.  Exactly. That was actually really clever, I thought.

There are ways of doing less functional S&L work, and it is still helpful, I imagine. There’s a lot of well thought out worksheets available on www.quia.com, for example.  If you go to www.quia.com/pages/havefun.html you’ll find the work of a very good SLP who has decided to generously allow us to all copy her games. Have a look there.

Meanwhile, I carry on making statements and hoping he converses back to me. We had a very good conversation about Dr. Who today, but that’s easy as he loves Dr. Who. In fact, on the Dr. Who website there is a great Soduko game and he, for the first time ever, decided to learn how to do those puzzles. Not much use for ASD intervention, but some very good analytic skills are involved.

We’re going to a robotwars party on Saturday and a competition on Sunday.  Not my favourite activity but Nick will love it.

The Therapy Diary Begins

Wednesday, 13^th of June 2007

Today is Imogen’s birthday  (Imogen is Nick’s now 13 year old sister).  At first Nick is pretty enthusiastic about this morning’s presents and cards.  We wake him up around 7:15 and from his bed he wishes Imogen a happy birthday, a small smile on his face.

Downstairs, he watches with interest as Imo goes through some cards and presents.  Everything is fine until she reaches the MP|3 player. This is something she has wanted for ages, and though it is not a fancy ipod, it holds enough songs that she is delighted, more than delighted. She is thrilled.

Nicholas, by contrast, is devastated. He wants an MP3 player, too. I think it is great that at age 10 he wants an MP3 player – what an age appropriate desire! However, he begins to cry silently and become angry. He says, “I’m jealous!”. He goes on, “I want one. It’s not fair!”

Although this is painful, it is actually not so bad a thing. He is sharing emotions. He is using language despite being visibly upset. Alastair takes him aside and talks gently to him. We begin to think of solutions to the problem. My solution is that he can have an MP3 player for his birthday in September. My solution is apparently MOST unsatisfactory. He is even more angry now. He says we have to go to the superstore and buy an MP3 player now. I say, “That’s a problem. First, we have school. Also, it isn’t your birthday yet. This week you’ve had a rather big present that nobody else got. Do you remember? A robotwars arena.”

No dice. He’s still upset. One solution would be if he bought his own MP3 player. He has a pencil case full of money he’s earned or collected when it is casually left on tabletops or on the counter above the washing machine. I tell him he can save up for an MP3 player if he likes. He gets his money out and we count it. He has £23.00. It is enough for a cheap MP3 player and so I agree with him that we can buy one. “That’s enough money,” he says. “There was one for £4.99!”

So, yes, he has the cash, but is that the point? I think I've lost track of the point. The whole event has me wrung out, but at least he did imagine a solution to a problem. It would have been nice if he didn’t get so upset, but hey ho.

On the way to school I try making statements so the car journey isn’t too dire. When he’s been upset he tends to be quiet afterwards, remote, his face either slightly unhappy or without any affect at all.

“I wonder if it will rain today,” I say (unlikely as it is bright sunshine in a cloudless sky. I hope he will tell me as much, but he doesn’t).

“You know what? I can’t find  your spelling words for this week.” (this is true, actually, and I’m hoping he’ll tell me where he wrote them down, but he doesn’t)

He says, “I want to play my Gameboy DS.”

“It would be great if we we could chat together first,” I reply.

“We can,” he says, turning on his DS.

If  I were more ambitious I’d make a deal with him. Something like “You can have your DS after we get halfway.” “Or, first you talk with me a little while and then you can play on your own and I won’t bug you.”  But it has already been a difficult past hour. I think I’m only up for a certain amount of negativity this morning and have already hit my limit.

The game is Animal Crossing. It is actually quite a social game for an electronic game.  You have to go around having interactions with various animals that come into your “neighbourhood”. 

I’m still determined to comment to him without asking him a direct question and to try go get some social engagement here. A direct question is easy for him. He’s been trained – and trained himself – to ask and give information. But what I want is for him to imagine what information I need or desire. I want him to work a little harder than just saying “yes” or “no” or managing in the shortest possible way at all to process an answer that will not invite further conversation.  Really, I want him to include me in his activity, but perhaps that is asking too much right now.  It has been a hard morning.

“I can hear one of the animals talking !” I tell him (I mean, of course, one of the animals on the DS game)

“Yeah.”

“But I don’t know which one.”

“It’s Pom Pom”.

“Pom Pom.  I used to know what animal he was.”

“A duck.”

Nothing is said for awhile, then Nick says,“It is raining on Animal Crossing.”

Well, at least one unsolicited bit of information.  But his overall mood is low. His engagement with me is low. Walking the wooded path into the school I told him what the word “canopy” means. Above us is a canopy of trees. The jungle is dark like this, too, even though it is so hot, because it has a canopy of trees with enormous leaves that block out the sun.”

“Why is the jungle hot?” he asks.

“That’s just the climate. The rain comes down and hits the jungle canopy making a great noise. Then it rises up in steam from the ground. It’s quite amazing.”

“My foot hurts.”

We are late because I spend ages trying to address the hurt foot, which does not look hurt when I examine it. His socks are fine. His shoes don’t seem to rub.

“My hand hurts.”

Probably repetitive stress injury from too many bloody gameboy games, but nevermind.  He didn’t look very happy when I said goodbye. He didn’t orient his body toward mine, or look at me. Just waved his hand up and walked away.

Here is my plan for the afternoon:

First, just to spend some time with him, not expecting anything. Drink a cup of tea next to him as he plays his robotwars game he loves so much (this is not the electronic version, but an arena with robots in it who fight and throw each other out of the arena. It is based on a tv show we used to watch as a family.).  I will not *make* him do anything, but I’ll just check and see whether if I sit there long enough, interested, perhaps making a few comments but only if they have with them no expectations.  If  he will include me in the game out his own volition, I’ll take that. But if he won’t, it is not a failure. I am there to drink a cup of tea near him. I am not there to do anything else.

One important part of therapy, I think, is not always making a big deal out of the moment. I don’t think any intervention talks about this, but there is a horse training “intervention” called Parelli Natural Horsemanship which teaches a whole system for training horses (great system, it works. My horses are Parelli trained) and part of what you do with the horse is hang out with it. Hang out and let the horse make the first more toward you instead of  you always making the first move to it. The idea, I suppose, is that if you are always trying to “do” something, your body language and intent become obvious and the horse associates you with a certain amount of pressure.

Pressure is not bad. In fact, pressure can be very good (It takes a certain amount of  pressure to do just about anything with anyone, and in fact normal conversation holds its own small weight of pressure even among typical people).  But sometimes, it is nice to not have the pressure. Just my being there is pressure enough. I don’t want to be someone who always has to “do” something with or to Nick, to try to edge him this way or that. Of course, I have to do this. It’s part of what has made it possible for him to progress thus far. But not all the time. When I sit with him and do “nothing”, I am actually training myself, not him. I am teaching myself to wait.

Later, there will be direct stuff:

10 minutes OT (Occupational Therapy) exercises

Some tennis practice

I’ll get him to look at the speech and language game I have on www.quia.com

I’ll find something for us to read together

I’ll see if he will go and catch some bugs with me to look at under a magnifying glass.  This is something he became interested in after seeing the character who play him (I know, a very odd concept) in Animal Crossing.

We’ll practice the game in which he has to watch my body language to see which plants to water, where the candy is hidden, where to find a hidden toy, a special clue to where somethign else might be, etc.

I’ll see if we can practice his songs for music class together (if I can figure out the tunes as he cannot remember them!)

We’ll make more of the Dalek stickers he’s so keen on. I'll explain more about this if anyone likes -- essentially, he makes stickers and puts them all over Britain, or further afield when we travel If you see a Dalek sticker on a post box or lamp post, that would be from Nicholas. Of course, making stickers itself is not therapy. I might be able to transform it into therapy, however, if I have him direct me (he has to use very precise language to do so and to correct me when our communication breaks down) or if I comment back and forth with him in abn open-ended conversational mode. To do so will take some skill on my part, and an enormous effort on Nick's part.

Tonight is Imogen’s birthday dinner. She has a big party with her friends coming up (a laser gun party combat-style. I didn’t choose this activity, I promise, but I couldn't talk her out of it)  Tonight, however, we are having crispy duck and, for dessert, we’ll have cake and meringues filled with fruit and cream. These are Imogen's favourites.  (I personally can't quite bring myself to eat anything that quacks but will have a nice roll of plum sauce and onions)

There will be other adjustments.  Nick’s meringue will be filled with a cream substitute made from soy, but the fruit will be real enough and the meringue is only egg whites and sugar. He only recently started to eat fruit, and will only do so if it is under a blanket of custard or ice cream.  Hard to achieve this with a mostly gluten and milk-free diet but it can be done. He manages goat’s milk and once in a while I can find goat’s cream, but not often.

Nothing is simple in my household. Am I making it all more complicated than it needs to me? And why is it that when I get into a room full of people holding clipboards, all of them waiting their turn to talk about the inadequacies and complex needs of my son, I start to get really angry even before they've spoken?  And why is it that there are so few people (almost none) who can deliver real-time therapy to my son?  I should be glad, at least, that I can do so. It would be nice, however, if I were better at it!

A Therapy Diary

 I am often asked how my own son, Nick, is doing. I often wonder that myself, in fact, and have begun to keep a diary of what we try, how responds, what is going on in his life generally.  I wondered if it would be helpful to parents if I blogged the diary. I cannot promise it will always be exciting, or funny, or particularly well written (I’m writing a new novel at the moment and so all my really good prose goes into that anyway). I cannot promise I will offer any great insights, either. But what I can do is open up my life to those who may want to take a closer look.  After all, Nick presented very definitely with full blown autism at the age of 2, with a diagnosis at aged 3. He had no language, no play skills, and though he always seemed attached to me – me in particular – he was otherwise aloof to people. Oh, and he stimmed, had obsessions, seemed perpetually in ya-ya land.  Just finding him in his own house took a while as he didn’t respond to my calling.  So, he was not an Asperger child, nor a particularly “high functioning” child. He was in a world of trouble.

We pretty much did what was written in Daniel Isn’t Talking, a structured, playful skill-based program that endeavoured to help move Nick up the developmental ladder.  It was behavioural in approach, but no mass trialling.. Well, we did some mass trials early on but I later vetoed them.  We did “mixed drills”, always made sure he was willingly and happily engaged, and we didn’t take much data. It was about as play-based as ABA can get.

These days we are focussing on a different approach. It isn’t that he no longer has any structured teaching – we working on him learning to tie laces and we do it through structured teaching, for example – but the backbone of our approach can be described best as focussing on his social and emotional abilities.

This is not to say that he has perfect language or academic skills, that he presents pretty “typically” but just needs some fine-tuning – no way. But we’ve discovered what is holding him back at this point is his own motivation to be part of a social scene of any sort. He has to be HIGHLY motivated to engage in a group. So, he’s pretty chatty, bright and fun at Robotwars events, for example.  But anything else, from regular school to a drama club to going to a friend’s house or getting through a birthday party sends him inside himself.  And he is suffering from not being able to get his point across, whatever language he has, simply because he doesn’t imagine the point of view of the listener. Well, I could go on, but I’ll stop there. It will become abundantly clear exactly where Nick is in any case, just by reading what I blog in the weeks to come.

There are two places to go if you want to learn more about the therapy we are doing. One is www.rdiconnect.com where you can begin to learn a little about Relationship Development Intervention.  The other is www.barryprizant.com  where they advocate what is called the SCERTS model.  SCERTS stands for “Social Communication Emotional Regulation and Transactional Support”, not that this will help you any.  But you can download two excellent articles right off Barry’s homepage that will explain exactly what it is.  RDI and SCERTS do not do exactly the same thing, these two organizations seem to be working off the same kind of research. Take a look if you like, and you’ll be hearing how Nick and I are getting on with it in this blog.