A wee bit of an update on my boy James for those interested. James is now 3yrs 10 months and has been doing ABA for uh six months or so. He is doing really well at the tasks he is set by his ABA teachers. He can do things like identify an object such as a car from a photo, and understand different kinds of cars, which is good as understanding categories is a big thing. He can complete a task that involves dissasembling an object then re-assembling the object in a specific order as shown by his teacher.

He has no functional language anymore but makes requests by taking our hand and leading us to things. He has started using PECS which is a system where you show a picture of something in lieue of the ability to speak. He needs to be prompted to use this though, I think half his problem with this is he's just so chilled out. He's referred to as a 'passive' subtype of Autism.
The strongest change for me since the ABA has started has been his eye contact. He now looks in my eyes extensively for long periods, more than a normal kid would in fact. The other day we were both looking in the freezer (I think he was hoping for ice-cream), I turned to him and he turned and looked at my eyes then back at the freezer. Doesn't sound like much but I believe thats the first 'joint attention' I've seen from him.

And he now actively seeks me out for a game as such. The game involves basically him hugging me extremely tightly face to face, and me tickling him, and trying to nibble his ears while he fends me off with great enthusiasm, it ends up with a lot of wrestling and him using hands, elbows, and laughing his head off. But he'll intersperse that with going off and zonign out all rainman like and lining up objects or 'playing' with something with no sign that there's an outside world, as in I can't break in - literally I can put my face in between the object and him and his focus is on the object behind my head; it doesn't waver - just like he used to be. Then later he'll come back to me grinning and jump on me for another round of tickle games. And sometimes I'll hear him in his room, he might have been in there an hour and supposed to be going to sleep and he will just be giggling and giggling loudly like something is the funniest thing in the world, and I go in there and there he is lying in his bed looking at his hand. Gawd knows whats going on in that head but at least he's happy!

I took my boy to the gym they have for the local ASD group and it was kinda good and kinda discouraging, and quite hard work. The format is they organise a sequence of things for the kids to do as a group in order, e.g. walk up a ladder, turn around and fall backward onto a landing cushion thing, wlak along a beam swing on a rope, forward rolls down a board etc. So it teaches them to listen and follow instructions and attentiveness and physical components. The kids all there do it at a canter and can all talk, I'd be hard pressed to pick them as ASD kids except one or two. James of course can't talk or follow instructions..the discouraging thing I feel is he's in a group of Autistic kids and within that he's the 'worst', which is how it was in the course we went on.
But I've got to remember that the other kids are older and have done some years of ABA, as one Mum told me her son couldn't talk either at James age.

At home I saw him look at and grin at two other kids (Andrew and Chris) that were trying to enagage with him and bouncing a ball off his head on the trampoline. Strange as it may sound I have never seen him even give the slightest awareness that another child is anything more significant then a fence post that needs to be walked around before, let alone at them.

Silly song

I was pushing James on the swing today at the park, and made up a song:

"James, James, James
James, James, James
He likes to eat Marmite - and peanut butter too.
He likes to eat lollies..and chippies as well, he likes to eat lots of food, and then he makes a smell"

Etc

And I sang about all the different foods he likes to eat, and the different things he had done that day and people he'd seen (been to Kindy, had homework with Vanessa and Lisette).

He was grinning broadly, and really seemed to be listening whereas if I talk to him he doesn't appear to pay attention.
:-)

Different boy?

James has been sick this week with a virus with an on and off temperature so has been tired and sleeping lots including during the day. On Sat he had had a sleep during the day so we decided to go into town about 7:30pm for an adventure on Oriental parade seeing as the weather was so nice. This is something we've never done before, taken James out at night, broken the routine. We had a ball, ran up and down the parade, ran up and down the beach, went in the water a bit (well James did) went on the playground at Freyberg and down the big bumpy slide. Then on the way home we got burgers from burger fuel, I stayed in the car with James, but James was keen as to get out so I took him into the shop where Michelle was and he ran about a bit but happily sat on the stool watching TV (unusual for him).

Now today I took James swimming in the morning and we had a good time as usual.
And this avo it seems like I have a somewhat different boy (Michelle noticed changes in his demeanour since Friday); progressively over the last year James has got more and more passive and seemingly disinterested in the world, often showing little interest in things children are normally interested in and staring off into the distance. Today he has done the following uncharacteristic things:

- On the way back from the pool he was opening the car door, and then was winding the window down.
- Been making lots of sounds (kind of like groaning but not unhappy if that makes sense..).
- Watched a bit of TV (never normally looks at it).
- When we went to the cafe was lying down on the footpath and same on the way back and didn't want to be carried either.
- Made a mess in the office, investigating things and pulling things out.
- Come running over and flopped on me and we've had tickles where I have made him laugh instead of him just pulling away.
- Been unco-operative during his ABA and pretty much refused to do any.
- Been pinching and running about and the house and almost..naughty?
- Been smiling lots.
- Ate a rissole for tea straight off and his brocolli.
- I offered him carrots, he looked at me and tried some, and then ate some!
- He put a carrot in my mouth (last time he would have put food in my mouth would be 18 months ago).

Great :)

M was away for the weekend. I did two sessions with James on Sat but he was a horror, and refused any lollies in the end, even M&Ms and was stimming big time and even jumped up and wrought arm-swinging havoc upon his stacked clothes!

So I didn't do any on Sunday as he was even more tired. That aside he kept coming and getting my hand all weekend and taking me off for food or to get something or even just to play- next to him. He can't play with me as..well he just can't do that yet. But the taking of the hand was great. We did lots went to a few parks, went and did his biking, went to the pool.
Michelle did some sessions Monday and I did a little bit while he was in the bath yesterday. I did quite a lot today after work.
Did a lot of thinking about the reinforcers as I think that was the problem on Sat in large, so now adding in different sorts of fun activities. And marshmallows! His current favourite.

Hello blog. Less use for you at the moment as not feeling so sad, angry, worried anymore.

M and I have started with the rethink autism website and have put some concerted effort in. Once a week one of their consultants Lin calls us and speaks with us for upwards of an hour giving us guidance and monitoring James progress.

We're getting into the swing of it and committing time every day to have a good go and it is paying off already. James has done some independent pointing, is making good eye contact when asked, and progressing towards some other things. Best of all he likes being in his room doing 'homework'! Who wouldn't with bits of Jelly snake for motivation!
Love interacting with him and his smiles :)

Really pleased. Really focusing everything we can on this little guy now, and using every bit of time with him to develop 'something' , 'anything' in some way.

Couple of encouraging things. Firstly James is still echoing new words I say to him when I show him an object and have his attention. today it was 'handle' yesterday is was 'pliers' and 'lock' (I think).

Today he was playing at Penny's with a Duplo car and a block was stuck in the back, there was not enough for him to grip onto as it was mostly recessed and he wanted to take it off so after trying to remove it and not being successful he was sticking another brick on it, so that by pulling that brick it would take both off. He was definitely doing this on purpose and I thought now that's smart thinking :-)!!!!
It didn't work due to the lame Duplo grip they have so I offered help and he actually came around the table with it to me and I did it for him (it was hard!) twice.

Also his bike riding; he is entirely self taught and has learnt to balance, steer and now brake by dragging his feet (after experimenting with sticking them out facing forward which gets a bit wild).
I did give him loads of praise the other day while he was riding his bike; almost North American styles LOL; 'Yay, go James, (clapping and patting his head as he goes past)!

Also he is much more frequently recently taking me by the hand, I have been encouraging this by being responsive and saying 'show Daddy' and then going wherever. although I have to say 'no' recently to leaving a couple of houses (Mums and Penny's) that we have been at.

So here's lazy old me up after midnight blogging, filling out SCERTS sheets and about to go back on the rethink autism site to watch videos, take notes and print stuff out. Of course he's worth it!

We went on the course today. The start was awful, they showed a video clip of each child and me and Michelle watched in what I can only describe (for me) as horror as the other children played with trains and interacted with their parents, wrote letters, drew pictures and answered questions. I looked at Michelle and could see tears welling in her eyes as she watched with a fixed expression.

I had to explain to the group a little about James before his clip which was the last one and I felt all choked up. Then came James' clip, and the course supervisor introduced him by saying and here's James playing with Mr Potato Head in a way that made him sound like a baby, and then there was the clip of him sitting there in his Little School top, head down making hissing noises while he tried to put bits on Mr Potato head. In the video, while he was doing this Michelle was calling his name, but he was totally unresponsive.
It really felt like another further and final kick in the guts, to finally attend a course for Autistic kids and expect to meet other parents with children like yours but then find there's another level you can drop. :-(
I bet the other parents were thinking 'Jeeze at least my kids not like that'.
I didn't hear much of the next wee while as it slid by me a bit while I was thinking dark thoughts.

Later whenever the presenters would talk about how 'some of our children might never talk' they would look at us (or I felt so anyway).

On reflection the video clip was one of James at his Autistic best, and as it transpired while these other kids may have all these things they can do (uh like talk!) they in their own ways are just as disabled. It's the social reciprocity that is the underlying problem with all these kids. The child of the woman next to us builds things with wood and nails and can talk fluently, but has to stop ritualistically and ask questions about water all the time whenever they walk down the street past manholes and so-on, and never has cuddles with her and doesn't look her in the eye. This child also broke his arm at school and never said anything, the mother only noticed that something was wrong because his hand was hanging funny.

Tonight we went to Penny's for tea, while there James banged his ear and got very upset, Michelle was holding his arms and he was almost silently mouthing in anguish, I held out my arms and he fell into them and sobbed quietly but with very deep shuddering and clung onto me tightly. I talked to him and stroked his back and head. It is a strange mixed feeling, I felt close to tears myself, but I feel so glad when he clings onto us like this and feel so close to him when he wants to be comforted by his Daddy. I lifted him up after a little and took him close to Michelle and he leaned out to go to and cuddle her. It's fantastic that he loves us like this.

Tonight Hannah rarked James up by leaping out at him and shrieking as he down the hall and giving him a bit of a fright. He loved it, before long he was running up and down the hall, grinning like a maniac and giggling and laughing, Hannah leaping out and yelling at the top of her lungs. So good to see him come alive vs the distant bored looking boy he had been all since I came home.
I joined in and chased him, he loved that too.
He does like running James, but he doesn't think to do it himself.

We then read books in his room, then more in Hannahs (put him in bed with her for a bit for snuggles) then a bit more chasing as he ran off, then back to his bedroom for a round of old Mcdonald. He even looked at the book a bit as I pointed the animals out. And now they are in bed. He may even go to sleep eventually. Maybe!

Likes:
Things with holes, snaps buckles, counters, buckles, textures, shapes.
Slots, apertures, hinges, wheels, buttons, switches; observing cause and effect.
Stacking, connecting, clicking, joining, breaking.
Getting inside boxes, and under sheets. Jumping.
Running, riding his bike. Walking down the mountain.
Swimming and spa pool and bath.
Hopping in and out of the car.
Swinging.
Music.
New toys he hasn't seen before.
Photos of friends and family
Building Blocks - but only a bit now.
things that go up and down.
Trampoline.
Climbing.
Play fighting esp on the bed (pillow fight).
Play dough.
Sand and gravel.
Goes through cycles, i.e. does cars to death then gets bored and won't show interest for a year or so.
Cuddles.

Currently not interested in:
TV, Puzzles, books, toy cars, trains, balls, drawing.

Does not use imagination. But likes it when others do e.g. the cake game, pretending with dolls. Puppets - he takes them literally a bit (e.g. the Connex monster).
When using play dough or blocks doesn't really want to make structures or anything but just likes to join blocks and squish play dough. Likes to sort counters by colour, in lines etc.

Today we had Muno from Autism NZ come around and film James doing some stuff with Mr tato. He got bored pretty fast and stopped but we got some footage. She talked about the course next week, she will be the facilitator.
I dropped the Autism books we borrowed from IHC back and got to see their library. Very impressive, loads of books so I borrowed two more, epic tomes of a technical nature. The sort you'd never buy but are good to read some of. I plan to read pretty much every book they have there, it is a fantastic resource.

when I got home James seemed lethargic and bored. I felt possessed of some sort of energy and felt like rarking things up so we three (me, James, Hannah) did a lot of mucking around with the Swiss ball; bouncing, rolling, squashing him, chucking the ball, dropping it on him, then after tea got into Hannah s old Fantacolour mosaic board. It's a plastic board and you stick different coloured mushroom shaped little domes with sticks into it to make patterns and shapes. I just got down with James and did the 'Floortime' thing and it worked really well, I was very very pleased. I got James doing lines, I just worked in with him and beside him and did some lines and talked lots about the colours. Interestlingly of the four colours, red, blue, yellow and green he was only interested in green and in his own words 'purple' (blue).
I encouraged him to make lines by showing him some line making and also joining some of his up. Every time he did one in sequence I would say 'good boy' very enthusiastically and rub his back. He did seem to respond and became a bit more interested in doing lines instead of just random stuff. I also showed him turning it over and popping them out from the back while saying 'pop'.
Sometimes he would jump up and jump around a bit. I must have spent 30-40 minutes on the floor with him.
Anyway it felt really good to guide him to do something and to see him be pleased, and also to note that he seems to be encouraged by the praise. It's not immediate but it does seem to work. Like many things with James it's slow.

Some vignettes from today that describe it overall:

This morning James came into our bed, he was happy and smiling. He lay there babbling unintelligible stuff, and I ‘babbled’ back (hello James, hello, wheres your nose? etc).
After a little more of his babbling he went quite I looked over and he had a look on his face like he was about to cry. Why? no idea! So I cuddled him and he grabbed onto me.

No bread in the house so gave him two weetbix for breakfast, he was not that happy but ate about half. Then I made pancakes for the house inhabitants which included Holly, James had some but spat it all out.
Once Holly had been picked up we went to go swimming but it being Anzac day the pool was shut, went via the tip and dropped off waste oil and various broken appliances that I had put in the back of the car. To Grandmas house and James played a bit with the toy matchbox cars, well when you say ‘played’ I mean looked at and held in his hands.
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So what has James done today and what have I tried:

I have tried getting him to play with various things. He has been most content to come down into the garage and hop into our (new) car, muck around inside, get out, go up the stairs. Come back down, look at the car. Play with the Ford badge (pivots to expose the bonnet release).
I have tried really hard talking to him. Getting down low face to face, being patient. There's been basically no language today at all.

I have read books, he hardly looks, he’s barely ‘there’ at all. We have got puzzles from the toy library he is not interested. We got some giant block things you fit together and can make shapes, he’s not interested in those except marginally initially, meanwhile Hannah (and Holly) did not stopped playing with them, making ‘trains’ and dance mat, boxes to get into, fences, houses etc etc.
He’s not interested in TV.

He has been on his bike around the house, he is enjoying his bike but he never looks thrilled, it's like it's something he does to while the time.

What has interested him:
Playing in the car, pushing buttons etc.
I took him on the tramp, he does like this but only for so long. I took him to the park for a swing, he does like this quite a lot; some things never change.
I put him in the Spa, he does like this but he was only in there a wee while he got out grizzling.
He does honestly like having cuddles with me, and whenever I have sat down with him we have had a cuddle. He’s quite content to lie on me and have his head stroked for a bit.
The buckle on his car seat has always intrigued him. He still plays with and tries to open this.
The chain release thing on the safety chain on the baby swings at the playground. Can’ do it but loves it.
Wee George came around, but James didn’t even so much as look at him. George just looks at James occasionally with the puzzled look and doesn’t bother.
Also yesterday at the park a little boy from James’ little school came up and said ‘Hi James’, James didn’t even smile or acknowledge him. Yet we know James likes going to little school.

Put him to bed early, he was grizzling lots since before tea, I felt he was tired and he was asleep before 7pm, so maybe that was a lot of the problem.

Instructions for people looking after James

James has Autism. In his case it primarily means he has very limited communication or understanding of situations. He mostly uses little to no language and has not learnt to point or indicate choices. He doesn't understand facial expressions. He does seem to understand a fair bit of direct language but it is often hard to know how much as he either slow to react or doesn't react at all.

When you first meet him or see him again, it can take him five minutes to acknowledge your presence. Don't feel like he is ignoring you when you can't get even a glance even if you stand in front of him, it will happen - it just takes time, this happens every single day to his own parents.

Generally by nature James is a happy and compliant boy but sometimes he might show problems with his behaviour. This usually occurs if something unexpected happens (e.g. he thought he was going to the park but went to the supermarket) or he wants something and can't tell us. In these cases he can get upset. He's not being difficult; it's just frustration or he doesn't know what or why things are happening.
Heres some tips for dealing with him that will make things easier:

Keep communicating with James, the most effective way to do this is to get down on one knee, look him in the eye (hold his hands if he's looking away and say 'James' several times to get his attention) and use clear very simple (reduced) language. E.g.

'James want (drink/food etc)?'
'Go park?'
'Come hop in the (car/bath)'
'Hold hand'

These phrases generally need repeating several times so he gets the idea. He often won't indicate he understands but it does help prepare him for whats coming and makes it easier instead of him resisting. If he's going to be going somewhere it helps to let him know what is happening/where you are going prior several times and don't rush.
James will turn to his name being called if you are in the same room as him (and he is in the mood), hold your hand out and say 'come here James' to get him to come over.
He is good at following along when you hold his hand (offer your hand and say 'hold hands') and this is what we do to get him to go somewhere after preparing him by talking to him.

If he doesn't like something he will groan or grizzle, or may get increasingly upset. Full on screaming kicking tantrums can happen but are reserved for situations in public with unfamiliar places. In general try to treat him like a normal child; but explain what is going on using the simple communication methods mentioned. If he is doing something innaproriate (e.g. hitting) tell him 'NO James STOP'.
If he really gets upset it helps to calm him by looking in his face, stroking his back and head and talking to him gently. Follow with cuddles if he looks pretty sad. Also playing music that he likes (which is most) generally has a very fast calming effect. TV doesn't really interest him.
These tantrums can happen when he's hungry or thirsty and can't let you know, so offering food and drink can sort out the situation too.

He can pinch or be rough with adults. This is often some type of communication, we think he wants to play or is bored. If he does this, say 'Gentle' a few times (we think he knows what this means) and see if wants to play. Generally with kids he is passive and pretty much doesn't be aggressive unless they provoke him (even then is unlikley to be aggressive).

Likes:
He likes going to the park especially swings (Be careful he usually wants to be on there 1/2 an hr or more!).

He loves playing with counters, and buttons, and dirt and gravel.

Likes Cafe's because he gets 'cake'.

Dislikes:
He hates shops. We don't take him to these anymore!

Beware:
He can steathlily sneak off and has taken to climbing. He can also run extremely fast, be very careful of all these, as he will not come or answer to his name if he can't see you, or call back if you are looking for him. If he were to get lost he would be upset, wouldn't know his way back and totally unable to do anything about it. It sounds tedious but at home we always make sure we know where he is and where hazordous sitatuions might arise.
He can also be dangerous near roads and has launched himself unexpectedly towards them.

In public places always hold his hand gently but ready to be firm if nesc, he is quite good at holding hands and following, and will generally only pull away if upset. Keep communicating where you are going (point and tell).

Other children:
James likes other childrens presence but doesn't show this in normal ways or know how to play. E.g. he may go over near to other children but usually not look at them or engage with them, he simply doesn't know how. It's good to let other children know that he 'hasn't learnt yet how to play' and that they can help teach him (give them the idea they are the senior child), and that if he doesn't appear to want to play with someone it's usually becuase he doesn't know what or why they are doing it.

The key with James is to be clear with directions, consistent and persist!

Went to Sharon Parson's (Megans Mums) 60th at Megans house in Khandallah on the weekend.
There was a very cute wee blonde girl who kept chasing James around and trying to put her arms around him and try and kiss him. It was sweet, but he acted like she was nothing more than some annoying vines that needed to be pushed away.
Similarly on Friday Michelles' cousin Theresa's wee girl was trying to interact with James.
In each case you see the child looking a bit perplexed and repeatedly trying, and then standing back and just looking at James.

A little sad to think one day it might be the other way around.

Fear of an image of James in the possible future keeps me motivated, that and the thought that we might hold the key to prevent this if we keep in his face and start early.

Another day where it all seems to hard.
Another day where I didn't do what I wanted because it was easier not too.
Another day where I wonder whats the point. Where achieving anything seems futile.
Feeling despondent.
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James threw tantrums at the Hockey Stadium, he had been happy to get in the car but got more and more unhappy on the way in, I wonder if he expected to be going somewhere else.
At the hockey stadium my frustration meant I felt like boxing his ears.
I did get down at eye level and inquired gently about what was wrong. That did calm him, although he couldn't tell me what was wrong. At the BBQ afterwards he was difficult. He is starting to get more angry these days. Yesterday Michelle took him too the zoo, and he threw such a massive tanty that they had to leave after a short time there. We figure it was overload or something.

Tonight I did some of the 'floortime' technique with him for the first time. Trying to interact with toys, he won't even look, even if you get you hands in with his taking/giving things.
But I got a puzzle and after much prodding and repeating his name over and over when he didn't seem too keen to finish it, he came over and hit me. Thats never happened before. So I tried to get this to happen again and he did come over flailing.
I find this much better than no response, so something is getting through even if it's bad. I was pleased at my persistence.
Tonight I did a lot more reading of ABA on wrong planet and links, and have come to the conclusion that it works, and the opponents are Neurodiversity punks. I'm sick of those c*nts, hardly any of them seem like they have anything except social aversions.
Also mixed in with my thoughts are always those about me. I have strong suspicions James is quite lazy - like his dad! So I feel like pushing and demanding/expecting things of him will prove beneficial. Instead of saying 'Oh he's Autistic' and just letting something be.

Hello Blog, sorry I have been spending a lot of time on Wrong Planet.
Anyway James is now saying phrases using 'I' and 'It'.
'I stuck'. 'I break it'.

Usually this in response to an unexpected situation where he is suprised. Thats very encouraging, the use of language in that way. Language still comes out sporadically and rarely but it's there, it's contextual and becoming more advanced.

He really has made some progress recently. His answering to his name. His whizzing around on his little push bike. And now this use of Pronouns.

It's like he doesn't see the need or motivation to use langauge.
Certainly he will do everything he can to avoid communication to people. E.g. yesterday Vanessa was trying to get him to make choices or ask for help and he wouldn't.
He wants to do it all himself. She gave him a muesli bar and he couldn't get into it, eventually he just left it rather than take it to her.

Had a good meeting with Kaye and Caroline. We had some concern about SCERTS vagueness and have been looking at ABA. Heres what I posted on wrong planet:

"We met with the facilitators of the SCERTS programme for James. We mentioned our concerns with SCERTS (i.e. seems non specific, a bit vague, might be better things out there) and that we had considered ABA.

The way they explained the SCERTS programme to us is that it is holistic, and looks at all aspects of the child's development. It looks to understand the child's interests and responsiveness and uses this as an aide to facilitate learning. It brings in learning methods and techniques at points and times where required. E.g. they are coming to us in a few weeks to teach us on and initiate James with the techniques for using PECS. They record the child's development in all his and our goals and feed that back into the programme using a marking system to reassess where to/what to do next.

The said that in their experience ABA delivers skills that often can't be generalised by the child, or used in different contexts. They also talked about their experience where it didn't seem to even make progress, e.g. someone spending a lot of money on a child over six months for no result.
Where as they had/have seen strong progress with the SCERTS model with some of the children they had been working with.

I take all that with a grain of salt, however I do have faith in these people and our paediatrician's judgement and experience. So we are going to go with it and do the best job of working with them that we can and see what happens."

We have been reading two books from Autism NZ and both finished tonight. I asked Michelle how hers went, it followed several kids at a younger age then their status 15 or so years later.
Michelle said the outcome for most was not good, and then had a good cry. She does not want James to grow up to live in a house with several other 'mental' men and have a job pushing shopping trollies at Woolworths. We talked. I talked about James' positives. The way he is now answering to his name. How he is quite social; even though he doesn't talk he seems to want to be around people. How he sleeps well. How he likes physical affection. How he seems to get bored and likes stimulation, and how when he gets it as in let loose in the garage the babble - sounds of happiness - spill out of him. How maybe he is like I was as a youngster just maybe more so; so many things like the boredom aspect are like me.

Today I tried being forceful in my tone and insisting that he do things like lie down for me on the floor. I feel he understands my intent (I say that from several things such as the way he bursts into tears if I tell him off and smiles sometimes when I am asking him to do something which he doesn't do). Its like he understands at some level the tone. This is a very encouraging thing. So I want to continue down this path of trying to treat him more like a normal kid, i.e. persuading, admonishing when required, praise (I include rubbing his back and chest with the praise) and all that.

I told Michelle that the only people in the world that truly care about James are us - to be fair the rest do want the best for him, but within their realm - as special Ed people, or daycare workers or relatives- but he's not there's and at the end of the day they go home. The most powerful thing Michelle and I have is our love for each other and for James and so we need to be the ones to take responsibility for his development, and get in his face and work with him.
And as she said very importantly keep talking to one another all the time.

We have moved ALL the toys out of the lounge and put them in containers in James' bedroom. The idea being that he will need to interact with us more. We do get them out for him to play with but put them away when finished.

It does seem to be working as there is less to 'lose' himself in.

Another thing we have noticed is that with his toys gone he finds other things and is a lot more vocal. Its like his regular toys like his blocks become things he turns to and does even though he is bored with them it's almost involuntary play.

We also have been getting him to help put the Toys away, he does this very well.

Some progress!

We have started the SCERTs programme. It seems a bit vague to me and seems the goals we all have (i.e. me and Michelle have some goals and James has some goals) are things we have already been trying. It's not very specific, still we will go with it as best we can.

But a couple of cool things have been happening. Firstly and most importantly James has been answering to his name. When I say his name at least half the time he turns to look at me. This appears to have happened in the last few weeks. It's hard to know when it started because I have always used his name and just kept at it.

Secondly he has started using the word I and I'm in the past two days, mostly in the form of babble. Today he was babbling in the morning e.g. 'I blah blah blah' and I'm going blah blah' and on the slide at the park said 'I slide'! A few days ago I gave him an ice cream and he said 'like' as we gave it to him.
I also think I heard that word joined to the I and so he said 'I like' today about something but couldn't be sure.

Michelle I think is still coming to terms with things, but this latest progress is sooo cool, after what seems like the regression of the last 6 or so months.

Similar to a few days ago which I posted about I made James cry today. He bit my leg and I went 'Owww' then 'No James thats not OK' but not even in and angry tone let along loud and he burst into sobbing. Again I almost cried and spent the next five minutes cuddling and putting his head against his and stroking his head and back.
But as I said to Michelle it indicates he seems sensitive to our disapproval and gets emotional about it, and that I feel is a good thing!

Thoughts inspired by a little girl

I had a bit of a epiphany yesterday. I was at the smimming pool and a little girl walked out she looked unhappy and her eyes were red so I was looking at her. As she walked past and looked at me, a great big smile lit up her face and she waved at me even though we were only a metre apart. I realised she was a downs child and her eyes were red from chlorine. She was as happy as could be. She might well be the happiest person at the pool!

My son loves going to his daycare. He can't talk to the kids but his teacher there makes sure they understand he is 'still learning to talk' and include him in their activities and also help him to do tasks - as mentors to him. E.g. taking his hand and leading him to the wash basin to wash his hands before lunch. His main teacher is an old Samoan lady and I think there is more wisdom in her than any specially trained person.

I have been thinking so much about my son's loss of 'future' as I perceived it was going to be. I never dreamed of big things, just that he would talk and have friends and get a job and have a partner one day and be fulfilled. Those are the things I would want for myself. But if all these things are not achieved but he achieves fulfilment and happiness then I would be pretty happy. So maybe that would be a job pushing trollies at the shopping market (he'd have to stop staring at the leaves blowing on the trees LOL). Hell really my prime motivation in work has been to not be bored. I could get a much higher paying job if I used all my skills, I can't be arsed I don't want the stress for some money I don't actually need.

I think I am also starting to get over the difference thing (when compared with other kids) when at the park. I think the slow realisation of that was the most painful thing. But now I know I think I am beginning to become OK with it. Yes he is different but thats not a bad thing now.

In short I think I am coming to an acceptance. But it still comes and goes. I do feel that I will be able to be a more effective parent for my boy by having an acceptance of him rather than panicking that he needs to be 'fixed'. And I think this is where Dr Andrew was coming from with his less than psotive thoughts about ABA. I have read on Wrong Planet from people who have had that sort of therapy that it was painful and made them feel bad about themselves (low self esteem) and stressed. What good is knowing how to spell cat if thats the price.

James cries and makes us!

Today I had to tell James off for tearing a page in Hannahs school library book.
I took him down to the kitchen where Michelle was and said 'No! We don't tear books James' or words to that effect. Well his smile slowly faded and face started dropping then a look of suffering and anguish came over him and he opened his mouth and then tears started trickling down his face. It is just so hard to watch he doesn't try and hide his feelings he just looks at you with his big eyes like a puppy and cries in silence. Both me and Michelle immediately had tears well up and start spilling down our faces, I went and started cuddling him and stroking his head and back and saying that it was OK. I felt soo bad, again.

In one way its really very very good he understands that it is not OK, on that level he obviously deeply understands us and is emotionally affected by it. But his expression of grief is so raw that it is terrible for us and I feel such a heel! And when I say I told him off it was just quietly there was no shouting or anything.
He really is a good little boy and I very rarely have to tell him off, maybe once a fortnight.

Thoughts for the board

Instructions: Getting down face to face and telling clearly while looking in James eyes. Wait.
Question: Lean down and ask him to show you (an actual question is too hard). ‘James show daddy’. ‘You show me’. Put you hand in his very softly and let him lead you.
Pointing and naming development: Do pointing and naming. Also grab James finger and use it to point. This is where we need Hannahs help.

Other thoughts: Part of issue is we know what he wants so give it to him. How about cabbage for breakfast? Get him frustrated by giving him inappropriate things. This will force him to communicate...in some way.
Tomato sauce on toast. Raw Potatoes for breakfast.
Or for tea we give him Duplo blocks, while we eat something yummy. Then he will come to grab our tea grizzling. Then we can get him some tea.
At least that is a request. Trim milk in drink?
Dress him in a paper bag?!!

Fit and more

Well James had a febrile fit while I was home with him on Monday looking after him. I freaked and ran around with him sobbing "James, no, no, no" until I put him down and called 111 as per this post on another forum:

"Bloody hell, happened again this morning, only this time I actually saw my boy keel over unconscious with his eyes rolled back in his head and not breathing. Fuck its scary, I ran about with him in my arms like a rag doll basically gibbering and wailing until I got it together and called 111.
They sent a fire engine first as they were closest and an ambulance, even the firemen were a bit freaked I could tell to see this little guy lying there motionless and grey staring into the ether.

Anyway no harm done, and big props to our emergency services and hospital people they are frikkin awesome and very thorough!"

We spent the day in the hospital, they wanted to make sure it was nothing more serious.
In other events we got James' patient report from the CDT. What we expected but it's still hard to read the cold truth of his level of capability which is around 18 months.
We are still waiting on his Chromosome tests, both me and Michelle are very worried about the possibility of Fragile X. If he does have that there will be no hope of any level of decent intelligence which will be disappointing for two people who already feel like things are against us.
Prob be a few weeks before we find out.
What will be will be and I will always love and look after him whatever happens.

Tonight I made a big deal about the 'Baby' (James large doll) and brushed her teeth and read her a book, and put her to bed and kissed her and checked her nappies, all the things I do to James and he was highly amused! He was extremely tired, I put him down about 7:10 and he would have been asleep in 5 minutes.

Girls coming home from the sounds tonight

Took James to the Porirua pool this morning. He has been a little less animated today, no doubt due to him for gawd only knows what reason staying up till 9:30 getting up to Hijinks in his room.
Later on I took him to the Khandallah Park and we went to the cafe where he scoffed most of a piece of Banana cake in record time. We then went on the swings - a lot. Then I took him for a loop walk, he was not keen, but we did it, he certainly quite likes running downhill holding my hand.
On the way out he wanted to go into Khandallah pool, it was a lovely warm summers afternoon with no wind, so I thought why not and paid the $1 entry fee plus $2 for a large swim nappy. Got him changed with quite a bit of protest then into the paddlers area, well he wasn't too enamoured of that either. He pretty soon wanted to go into the main pool, since I didn't have my togs I wouldn't let him and a right grizzly crying episode erupted. He kept running off and going 'Help help help' and it was really hard to pick him up, finally I decided I would go in my shorts and took him and went and got changed, well he howled the house down and there were a few sour faces in the changing sheds I noticed. So we get out and so I try to take him into the pool and now he decides he doesn't want too. I think he was a bit cold, and also I think hungry. By now people were looking at us wrecking the peace so I went and put my top on to go and his to warm him up (which he appreciated), managed to have him turn turtle on one of the picnic table seats and hurt himself, so then crying ensued. got our shit vaguely together and left. In the car park I noticed a guy who had been there with his bubba looking at is with a frown, I think he was wondering WTF, well I could be imagining it but I was stressed.
Home for some afternoon tea and some Thomas video. James is obessed with the beads and wire baby thing I got from the toy library and is getting frustrated with it. After an hour or so I got down and started playing with him, I made a monster out of that Connex stuff and was pretending to biting James' stuff and him too, and chomping bits of Connex, James was really looking at it like it was real and jumping back when I made lunges for him, which was cool.
Out on the tramp for some bouncy bounce, he loves to hold my hands and bounce around with his eyes closed and a look of rapture on his face, I notice that he does that a lot on the swings too.
Up to the school for a little go on the bike and he tried for sure, I'm just gonna keep taking him until he gets it through his own way, but I will put some pipe lagging on the top tube so he can sit on that more comfortably, its what he wants to do and if it makes it easier for him, so be it.
Now he's in the bath and fairly tired I think.
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Thoughts for today:
Been feeling down about our situation, but at the pool I noticed two Downs kids, and also an Albino. At the park there was a little boy about two who didn't seem right he had trouble with his body movements, couldn't walk and was dribbling.
Those things made me feel better, which sounds odd, but what it did do was made me feel less alone. It's really hard looking at normal kids talking and pointing and all the usual things.
Second thought is that I have been concentrating on looking at tasks to do and getting on to them, and looking at my watch and saying right I'm gonna give myself five minutes to get the dishes sorted, and go hard out at it because time with James is important. So getting more efficient with my time instead of drifting and wasting time on the Internet. OK, on that note bloggage done and onto tea!
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Have put James to bed, very tired boy, fed him a decidedly average tea then bed, he was very pleased to be in it.
Well I wonder if James wants friends his own age to play with I know he likes being with me but it's not the same as someone your own age. I was at the park by Mums before tea and James went into the tunnel slide and a boy was coming up it. He may have been four or five but he spoke a foreign language (something European couldn't pick it). He kept coming up, babbling to James and clowning around falling over then sliding down a bit around the corner. James was loving it and giggling and making that excited noise in his throat and flapping his arms.
Then today there was an older boy about 8 or 9 up at the school riding a bike, James kept chasing him and looking at the tires. The boy would stop, then the bike would take off and James would chase and the boy would stop and look at James. James looked at his face and smiled a huge smile and giggled and jumped up and down in pleasure, the boy smiled back and looked at me.
I wonder if he misses Hannah a bit. Hannah is not esp a friend to him and he doesn't always react to her all that positively as she gets in his face and snatches things off him, but she is also fun and silly a lot of the time and doesn't help him and engage with him. Actually I miss her thinking about her.
One last thing I did a bit of a bathroom doorway puppet show with the connex monster for James and he quite liked that and was laughing and looking at it like it was real. But like a lot of things like that after a few minutes he will zone out and not notice.
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More thoughts:
Guess I handled the situation at the pool pretty well. I didn't buckle in to his want to get into the pool, that's because I couldn't! I had my undies on under my shorts (bad form getting undies and pants wet!
another thing was the soft gentle music playing from the pool reception are, James went still and smiled while that was playing. Gotta remember that, he generally all music, but can seem ambivalent to a lot.

Been thinking a lot about me and Michelle and where James might have come from. I do recall in my first class at school in our top filed prefab that I had trouble focusing on the class work. I used to 'day-dream' is what it was called. I would sometimes snap out of it hearing the class laughing and realising the teacher had made a joke of me to the other students. I do recall her following this up one time saying 'Maybe we should have a record player underneath Matthews seat saying 'Wake up Matthew, wake up Matthew'. I felt quite embarrassed and hurt by that. These episodes happened so often that I didn't learn to form my characters correctly. I never really watched when they showed how they were formed so later I had to form my own letters. To this day I write many of them upside down and people will stare at me writing stuff. I did feel like I was stupid as people were doing things around me I couldn't, but I guess perhaps thats because they were paying attention and I wasn't. I used to look out the window a lot at the sky (sometimes there were vapour trails) I recall.
Before long the school rang and told my parents they feared I was retarded. Of course my Mum said what utter rubbish, but it was agreed I would have to do tests. so I got tested for IQ. I do recall a few things from it, that there was a picture of a train and which way smoke was coming out of its funnel, and a picture of a comb with missing teeth. Apparently I passed with flying colours and that was that. the only other thing I really failed to get was long division. So I used to do short division and just do stuff in my head to hide the fact I was a bit dumb and didn't know how to do long division.
My wife has trouble processing speech. She will often repeat what I have said to her back to me word for word before answering. She also has terrible difficulty with listening to someone on the phone when other people are trying to talk to her (me, Hannah). She told me she had her (perfect) hearing tested multiple times as a kid as they thought she had hearing difficulties. Other things about Michelle are that she is obviously clever and she is quite social, but I have noticed sometimes she doesn't she doesn't see some body language or moods or misinterprets something. Not at all often but it's there.
I have also done this, and when I was young felt like girls in particular I could not understand. It took years to work out that whole side of it and so I was just very shy and avoided some situations, perhaps because I didn't understand them. who knows.

Just Dad and James

Just us two here as Michelle and Hannah are down the sounds. Last night I wrote down some goals for today, for some ideas on what to do so the day doesn't drift, and also just as reinforcement for me!
- To be responsive to his language, get down and be instructive, pointing and touching, do some drawings, swimming/bike.

So far today some of the things we have done include that we got up and I made James choose his toast topping. I put the Jam and PB and 'Mimite' in front of him. Took a bit but he grinned and was patting his hand on Jam. Don't know if that was a selection but good enough for me, and thats what he got. Have just been for a big cake/plant shop/dam loop, his walking and running have been getting really good, and I always love to see him use all his powers to clamber up the rock run.

I have been pointing out objects and naming them, and pointing to different geometric shapes. E.g something round is 'circle shape' (don't want him to get confused between what the object is and what its shape is).
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Oh and the best thing, which I just remembered is the reason I went to make this post is that he now looks at me when I say his name!!!!!!!!

Video day

Special Ed came around to take Video of James playing. We got him to play with jig saw puzzles and blocks. He is a bit bored with puzzles so only did one, he likes to spend as much time just feeling the pieces.

The plan is that they will review it then write up the SCERTS assessment. Then hopefully in April we will have a conference with them and little school and perhaps Vanessa (actually maybe we should get parents in too) to plan what it is that we are going to do.

Again today I think I got the idea that I need to tell James something then give him maybe 30 seconds to absorb it.
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After work I played a bit with James we went out on the tramp and had a nice old time. I was really getting him to throw the ball to me and really encouraging him. we had lots of laughs and smiles and cuddles.
Yesterday I took him up the school on his new pedal-less bike and got him to go down the slope at the playground there. He got so close to balancing, it's just when he gets enough speed up he just sticks his feet down. But very encouraging for a first time!

A post about Hannah

Today I went with Hannah to athletics. The first race was 800 meters, for the first 100 meters Hannah was in the front third, then she faded to mid pack, then to the back at which point she started walking then a bit of running then walking, then finally shuffling all by her self..a walk of total dispondency..and the look on her face of disappointment. I thought she was going to just walk off the track and cry, but the coach and another adult came along and encouraged her along to the end. I went and told her how pleased I was with her and that I thought she just 'got puffed' and had run herself out too early.

Then she did discus which wasn't much chop, then 8x40 meter in and out relays - there were about 10 teams and they must've done relays for about 25 minutes. Well Hannah basically gave up. She was the last team member her job was to run to the end, turn around and come back and handover. The team she was in were really fast and the girl running to Hannah was exceptional, sometimes Hannah would be first to receive the baton and 2nd to last coming back. She jogged along like she was in a pantomime or something, looking around and dawdling to the point of walking up to the girl who was frantically waiting to scream off. She basically checked out. Something was up. She kept taking sneaky glances at me. Afterward I didn't mention it even though I felt like kicking her arse (verbally). This took a lot of self control as I was really disappointed. We went and she got a sausage and licorice strap and was so shy that she had trouble in the queue and the lady serving sausages couldn't hear her. I wondered if she was having confidence problems afterwards. I can speculate on why she was not running properly in the relays but it would be psychobabble..

Later I had the usual trouble getting her to bed and instead of yelling and carrying on I was just calm and asked her why she was doing those things.
I guess I have had a bit of an epiphany, I cannot motivate Hannah in the right way by getting angry, and it just makes me feel bad (ala the tennis incident), so I need another way. Questioning without being accusatory seems to be a good way to get a dialogue going with her and gets things out sometimes.

So thinking back to the relay, perhaps the best way to deal with that would be something like "Hannah were you trying your hardest out there?" - i.e. the way Vanessa might talk to kids - vs "Hannah why the hell were you mucking around?" then extending the line of questioning as to why that might be. And pointing out that she was letting other kids down (but again without making her feel bad).

Anyway when I put her to bed instead of shouting and snapping (it was late) I just stayed calm and read a good potion of the book without hurrying. Then I came back in after a few minutes and told he how proud I was of her for doing so well in the early part of the race and she seemed to really like that (truth was I was quite surprised and stoked at how well she had been going).

Also I think I will take her for some runs. I don't think any real training for kids is appropriate esp not one like Hannah, so maybe some games like dad racing with a handicap, or chasing games. Really just need to work on speed first and foremost. Hopefully these early finishes I am now on will give me time to do this in the afternoons.

I think I have been a real grumpy b*stard to Hannah these last few months if not longer, I just get frustrated with her, but its not the way to deal with it, it just isn't. I need to treat her with respect and dignity. I need to put more responsibility on her - and give more rights to her, and I need to let natural consequences come about.

Sun 28/2/2010

Went to Matt Leaheys wedding last night. James hacked and coughed during the night and hopped into our bed and so we had a fitful sleep.
Couple of cool things happened today. I took James to John Walker park and we had a lot of fun there. He went on the little swing for ages, but also I went on the big swing and he sat on me and we had lots of giggles mucking around on that.
And the big thing...tonight he was looking through a toddler book and there were shapes of triangles and squares and diamonds and so-on, well he started pointing at them one (finger pressing on to the shape kind of poiting) after the other! And while he did this I named them, this went on for quite a wee while, I was so excited I called Michelle through.
Michelle has been getting him to use the iPod and some games where he has to press his finger on it, she has been guiding him with the finger pointing, so maybe thats it?

Pointing...brillant...I hope he keeps that up!

Thu 25/2/2010

Took James to LS this morning. Normally he does Monday and Wednesday, but we arranged for him to go today as a casual as he is being assessed by the child development team.
We got there at 8:35 and I saw one of them there already in the office interviewing the head teacher.
I did some playing with James with some farm animals and fences. He just wanted to play with the fences mainly. He did get some animals and smashed their faces together.
Took him into the mat room where there were balloons and fly swatters. I tried playing with him and got him to hit the balloons a bit. While bouncing a balloon at him I hit a little blonde poppet on the head 'hey you got me!' she said so I made a game with her out of it and another littlie joined in and they were having fun hitting the balloons towards me, while this was happening James was looking vacant and spinning around a bit.
James got a balloon and tried squashing it.
I then gave James cuddles and kisses and we left and waved to him through the window. By then two CDT people were there and they were observing this.
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So we just went to Pukitiro for a few hours. here's what I posted on another site:

"My wife and I just went and spent a few hrs with the Paediatricians who have been assessing my son, and they gave us the diagnosis of 'classic' Autism for James. Which was what I guess I expected and somewhat of a relief to be honest.

It provides us with some affirmation and means others have something to consider. It's hard when people say things like 'There's nothing wrong with him' - when he can't talk or interact normally with people.

Afterwards we went to the local Cafe and read through the material the Paediatricians had given us. I was fine and feeling OK with this until I came to a page with a picture of a teenager lying back in a Hammock. He is about 18, and is wearing a red polo shirt like James wears to little school. He has short dark hair. His Mum is reaching out and stroking his head and he is looking at her smiling and touching her arm. But what gets me is the way he is obviously Autistic, just the angle of his head tilted back and to one side, and the way he is smiling. And the fact he is handsome, just like my little boy.
James has everything else in his favour, he is good looking, healthy, tall, well built...but for his autism what might have been... :-(

Sun 21/2/2010

Took the kids swimming today at Porirua, James loved it he is getting more compliant now, instead of fighting to get out of the dressing room, and run into the pool naked, he knows the routine and is good. Got some hysterical giggles swirling around in the swirling pool, good fun. I could tell Hannah was missing some attention, but it's really hard to focus on her when you are intent on keeping someone little from harm.
Had a barny with Hannah later over homework and later over tea culminating in me taking her to her bedroom kicking and screaming for the first time in ages. She is really pushing the boundaries at the moment and was quite tired today, also she did Super Sunday swimming this avo, so anyway she got off to sleep good and early so hope for better tomorrow. In fact might finish her fairy castle for her tonight.
James stayed up late in his room. I went in about 8:45 and found him he had torn 'Thomas comes to breakfast' into bits and was chewing on some of it!
Exciting thing today was had James on the tramp at one point and was chucking a ball on there and against my expectations he picked the ball up and threw it to me, so I got him to do that a few times and caught it for his amusement! Woot!

Thu 18/2/2010

Yesterday was the big day..the visit to the Child Development Team at Puketiro.
It is in that block of land that Keneperu is in, and the buildings and environment it smacks of the 60's or 70's and has a slightly dilapidated, somewhat abandoned feel.
So we got there at 9:30 and went in. There is a big reception area packed with big toys so James immediately started playing. The specialists came along, there was Andrew the Paediatrician, Vincent the child Psychologist and Kylie(?) the speech language therapist. They went into a room and I went to take James in, but he didn't want to go into the room he headed for the door out of reception back to the outside outside. His wobbly lasted all of about 4 seconds then he came along OK, as soon as we got in the room he saw all the toys and put a big grin on. The three specialists were in three chairs facing us where two chairs were placed. James then did a most curious thing, he went up to each of the three people and stood in front of each of them and did the biggest smile at each one. He even touched the Paediatricians leg. Talk about turn on the charm! He then went off to play. To cut a long story short, the specialists then proceeded to ask us questions for the next two hours about James and would often come back to points or drill into specific things. While they did this they wrote notes. For a fair bit of the time there would be two of them questioning us while either the speech language person (initially) or the Paediatrician would sit and play with James and interact with him, do tests and takes notes. The speech language person spent quite a bit of time playing with him and listening to his babble and talking with him.
I noticed the Paediatrician had a pre-printed sheet with boxes and things on it, some had ticks next to them, some had crosses. Some of the things he tried to get James to do was throw a ball into a box (which he did eventually after showing James what to do, get him to hand objects to the specialist from assorted objects mixed together (spoons, toy animals, etc) which he didn't do. got him to walk up some steps, tried to get him to jump off them.
Other things I remember, the Psychologist was particularly interested in the regression that James had where his language skills went backwards when we went over to Melbourne. They covered pretty much every question I think they could ask about. His behaviours, interactions, habits, things he liked to do, things he didn't, his eating habits, sleeping. The paediatrician checked his heart, ears, eyes, throat, weight, height, head size, testicles, reflexes (knee test).
At the end they had a conference for 5 minutes and got us to wait.
They then brought us in and said first off that he was 'a lovely boy'!, they then said they wanted to see him at little school so we arranged that. That is next Thursday and we have an appointment with them at 11:30 after they have been there where they will give us his diagnosis.
By the time we got out of there it was about 11:40am. We felt like they had been very thorough, and in fact I was tired from so much talking!

Tue 16/2/2010

A good day, got my work done that has been hanging over my head (RFP).
Anyways, picked James up from Vanessa's. As usual when I went in he ignored me for a minute. Then when it was time to acknowledge me, he took my hand and led me to Vanessa's stereo, so I turned it on and held his hands and he did a fair impression of dancing!
Otherwise not much else to report today. All good.
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Just read about the possible relationship of Oxytocin to Autism. I also know it is released by touch but has to be skin to skin, so maybe I could cuddle James with our tops off! He certainly likes being massaged with the cream enough, and tonight when I was washing his body with the green pinetarsol stuff in the bath he certainly likes that too..hmm...
http://www.raysahelian.com/oxytocin.html

Monday 15/2/2010

Last night I came across Michelle in James room with him cradled in her arms. quietly sitting there with tears streaming down. My poor girl, wondering when James would ever cuddle her, or say hello mummy, or I love you.
I reminded her if he didn't love us and want to be near us he wouldn't hop into bed with us in the mornings. Or cry when we leave him at LS.
And that he can be cuddly in his way when the mood takes him (night times are often boisterous mood before bed!), and also that from my reading Autistic people have said they often wanted to be touched or held as children but it hurt.
But I know how she feels.
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I held up the peanut butter and Vegemite this morning in front of James to try and get him to make a selection along with verbal prompting. He just looked at them a bit scratching and grinning. I just waited and after a minute he said 'peanut budder' - he didn't point or say no to anything but it was good enough for me, so I said 'good boy James' a few times and made him his toast.
At little school he sat down in the mat room (his favourite, always goes in there). The others kids were playing with baloons and fly swatters to hit them, James just sat down in front of the CD player and looked at the display and listened to the music smiling. When some songs came on he liked he jiggled up and down a bit and wobbled his head. When one came on that he didn't like - a slow nursery rhyme - he screwed up his face and said 'No, no no' and sat there frowning.
I cuddled him and kissed and told him we were going, we put him on Nia's knee and he frowned a bit and wriggled a lot but not too badly, and Hannah and I both waved and said goodbye and blew kisses. We got lots of eye contact and a few little smiles.
Then we waved through the window and got solid looks instead of looking away and quite a lot of smiles at our goofy antics, and Nia made both his arms wave, he seemed pretty happy!
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After work Hannah went off to Athletics with Michelle, me and James stayed behind. He was keen to go out to the street and took my hand, then to Michelle's car which he obviously wanted to get into. I let him and climbed in and hopped in his seat. So I thought why not, and got in and asked him where he wanted to go. I asked if he wanted to go to the park. No response was forthcoming of course so I drove to our local park. At the park I kept asking 'James want to go to the park?', 'James want to go on the slide?' - blank looks so took him there by the hand and had a very nice time on the swings. Not much connection with me, even though I was being silly, I got him giggling a little. He likes to close his eyes, and lean back and swing back and forth. We got off and did the running up and down thing too, where I hold his hand and we run from here to there.
Back home after a good 45 minutes and I cooked tea. While I was doing this I sang songs and got such a good response, started drumming and whistling and carrying on, he loves it, and laughs and smiles, and I love the attention! I will do more.
Later I put him to bed and tried reading a book, Peepo I even sang the rhyming verses but he was in teeth gritted jumping mode, so left him to it.
Tonight I made a big triangle out of the Duplo. Last night I made a big robot, and he was quite intrigued by it this morning and didn't just smash it up.
Had a call from Auntie Francie tonight, and a talk about other people not seeming to take us seriously. She does and even raised it with us, and she knows of course..better than anyone. She told us Michelle's dad said to her 'Seems OK to me, was talking away'. Where to begin..try talking to him..or..say his name and see what happens. Has he ever talked to you?
Etc!
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Michelle told me about a woman at her work and her Aspergers 21yr old son who has no job and lives at home and plays Playstation all day. He has decided he wants a girlfriend and thinks its done through pick-up lines. His Mum cannot explain to him that that is not how it is done. But anyway every day she comes home he says 'hey Mum what about this one?'. Poor guy, he would never be able to understand the complex and subtle body language and rules about flirting with people. Sad, and of course a worry for me, that worries enough as it is.

Monday 15/2/2010

I held up the peanut butter and Vegemite this morning in front of James to try and get him to make a selection along with verbal prompting. He just looked at them a bit scratching and grinning. I just waited and after a minute he said 'peanut budder' - he didn't point or say no to anything but it was good enough for me, so I said 'good boy James' a few times and made him his toast.
At little school he sat down in the mat room (his favourite, always goes in there). The others kids were playing with baloons and fly swatters to hit them, James just sat down in front of the CD player and looked at the display and listened to the music smiling. When some songs came on he liked he jiggled up and down a bit and wobbled his head. When one came on that he didn't like - a slow nursery rhyme - he screwed up his face and said 'No, no no' and sat there frowning.
I cuddled him and kissed and told him we were going, we put him on Nia's knee and he frowned a bit and wriggled a lot but not too badly, and Hannah and I both waved and said goodbye and blew kisses. We got lots of eye contact and a few little smiles.
Then we waved through the window and got solid looks instead of looking away and quite a lot of smiles at our goofy antics, and Nia made both his arms wave, he seemed pretty happy!
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Sun 14/2/2010

Long day, seeing as Michelle had been out at a 60th and I at a Stag do (although we were home asleep by 1am).
Today James seemed a bit lethargic, generally.
A few observations:
He seems to get a bit bored at home. We went out to Mums for tea and when we left he seemed pretty happy to be going. I wonder if its that he gets bored, or that he likes being in the car. I think a bit of both, he does like the movement of the car, and also looking out the window.
At Mums he acted up a bit and Mum said, 'well he's got to learn' which annoyed both me and Michelle, which we found out later when talking. How is he supposed to learn these things? When he has no language? When he won't listen? Or look at us?
Through showing I guess, not through silly comments that's for sure.
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Had the whole family up at the school earlier in the day, with the scooter, trike and tennis stuff. James hadn't seem too interested in the playground but when a group of six older boys ran up on there he ran up the ramp and stood next to them, then after a bit went down the slide. I think he wanted to be around the other children even though he doesn't know how to interact with them. I think this might be why he likes little school so much.
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Thinking about the picture cards, maybe I could make some up for when things are about to happen so he gets the idea what they are about. A car one, and a little school one and so-on.

Sat 13/02/2010

James was up till late last night, as in 9:30 cavorting around his room and singing and blabbing, and reading books and wrecking the place! No rhyme or reason to it, as he had had a busy day, no naps and no chocolate before bed.
Michelle said while at Jo's house he burst into song, something unrecognisable, but several verses, and every one finished with a loud YAY!
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Today we have been tidying and are still tidying the house which was a shambles and doing load after load of washing, and playing with James at the same time, picking him up whenever possible and doing flips, and lying on the floor and wrestling and so-on.
Michelle went to the toy Library and has got a tea set and pretend cake with segments and candles. We have all been role playing at having a birthday by bringing the cake in and singing happy birthday, and blowing out the candles then pretending to cut and eat the cake, and having cups of tea, we have the teds out all joining in. James mimics us a bit, but it's not clear whether he understands.

I went out on the tramp for him for quite a while, I was out hanging out the washing and he came out to me obviously wanting my attention. I tried to enrol him in handing the washing to me, but he wasn't interested, he gently too my hand and led me to the tramp (I let him). On it I was singing 'this is the way we wash our hair, wash our hair' I made up lots of alternative sentences about things he does, e.g. going to little school, eating peanut butter on toast, visiting Marco etc and he really enjoyed that and was laughing and smiling.

Just been playing with the cars in the hall and trying to show him how to play, pushing them along the hall and going 'crash', he looks a bit mystified, and when he plays with the cars just likes to get down and push them back and forward and look at the wheels mainly. I have a lot more patience for this sort of thing now, knowing the importance of it, and that he's not going to develop unless we help.
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He has been doing puzzles. I think he's over puzzles at the moment. Been getting him to do some drawing with felts and pencils, he is babbling a LOT while doing it. I have been drawing circles squares and triangles.

Thu 11/2/2010

Ahh, my day 'off'!
After getting Hannah off to school, came back and put Thomas on for James who got very excited and started jumping up and down flapping his arms, giggling and making happy noises. I did the dishes, some laundry, packed some lunch and a few things and got enough of my shit together to get me and James out the house a little after 11am; destination Makara beach.

At Makara I got our coats and and we went for a walk along the bumpy seashore. I showed James seaweed (unimpressed). He of course stopped to run his hands through sand and I took a video. He tried once to walk into the water, but I stopped him as it was a cold day with a little drizzle and we had Jackets and shoes and longs on. There was a big Juvenile gull on the beach, and I was able to walk us right up to it, as in a meter away. James simply was not interested - or didn't appear that way - as you'd expect a kid to be.
We continued on and I took him for a walk around the rock pools at the point. There wasn't much life in them but I showed him some 'bead' seaweed. Also having been reading about odd sensory issues that kids have I got some kelp and ran it over his palms, 'slippery' he said and pulled his hands away repeatedly.
I took a few videos as we clambered around the rocks. A few times I made him walk over the rocks by just walking 10 meters away. A bit scary as he has to work really hard to do this and also he stands on the peaks of the elevated rocks sometimes but overall he is pretty good and shows good judgement.
We did the stone throwing game (we throw stones in the water and I say 'splash'!).
He seemed to be a bit disgruntled by this time, and on the way back he got me to carry him a bit. He kept spitting down his front and I realised it was when we were near the smelly seaweed. He played some more in the sand and I showed him how to dig a hole with a flat stick which he took and did lots of gouging grooves in the sand, but he wasn't that happy particularly with the small gritty sand stuck to his hands. As I carried him heading back to the car I could not get him to look at me. We approached some seagulls and I said 'seagulls' a few times, and he popped out the word. When we got back to the car his face lit up with a smile and he said 'car' with obvious relief. I washed his hands, then fed him in the car and he started to look at me a bit when I tried to get his attention.
We had been out walking about for 45 minutes, so it might have been hunger, tiredness, sandy hands and wet sandy feet, wanting to sit down and rest and be warm, being a bit overwhelmed by a new experience, or all of the above.
I guess the not looking thing is associated with some level of unhappiness. I notice this when I take him to child space, when I leave he tries not to look at us.

Headed up Karori way and through the backroads to J'ville Library. By the time we got there I was a bit zonked. On the way there he just sat silent in the back looking out the window and slowly eating. At the library I chose a few books for him while he played puzzles. Went to the Mall Cafe, then back to car and home.
At home I uploaded the video's to Picasa and showed him, he loved them and was giggling and grinning away. He also liked the recent photos of Hannah, and I pointed out everybody's names in the photos and vids; 'Thats James, that's Hannah' etc.
Mucked around at home a bit then up to school to get Hannah. Made the kids popcorn, played with James and his Duplo a bit and after some mucking around we went to the pool. He loves the pool. We have a bit of a routine, it starts with him getting into the pool wheelchair access ramp, then mad thrashing about in the big pool with me pulling him around and getting him to jump off the side, and him toeing me in the nads! Then we go to the learners pool for thrash around in there, then finally into the toddlers pool to be warm.
When we first go to the pool he is really engaged with me, but by the end by the time he is in the toddlers pool for a while he is really in another place. I can be in there just me and him and he will glide past me without even looking at me, or looks through me, even if I am talking to (at!) him.

After Hannahs lesson she came into the toddlers pool for a bit, then we went home for tea. After tea he got into his Duplo again and I played with him. He just likes to push the bricks together and pull them apart. I try to join in but he's lost in just pushing them together and pulling them apart in seemingly random way. So I started making towers, then a wall, and finally little houses (like jails!) that I started to put figures into. At that point he started to become interested in what I was doing. I made the figures run up and down his arms and added a pig and things like that and he was really taken with it and seemed to be copying me a bit with them. Put the kids in the Spa (he was grinning when he went in the water again) and to bed.
I think I will do more of that type of playing it's almost like he needs to be shown how and what to do in play. So I will keep it up. I haven't played with toys with him in the past as I've always had something 'to do' and I always thought kids just did playing automatically..but bugger it now, nothings more important than my son, other things can wait or be done later. Also it takes a little bit of practise to remember how to play like a child again, but once you get back into it - and it does take a mind shift to engage your imaginative mind again, it's creative and fun.
Thinking about him now, imaginative play has been almost absent from his repertoire. He does play with cars and his Thomas but it is mainly to watch the wheels go around and around. He does put the tracks together a bit.
I will make another house or something out of all the Duplo ready for the morning to surprise him!
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Note. Every time we went to do something else today, e.g. heading back to the car from the beach, getting out of the pool, I carefully explained it to him. I do not know if he is listening or what he understands but certainly it seems to make a transition to something else easier. I guess even if he doesn't understand my words he knows from my careful talking to him that we are about to up and do something else?
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Today when he was upset and wanted to go back to the car, I kept getting down face to face and asking him what the matter was, and he was looking at me and frowning. It made me think about the other day when he was trying to tell me something with the cloth, he was trying so desperately hard and could see it was so frustrating for him. It must be so hard for him sometimes, and I also think about times when he appears deaf where the communication problem is very obviously in the other direction.

Stimming, normal people do it when emotions are extreem

Found this here http://aspieperspective.blogspot.com/2009/04/stimming-autistic-and-nt.html while googling 'stimming', heres the except that I find fascinating:

Discounting children's use of rocking horses and adults in rocking chairs, there's one circumstance in which NTs frequently rock. When they're given extremely distressing news (e.g. the death of a loved one), many individuals will have a reaction that's quite familiar to many autistics. Specifically, they will start crying, almost hold themselves, and start to rock back and forth. Despite the extreme circumstances, this rocking serves almost the exact same function as it does in autistics: it's a soothing motion, one that helps the individual cope with an extreme emotion.

In NTs, head-hitting and head-banging is usually reserved for moments of extreme frustration or what I like to refer to as "D'oh!" moments. While NTs usually don't engage in this behavior with the same intensity (or frequency) that many autistics have been known to, that is a quantitative, not qualitative, difference.

Hand-flapping also follows this pattern. If you've ever watched videos of people as they are informed that they won the lottery (or Publisher's Clearinghouse sweepstakes, etc.), you probably know what I mean: many people in such circumstances jump up and down, waving their hands excitedly... in a manner quite familiar to most in the autism and autistic communities.

Finally, object-spinning is mostly a matter of autistic children (which is to say that autistic adults don't do it nearly as much). Parallels in NT children are pathetically easy to find. Simply put, neurotypical children like spinning toys. Autistic kids like to spin toys... including spinning toys.

So does that mean Autistic people just have stronger emotions, or express stimming at lower levels of those emotions?

Wednesday 10/2/2010

James woke up pretty happy this morning about 7:15, and was sitting in his bed smiling for a wee while. I went in to say hello as I always do and gave him a cuddle. He went into our room after a bit and I realised his nappy smaelt pretty bad so got Michelle to change him. He was reluctant but we explained that 'theres poos in there' and 'we need to change your nappy', and so he came into his bedroom. He initially wouldn't come and sit on the floor and Michelle kept coaxing him with language - instead of picking him up and putting him on the floor, and after about 30 seconds he came and lay down to be changed.

After that he got in our bed and was snuggling under the covers. I chucked the sheets and blankets over his head so he was covered - I got the idea from his wriggling that maybe he wanted to do this and was struggling to 'get under' the sheets, and he seemed to enjoy it.

I then told him it was time for breakfast and to come with me. He was a little reluctant at first mention, but by repeating myself about breakfast I got him to come along easily - and holding his hand.

I placed him on the stool and asked him if he wanted toast or weetbix. As usual no response. He was not really looking at me. I asked several times. I looked around for the pictures but we do not have one of weetbix, so just made him weetbix. While the weetbix was in the microwave he grizzled a little and was looking over towards it. Wehn I got the weetbix out and put it in front of him he just looked at it, so I started him off by putting some in his mouth and giving him the spoon and so he started feeding himself.

He ate about 2/3 and then started making noises about getting down. He will not get off the stool by himself. I also made toast with peanut butter. I got the peanut butter out and said 'peanut butter' and held it in front of hima lot but he was not really looking. I put the jar on my head and got a smile but nothing else. He didn't seem interested in the toast when I made it - just not hungry I guess.

I mentioned little school this morning a few times, this as usual gets a smile and some wriggling type 'happy' movements, which is cool. When he's very happy he does jumping.

When I came to get him dressed he was in our room, I was in his, I called him to come and get his 'little school tshirt on' and he came and did this. I put his short on standing up and said 'feet in the holes' as I always do and he put one foot, I asked again for him to put the second using 'other foot in the hole' but he didn't and seemed away with the fairys so I did this myself. When I do any dressing he likes to hang on to me and stops using his balance.

After that Hannah turned the TV on and he sat down to watch, I turned it off (not allowed) and he just sat there, after a while he played with the remote a little maybe to try and turn the TV on, who knows.

Through the morning we did quite a bit of the 'jumping game' on the bed and other places, he was quite keen and would come and seek me out. I would do this accompanied with counting or 'bounce, bounce, bounce'.

As usual when it came time to get in the car he came easily with prompting and no need to hold his hand - 'come on James lets go and hop in the car, we're going to little school', but he is very reluctant to walk down the stairs himself and groans, so I hold his hand. I do this by only letting him hold a finger and stay in front of hi, that way he can't rely on my balance and actually does it himself - otherwise he would hold on and use my balance and swing around, but I think it gives him reassurance. Perhaps walking up and down is something I can work on with him..

When I parked the car at LS I got out and was waving at him through the window and making faces but getting little reaction, he was away with the fairies so I opened the door and was putting my face next to him and being silly and nuzzling and kissing him, and got lots of smiles and wriggling. Got Hannah to take him in and when we got in he started grizzling so I took his hand as I went around the place and he was happy at that - it's almost like as he gets in and turns around once or twice he loses sight of me and worries that I am gone. We then went and played in the mat room with some little elephants of different sizes and shapes that you connect up, Hannah leading the way with making a big ring. I showed James how they click together and he started doing this. We stayed probably 10 minutes talking to Lisa and then I told him I was going and gave him quite a few kisses and some cuddles. He seemed OK, maybe a little tired (saw a yawn) or zoned out. We then got up and left waving to him and saying goodbye with him giving us some eye contact, he frowned a little but was otherwise fine. It was quite in there, there were no other kids, and I think the settling time and peace (also classical music was playing quietly) helps.

We waved through the window and he did look at us and did a little bit of wriggling and frowning but was otherwise good, so we left.
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THOUGHTS
I have been thinking about the sensory side after watching vidoes on the Taylor Morris site last night. For example her talking about how fleece actually hurts her hands and thumbs but she can wear it fine, and how some sounds cause physical pain. Also the 15yr old boy talking about going outside into the noisy bright world and it's like everything goes upside down, and starts spinning.
I now wonder if the wriggling is a reaction to certain materials on him? I wonder how things feel to him in general? And I wonder if he is hurting all the time with some things..or not. He does seem to be the type that when things are bothering him - in as much as we can tell - that he becomes withdrawn more. Sounds don't seem to bother him as far as we can tell, but it could be they do and we don't know.

In other thoughts, how am I feeling? To quote Marcellus Wallace from pulp fiction "I'm pretty fucking far from alright".

Tue 9/2/2010

Last I night stayed up late on youtube looking at vids on autism..till 1:30PM. In the night James got into our bed.
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Michelle got James up this morning and I went and had a 'talk' with him while he was eating his peanut butter on toast she had made. He was pretty zoned out, but wasn't looking that interested in the toast and after a little while started grizzling so I got him down and put his toast on the low table. He grazed a little and then went walkabout.
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Picked James up from Vanessa's. He didn't even look at me for a minute or two, although I got down right next to him where he was sitting at a chair playing with felts not doing much. I took a felt and started drawing but he started pushing things around and hissing, he obviously wasn't happy at that. Made chit chat with Vanessa then left. I had walked so we started walking down the road, he was a little confused and wanted to walk back into Vanessa's, but I got down low and mentioned a few times that we were going home so he seemed OK to go along with me, but after a few meters seemed to want carrying so I did. As I walked down the street I talked to him about what was going past bikes (cyclists), motorbikes, cars and pointed. But he didn't look at them or pay any attention to me, he just looked around at the trees or the sky not really focusing. Its hard to know what is going on there. I talked to Michelle and she thinks it is if he is unprepared for something or it is unexpected he doesn't respond for quite a while. It's possible he was just tired and overwrought or over stimulated from having Holly and Luke

When we got home he spotted the spa and went up and was playing with the cover, obviously keen to get in so I put him in it. He was still quite remote. After a few minutes Mum came home with Hannah and Hannah got in too, Grandma came over to say hi to James and she got big smiles and lots of looks. James started to perk up and wanted to hold my hands.
Grandma left, then Michelle came home with tea. While eating tea James was looking at the sun through the cane blinds and constantly closing his eyes tight then opening them as he ate.
He perked up after tea and I played with him a little bit on the floor and got big cuddles where he lay still on his back on top of me (OK sort of cuddles!) and I cuddled him. We then played the usual 'stomping on dad' game and he squealed at ear splitting volume. A bit later I took him down the bedroom and played in the bed, hiding under the sheets and tickling him, he enjoyed that.
Then chucked both kids in the spa again (well they got in, James with my help), then off to bed. Hannah read James a book and he never got out of bed, I went to read him a book and realized he was just toast, and so shut the door, and never heard more, kaput to the world at 7:45PM. He was just dog tired and has been the last few days so he should get a good rest. Looking forward to seeing him in the morning and engaging with him, there's definitely days like today where he wakes up tired and it makes it hard probably for the whole day, other days where he wakes up smiling for all the world.
Found http://taylor-autism-aspergers-syndrome.com/ and got a real boost from that.

8/2/2010

Felt quite blue at work today, thinking about James and what might and might not be. Didn't do a very good job of being a good employee although managed a good burst in the afternoon.
After I got home from work I changed into my SI (Standard Issue shorts and tshirt) and played with him on the floor. We played with Duplo bricks but I think he was frustrated as he was breaking the bricks up and sort of smashing them together. We played a bit with him standing on my chest and me holding his hands to support him as we do, with him jumping up and down and gritting his teeth and making sort of grunting and hissing noises. He likes to almost headbutt me, and sometime does. I wonder if it's him letting a bit of pent up energy, frustration etc out. He also squealed at ear shattering volume a few times, my ears are ringing a bit now!
I took him out on the tramp and we bounced around and played a bit. I would love to hear him say 'posie' or 'meenie' again (Ring a ring a Rosie song or Eenie Meenie song) like he used to. A few planes went over and I pointed up at them and said plane. The first few times he looked at them, whether from the noise or me saying plane or pointing I don't know. The next few he didn't really look at.

Then we went and had tea. James stuffed himself and while having tea and watching him eat and stare off into space I lost it and tears started flowing with all the frustration and sense of loss I am currently feeling so had a good talk with Michelle.
After tea he perked up and we played some more, I love the way he now seeks me out if I walk down the end of the house..I guess he knows he will get a bounce up and down at least.

Being such a nice evening I decided to get the hell out of the house and so took him and his little trike up to the school which we haven't done for ages. That was awesome and he tore around on it at the tennis courts, then onto the ramped concrete path by the playground tearing down there at high speed (for a little plastic trike!) in complete control even when braking (sandal brakes). He is a bit of a natural actually and lifts his feet for more speed and knows the radius of the turns he can take at what particular speed. This is something I want to get him more into and ultimately onto two wheels.

He used a couple of words tonight up there. At one point he walked away from his bike and then when he returned from going walkabout, saw his bike, smiled and said 'bike'! He also said 'circle' while sitting on the ground looking at and rubbing his hands over the yellow paint of the netball court shooting circles. And he also said 'shadow' after I said it about ten times while pointing to his shadow. He is funny with shadows they are a source of great interest to him. He gets off his bike to look and runs about flapping his arms about and looking at the shadow. A couple of times I put his bike somewhere else and then pointed to it and said bike, but he just doesn't get pointing..yet.
While I was up there watching him I thought about the poem 'Welcome to Holland' and felt pretty happy.
http://www.child-autism-parent-cafe.com/welcome-to-holland.html

I took him home and he was pretty unhappy at being home he wanted to be on his bike (which reminds me I must fix the gate latch ASAP he was playing with that to get back out). This was fixed by an ice cream from Mum and then two bananas.

When I went to wipe his face with a wet face cloth a very interesting thing happened. He basically freaked out and the following happened:
Crying and wailing and jumping up and down, followed by him putting the cloth repeatedly in my hand. We all came over (me, Michelle, Hannah) to try and work out what was the problem as he was babbling a lot too and we are trying hard to open up communication with him. Eventually he grabs Hannah and Michelle and leads them outside by the hand. And he keeps putting the cloth in my hand. It seems he has put them outside because he doesn't want them here as he's trying to show or tell me something without them getting in the way.
I am trying to put it back on his face as he doesn't seem to mind that although it doesn't exactly make him happy, eventually I wet it some more - at which point he gets frantic as I take it away to the tap - ball it up a bit and put in it his mouth as I wonder if his teeth are bothering him, and he starts to suck on the cloth and becomes quieter at which point I work out he is thirsty, I get him his drink and immeidately peace and happiness reigns!
I wish he could say ' drink pease' like he used to, but at least he was trying in his way.

To bed and he was stuffed and a bit grizzly.
I feel a little bit bad about not spending as much time with Hannah as I could at the moment, so I read her a good chapter of her book and played the 'pillow' game with her ( pretend to be going to sleep and she is annoying pillow that must learn to behave and not wake me up).
A pretty poor day that turned out pretty good in the end.