h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Hi Websailor,

Two pairs of keys did't turn up - one's been replaced and little 's are still missing. I think they must be in the house, so I'm not overworried, but I do need to make sure that he has keys for when he comes home from school.

The counselling session has raised question more than anything. Roy gets to see the counsellor on his own next session, me the one after and both of us the one after that. It will be intesting to see how it goes. The lack of 'we' is something that concerns me.

As far as the birthday is concerned, it's tomorrow, so I can't yet tell you how it was.

How strange about the birthday, I must be getting pickled in my old age, or my reminder service was running early!! Thinking about it perhaps it was.

Anyway, have a good one. Happy BIrthday again. Any plans for it?

You know, I am not sure a lot of men do the ' We' thing, except when they want to take credit for something we women have done, or is that just the ones I have encountered?

Take care,

Websailor

I went into Greenwich for my birthday to see a sculpture exhibition, only to find that it was open Tuesday to Saturday (and therefore not on Monday). Pootled round a bit and found some really nice parts I didn't know about before, such as a leafy cemetary. Bought some cheap grup and sat by the Thames with Roy and watched 'Calamity Jane' in the evening - which was brilliant. It's been ages since I saw it and I'd forgotten how good Doris Day was.

I spoke with Roy about the 'we' thing and he said that what the counsellor said was right and that as far as he was concerned, that wasn't a problem. It will be interesting to find out what goes on in his individual session. One of the things that struck me earlier today was that it seems to be me who is required to do all the changing. I haven't asked him to change much - except to stop judging, criticising and complaining quite so much.

Does your hubby see himself and you as separate entities and not the third 'relationship' entity? In my marriage, we didn't have plans for what we wanted, except when we were trying for children.

While browsing around, I found one of your journals, that I replied to earlier, and then, looking for something to do while putting off finishing a report for my final uni assignment, I found this journal entry.

Can I ask you about the 'suspected ASD'? For your son? It sounds like he's around a year younger than mine who is also strongly suspected to have ASD. J is waiting for an assessment (and has been since April), although I first asked about it when he was 3. A lot of the traits that other people are recognising as ASD in him I'd always thought were part of the ADHD he is diagnosed with - not having mixed with other ADHD parents I have nothing to compare him to, but now people are telling me that a lot of the problems they've seen in autistic children they've worked with in the past.

It's so frustrating waiting - I saw an orthadontist recently who complained about his 'bad attitude' because he wouldn't look her in the face at all while she was talking to him.

Sorry to drop all this in your lap unexpectedly, but not having a diagnosis, and maybe the doctor who ordered the assessment is completely wrong anyway it's difficult to talk to other parents.

'Can I ask you about the 'suspected ASD'?' Yes.

Little is just turned 12. The junior school brought up the subject in February and said it would arrange a visit by the speech and language therapist, but it took ages to happen, and then a visit was supposed to happen from someone else (another speech and language person, I think), but it didn't. We've been twice to the hospital, but the second time, nothing could be done because the speech and language therapist visited the school on the only day he wasn't there - he was visiting his new secondary school - as were the rest of the class.

Little doesn't look people he doesn't know in the face and it took me ages to get him to look at me when he talks to me. Did you explain to the orthodontist what was going on? There's also a big problem with self-organisation and leaving things until the last moment.

I can remember a story about a child with ASD being difficult in a supermarket and other mothers tut-tutting. His mother said loudly to no-one in particular 'He's got a disability!' and they all shut up.

I have never discussed it with little . The first consultant said I shouldn't (at least until he has a proper diagnosis) and I don't want him to be labelled. It could make it worse.

The consultant gave me an A4 booklet about ASD and whilst he doesn't meet all the 'signs and symptoms', he does show some of them. Eye gaze avoidance being one of them. The booklet is called ''Information for parents: Autistic spectrum disorderss (ASDs) and related conditions' and can be obtained from:

DfES Publications
PO Box 5050
Sherwood Park
Annesley
Nottingham NG15 0DJ

Reference ESPP12
Email: [email protected]

http://www.earlysupport.org.uk/modResourcesLibrary/HtmlRenderer/Informationforparents.html

You can download the booklets from the link.

Have you spoken with your doctor? I took little to ours and he was really helpful. I'm quite lucky to have a really nice one.

How's your J getting on at school?

J's currently not in school - he's at a 'pupil referral unit' on a six week placement because of his behaviour - which is mostly caused by other children in that he has no idea how to relate to them, and so gets them and himself wound up. Those children so inclined then happily wind him up. Because he has ADHD (although now people keep telling me he doesn't show many signs of that these days) his impulse control is bad, so he often lashes out.

He's also suffering because his primary school used to send him out of the classrooms to sit on his own, so he's learned to defy teachers in the anticipation of being made to leave the class and so avoid doing whatever it was he didn't want to do. Obviously this isn't working at secondary school (He's coming up 13 now). He spent most of year 7 banned from PE and foreign languages.

When he was younger we used to say he had a plate glass window between him and the rest of the world. He would look at me mostly, but when being told off or 'spoken to seriously' he wouldn't look anyone in the face, including me. He now hardly ever avoids my gaze, but still does it to my parents and two of my brothers. One he's very close to, so will look him in the face generally. He avoids looking at all strangers when they speak to him (if they are talking to me, he's fine!), and will pretty much avoid talking to or socialising with children as well (even some of his cousins). I did tell the orthadontist that he was being assessed for ASD, and she apologised.

J's behaviour is pretty 'normal' for his age when he's with me or his dad. So the normal sulks, defiance, slamming doors and refusing to wash his face and brush his hair! And having no other children to compare him to, it's taken us a long time to realise that perhaps there's more than ADHD to him. When he was three I wanted him checked for ASD, but I kept being told there was nothing wrong with him (even when I had to collect him 15 minutes early from playschool every day). It wasn't until he went to school and his behaviour became aggressive as well as disruptive that they finally referred him to a specialist.

It was his specialist who decided to send him for tests. His file is being looked at on Thursday, when they will decide how to prioritise him on the waiting list. Despite him having already waited since April.

He's recently been given a Statement of Special Educational Needs, but it doesn't go far enough so I am appealing. He needs more than mainstream can offer at the moment, but because there are no appropriate schools in Essex, the LEA are resisting. They'd have to send him to a neighbouring county and of course, although they deny it, is the issue. So for us, a label is becoming essential. Although the LEA say even if he has AS they'd want him in mainstream, the tribunal may well think differently.

Sorry, that's a bit long, but I was pleased to see someone else in a 'is he/isn't he' position as well. J's language isn't an issue, he's measured as very high on reading, comprehension and language when tested, and his learning ability is very high (which is why there is a problem finding a school) but a lot of things he measures far below his age, so needs a hell of a lot of help. He's in the top English group this year, but can't write and can't spell. You may see the difficulty...

'having no other children to compare him to' - oh yes I understand that. And they don't come with instructions, do they?

I'm just wondering what kind of support you are getting? I was invited to join a group at little 's junior school (just before he left and so I only went to one meeting) for parents of ASD or suspected ASD children. He was older than most of them, which probably means that his symptoms were less severe than theirs. Are there any local groups that might be helpful? The school or health authority might know - or the local authority, who keep details of local groups.

I found a website a couple of days ago that I'm finding helpful for ADD/ADHD, although I wouldn't vouch for its helpfulness with all of the ASD issues: http://www.instantaddsuccess.com.

The main things it suggests are breaking things down into very simple steps and components and doing things in short focussed bursts - eg using a timer for tasks.

I'm not clear what help J is being given at school. If he's like little he may tend to blame himself completely alternating with taking no responsibility whatsoever. I imagine that at his age his hormones are starting to kick in, so that's not necessarily helping.

One of the ways of getting through to little is through logic. Does J react well to this?

Do let me know what happens on Thursday.

I'm not really clear on the help he gets either. He's supposed to have a word processor, but it's not arrived, and he is supposed to get 21 hours a week of TA support. Because his statement was issued in July, the school did nothing until September, and then he left before they'd implemented any of the changes.

He's always been on 'School Action Plus', so is given targets to meet, and they can be anything from academic skills he's lacking to socialising, to doing what the teacher says. His targets at the unit for this week are doing what he's told, not talking in class, and not just giving in when the work seems a bit hard.

He often shows no remorse, which I suppose is like not taking any responsibility, hardly ever blames himself! And has no understanding of heirachy at all, so he's not likely to take any more notice of the headteacher than he will of the teacher who's just sent him to the head.

I haven't joined any groups - never did even when J was younger, I don't want to be seen as part of 'that' crowd, and I suppose that's the wrong attitude to have. All the crumbling I'm doing at the moment is because I've got hardly any support, so I should be looking for something like that. I tried our local SNAP (Special Needs and Parents) a couple of times, but didn't really seem to get on with anyone enough to actually go to meetings etc.

J needs structure, so lots of lists, rotas, alarms and yes we have a timer. That's usually to alert him that it's five minutes before he's got to stop whatever he's doing ready to do something else. I've just started using a big calendar/planner and I can see that's relaxed him a bit as well.

That looks like a good website, I'll have a read, thank you!

Little is/was on Action Plus too and like you, I'm not really sure what that has meant for him in terms of support.

Like you, I wasn't really a joiner of groups. I did join an ante-natal group, but I didn't really have anything in common with the other mums - they had husbands and were quite a bit younger and richer than me. 'I don't want to be seen as part of 'that' crowd' - yes, I'm more or less in that position too, but I realise that I do need support. It's a kind of squeeze - I need it, but am not comfortable going to get it.

I'm intending taking some of the material from the ADD website to talk to little 's teacher next week. It will be helpful if she can have the same strategy as the one I'm trying.

Does J react well to the timers? Often I find I'm trying to do several things at the same time, and aren't really as focussed as I would like to be. Maybe I should try the strategies with myself!!

Yes he does - he is better when he knows what to expect. I've always said 'in five/ten/whatever minutes you have to 'whatever it is'', but as he's older and his concentration has improved he gets more involved in what he's doing.

I either get him to do it, or I set the timer for the correct minutes, it goes off with a lovely loud 'ding' and he starts packing up whatever he's doing, so it works really well.

Stops all that screaming, shouting and tears. For him as well.

I was sent a leaflet from the National Autistic Society (I had a chat on the phone and they said it couldn't hurt to send the info, even if he never got a diagnosis) about how schools can deal with children with AS. Nearly everything in that leaflet would help J, but the school are reluctant to put that much pressure on the teachers. It may be with a diagnosis they would have to, but it's one of the reasons I want him in a different type of school.

'I set the timer for the correct minutes, it goes off with a lovely loud 'ding' and he starts packing up whatever he's doing, so it works really well.' There's hope for mine, then. He's still at the protesting stage, but I think he's starting to respond. It takes consistency.

'but the school are reluctant to put that much pressure on the teachers. It may be with a diagnosis they would have to, but it's one of the reasons I want him in a different type of school.' I wonder what you options are?

Someone at work told me of a teacher (I think an ICT teacher, or maybe maths) who would randomly drop a pencil and his class had to drop their pencils, get off their chairs and twirl them round. Kept the energy in the class high and provided punctuation in the class time to keep the focus. I'm intending to discuss this with the teacher next week too.

My options for another school is a 'special ebd' school (emotional and behavioural difficulties) but they also deal with social difficulties. I won't link to the particular one I want, in case he does get to go there. It has less than 50 children there, and will teach self-sufficiency, how to deal with school, how to deal with his own 'issues' and give him an education too. It's residential, which is a shame, but it's too far to go every day.

The only trouble is that most special schools have a much lower academic record than comps, so I'd like him to be back at mainstream for years 10 and over, but the longer it takes to get him in there the less likely that looks.

I like the idea of the pencil twirling, and I hope the timer works for you. J just loses all track of time when he's engrossed, and I hate moaning at him for concentrating, when that's something he's not long learnt to do well!

I was thinking that a Steiner school might work well for him, but there's cost involved as it doesn't come in the national curriculum. Or another specialist school like a Quaker or whatever the one is where the children vote on everything that happens - I'll think of the name shortly - ah Summerhill school. Was it that kind of thing?

No! J hasn't been treated well enough at schools in the past for that to be of any use to him at all.

It's a residential school that teaches things that for most children come naturally - like sitting still, concentrating, how to have a conversation, how to socialise and relate to children, and the teachers are specially trained in dealing with temper tantrums, and physical restraint if needed. He also needs structure, and to be able to rely on someone to tell him what is happening, or when nothing is happening while he learns to make his way in the world.

I've been away this weekend, and due to a change of weekends with his dad, he spent the time being moved about various relatives. When he came home tonight he wouldn't give me any eye contact until I asked for it.

I imagine you've probably had quite a hard time of it, Mina. I wonder what he thinks about himself. Little 's self image seems to fluctuate. Mostly it's as an OK person, but sometimes he gets quite distressed and gets very low. It doesn't happen as often these days.

Is change difficult for him? I think mine was very worried about moving up to secondary school, although I think that he's coped very well. We had a meeting with the school today - I had thought that it was just going to be me and the teacher, but it turned out to be a meeting for all parents of his class.

Is J interested in music? I gather than music lessons can be very helpful both for giving structure and for helping with co-ordination difficulties.

Change is one of his issues - his primary school tried to warn him of any changes, and I think that's why he finds secondary school so difficult - so much of it!

J doesn't usually try when things get tricky, he thinks he'll fail, and at one point his doctor thought he was depressed (no idea why!), and I know his self-esteem has gone way up since being at the unit, so it must have been low to start with. I don't notice 'low' points as such, but I've always praised effort, not attainment, so perhaps he's better when he's with me.

He doesn't do music. Got asked to leave one toddler group early because he wouldn't join in singing nursery rhymes with all the other kids. Hardly ever choses to listen to music, which I find really difficult to understand - at his age I was clued to Radio 1! He'd never dance with me when he was little, like other kids do with their mums, not at home, and not at family parties either.

How did your meeting go? I had a meeting with the SENCO before he started secondary school, he got a special induction day all to himself, and still he managed to get himself into trouble on the induction day with all the other primary school kids.

Things are looking up though - today he was chosen to help out at some tournament at a local sports club, tomorrow he's going to the cinema with the unit, and he's also been invited to see STOMP in London with the unit on Thursday - not all the kids have been invited, so he must be getting on really well there. He might not go to London, because he's anxious about going without me, and we went to see STOMP earlier this year.

I just hope they are doing something that will benefit him in the long term, but I think that he'll be worse when he goes back, because he's experienced life being fun.

Change - yes - little didn't like that even when he was at pre-school. He hated having to change rooms as he got older.

With the secondary school, it wasn't as bas - I think because he was much better prepared, what with school visits and such.

It's a shame that J doesn't like music.

The meeting wasn't what I thought it would be. It was a meeting with all the parents of his class. I've arranged another one on Friday morning at 7.30am.

I haven't seen Stomp, but I gather that it's really good. I hope that all the immediate things work well for him.

How does little cope with moving through the corridors between classes, and the lunchtime crush?

I do keep trying to get J into music - he's got a stereo in his roon, some cds and tapes, and an MP3 player his cousin bought him and loaded up with some songs. Actually he's taken that with him in the taxi this morning, so he's trying to make a liar out of me!

When I was driving him to school he seemed happy with the talking and competitions on the radio, while I prefered the music!

How does little cope with moving through the corridors between classes, and the lunchtime crush? He's not said anything to be about it. I'll ask him tomorrow.

I think I was lucky about music with little . I used to sing to him in my tummy and when he was little and I was having difficulty in getting him to follow instructions, I found that if I sang them to him, I had a much greater chance of success. My mum used to sing to me (although not sing instructions) and I think this helped me love music.

In recent years, he's also been exposed to classical music, and I think that's been helpful too. He goes to bed most evenings listening to the Last Night at the Proms. It was a birthday present two years ago and I was really amazed how much he likes it.

I understand that Mozart is meant to be the biz as far as helping the brain get better and also helping with co-ordination. When Roy's around here, we tend to have ClassicFM on in the background. Music with a strong beat can be counterproductive and I'm fortunate that he's not into that.

What kind of music do you like? What kind of music is J listening to?

I listen to tatty old pop music! From the 1950s, right up to whatever is playing today. My parents liked to listen to the music from when they were growing up, and now I do the same, so J is getting music from two generations. I rarely listen to anything else, although we did catch the theme from Star Wars on Classic FM in the car the other week. He gets annoyed if I sing because I'm 'ruining the song'. I didn't think my singing was quite that bad.

I had heard about Mozart before, but hadn't done anything about it, and we don't have a radio in the house anymore - the last one got dropped and broke and I've never replaced it.