hatter

I found both makaton and pecs not only provided a means of communication, but without a doubt precipitated Ivan's language explosion at the age of 3 1/2. I thought Ivan was going to remain non verbal, and will never forget the day when he first said 'I want' when using pecs

Every family is different- I have a friend with 2 NT children and they always do everything together around the house- if gardening needs to be done then they all go out and do gardening etc. My friend spends her whole day entertaining the kids with craft activities etc. the children can't even watch a video by themselves- their mum has to be there all the time giving them full-on attention! I don't think this can be that good for the children- people need to learn to entertain themselves to some extent. I think the kids will find it really hard when they grow up and realise that the would doesn't revolve around them. However, my friend is really happy with her family life, and her kids are lovely- it works for them, but it would suffocate me!

I just wanted to say that Ivan now qualifies for high rate mobility We were turned down a few months ago and I asked them to review their decision, I also wrote a very long and detailed letter explaining why Ivan needs more help than a 'typical' child. A couple of weeks ago I rang them because we still hadn't had a decision after 11 weeks, and they said they were waiting for a response from his consultant. Anyway it came through today- it's going to make getting around so much easier- I've got to try and get a passport type photo of him (not going to be easy!) for the blue badge application now. Oh, and Ivan used the toilet for a wee AND poo today for the first time!!!! (he's never even used his potty before, and never sat on it without a nappy before!)

I'm from Sheffield, provision here seems to be pretty good so far, though it's early days (my children are still young).

I would love some of these (badges) for my Ivan, but I'm sure he would object to wearing one as he finds new clothes very upsetting- I bought him one of those Thomas tank engine zip pulls and he refused to wear it (despite trying on and off for several months). Those window stickers ( Emergency Alert, Occupant With Autism May not respond) are a really good idea- I will definately get a few. Great link, cheers

My son invented a super hero called 'Rescue Man' when he was about 4. Charlie (now nearly 7) talked in incredible detail about how he lived in a power station, the food he liked, clothes etc. I noticed a few months ago that Charlie hardly mentioned him anymore- then we were looking at a space book where it showed a picture of a shooting star, and Charlie told me it was a picture of Rescue Man dying

Ivan has to have zips done up right to the top, also if I'm wearing a zip-up top/jacket it has to be done right up, including pockets! I had to hide all his winter coats recently during the really hot weather and then I start wondering if I'm being cruel by depriving him of the choice of clothes he'd like to wear.

The fact that they're so vulnerable to bullying It affects them in different ways- Ivan is oblivious to anyone's malicious intentions (rough play, teasing etc), but he's so happy-go-lucky- he just goes back for more. Charlie, I have always felt is so vulnerable because he is so easily moved to tears- this makes him a target because his reaction is so extreme, for very little effort He has become so aware- it is really getting noticible how anxious he gets in social situations).

Yes, I realise that introducing this topic as a bit of light refief was not really appropriate, some examples are really sad. Ivan is still quite young (and small) so a lot of his 'behaviour' is attributed to him being at the 'terrible twos' stage, though this won't happen for much longer, and then I will probably find out how cruel people can be (whether intentionally or not ) I suppose it really is a question of ignorance, where people don't even realise (usually) that they are even referring to a disabled person, so are completely unaware of the effect of their words etc

A bit of light relief- I'm sure we all get comments when were out and about with our special children - sometimes I'm really cross at the time, but on re-telling the story I can see the funny side. Other times I let it wash over me, oblivious to the fact that I'll be thinking 'how dare she say that about my child!' a few hours down the line. Two spring to mind I was seriously struggling to get Ivan round Tesco, first I made the awful mistake of throwing his half-eaten cheese dipper away- I'd offered it to him several times with no interest - but now he's protesting loudly and trying to get into the bin. Then a lady with balloons comes over to try and cheer him up- as you can imagine that went down badly . I struggle round the shop with the usual thrashing and screaming and all the time keep my cool. Then Ivan refused to leave the shop and walk the 20 yards or so to the car. I wait patiently for about 10 minutes- I can't carry him and the shopping, I can't take the shopping to the car in case he runs out after me (yes, I know I should've used a trolley). I can't leave the shopping and take Ivan, because that sends him into even more of a frenzy- by now I'm starting to get agitated. Then a shop assistant comes over and says (in a broad Yorkshire accent) 'so they've not cured him yet' I could've swung for her! but was too stressed and upset at this point to say anything Another time Ivan was enjoying 'swimming' on the floor in Morrisons (he lays down and slides along the smooth floor- on every isle we visit). This is not a problem if it's not too busy (it wasn't busy), or if I'm not in a rush (I wasn't), so we were pretty relaxed about things. A daft old lady pretended to nearly run him over and said 'beep beep' - Ivan didn't react at all- I just slid him out of the way. All very relaxed- no problems at all. A couple of isles later we see the same daft old lady (she's only being friendly) who says ' I know what it's like my dear- I've just taken my dog to the vets' !!! I just smile and get on with it. Then I think later 'who the hell is she, comparing my lad to her dog - I know it was harmless enough- sometimes I read too much into things. feel free to add more.......

Hi it was me who mentioned my concerns about AS to his teacher after she had brought a few issues up. The senco then wrote to our GP who has referred Charlie to both CAHMS and the unit where my other son was diagnosed. In fact yesterday I got the letter saying that Charlie will have his assessment sometime in September, also got a questionairre to fill in about him. Things are moving forward as Ivan got his statement yesterday as well . It looks like I'm going to have to have my head screwed on for this meeting, but I can't think of anyone to take along with me (practicalities of picking up Charlie from school, waiting in for Ivan's minibus etc). Thanks for the replies

My son Charlie has always been on the silly/ daft side , and babyish speech has featured a lot in the last couple of years- even before he started is current school. He is particularly unhappy at school at the moment, as he feels he is not treated fairly by both teachers and other children. There is one boy who he has really bonded with, but their frienship seems to consist of being really daft, talking gibberish and rolling about on the floor together- the staff are fed up with it to the extent that Charlie is being moved to a different class next year (he doesn't know this yet - I'm dreading telling him ). He is in a predominantely Muslim school where a lot of the children speak English as a second language- his friend is a Muslim boy, so I'm aware of the possibility that Charlie may have picked up some Urdu or other language, but it still seems like gibberish to me. I think Charlie uses this babyish speech as a way of avoiding real issues- he was lost in thought on the way to school this morning and when I asked him what he was thinking about, he replied ' gujababa' (which he has prevously told me means someone with no hair ). I'm not sure if this is a characteristic of AS. In the last week or so this has got much more frequent, also I've noticed he's flapping his hands a lot, and I've not noticed this before, so it seems he is feeling particularly stressed at the moment. His teacher has suggested that I attend a meeting with the senco and herself sometime in the next couple of weeks, which I'm all for, as I just want him to be happy, and if we can work out any ways of helping him then that'll be great. I have got some information from the NAS on stratigies to help motivate him with his work, as he has very little work to show considering his intelligence. However, I don't hold out much hope, as the senco thinks that we shouldn't use any AS specific stratigies until he gets a diagnosis. Apparently he is not 'disruptive enough' and there are other children with behavioural problems who take priority. I also feel that his school work is, on so many levels, too easy for him (it took him all of 40 seconds to do his homework the other night) but when I've mentioned this to his teacher (who acknowledges that he's very intelligent), her reply is that his actual output needs to improve before he gets set harder work. He shows the characteristic lack of imagination and flexible thinking which means that when it comes to drawing children playing in the park, he needs to be shown how to draw a slide and gets extremely tearful in the classroom, as he thinks he can't do it. Then he gets called a cry baby by the other children . Another case is writing a diary where he just copied the example sentences the teacher had given them- his teacher either interperates this as him not making enough effort or that the work is too hard. His school social life is non extstant, as so many of the children go to mosque, and the one's who don't, Charlie doesn't get on with (despite my efforts with inviting children round to play). He is very aware of this, as at his old school he had lots of friends he saw outside of school. We have had so many tears about how he want to leave that school but doesn't want to lose his friend (the one who he's being split up from next year ). I really don't know what to do next and would appreciate any advice about what I should be asking for at this meeting. Part of me just wants to whip him out of that school and back to his old school (which would be a pain, as it's a drive across the city, and probably not an option anyway). It's just that I can see he's trying so hard to cope and I just want to help him sorry for the long post!

I couldn't read the whole thread as it was so long and left me feeling very upset and angry. Just try to take comfort in the fact that if this guy goes out of his way to avoid poeple with disabilities then hopefully he will never cross paths with us

Charlie saw our next- door neighbour walking along the street in her colourful hippy clothes and said, very loudly ' what's that lady doing out in her pyjamas?'

I've just finished reading 'the little class with the big personality' by Fran Hunnisett who writes describing her experiences teaching a class of autistic children at a special school. She describes teaching each of the seven children in separate chapters, some of her descriptions made me laugh and cry all at the same time. I only hope that Ivan is lucky enough to be taught by someone with half as much compassion and respect for the children as her. It is easy to read, not too long- I only got it yesterday! A very warm, positive book- has anyone else read it yet?

Hi noogsy, I haven't really got any advice but I just wanted to say how disgusted I am with the way the school have treated your son You must be so upset and angry (and your son too). I hope things get better for you soon- this site is a great source of information and support. Keep us informed of what's happening, and best of luck

Jo, I use one of those hip seats which you wear like a belt (it's called hippychick), it's good for carrying him fairly short distances-it gives him a sense of security too. I hardly carry Ivan without one these days because I've hurt my back so many times. It really takes the strain off my arm and my wrist too. He's getting too big for his pushchair so I'm thinking about getting a major buggy- mainly from the safety point of view. I've been told by Ivan's OT that we may be able have one on loan as they're very pricey- I'll have to chase it up.

I have a pile of forms to get through and at the top is my reapplication for DLA mobility for my 3 1/2 year old. I had been finding it increasingly difficult out and about with him, when my social worker said I should apply, and that she would help me. Unfortunately she is off sick indefinately so is unable to help (she was helping me with a lot of other things as well). I don't want to ask for another social worker as mine really seems to understand our needs. I think I should reapply, focussing on behavioural issues (though he does have other physical problems) which I skimmed over in my application last summer, but I don't know if I'm wasting my time and energy. All this has got me thinking that maybe rather than applying for benefits, maybe I should be focussing on the behaviours which are causing the problem and trying to work on them. One example- if we are waking along the street he will hold my hand UNTIL we try to cross a road and then he pulls away- I end up carrying him (kicking and screaming usually) or putting him back in the pushchair. He has no concept of danger so how would I teach him not to do this? Obviously there is a balance between accepting him for who he is (which I do), and changing behaviours (only the downright dangerous things- there is so much I wouldn't change at all) which will make life easier in the long run. I'm confused to say the least I seem to lurch from one point of the day to the next without thinking how I could improve things. so any advice/ input would be appreciated.

My son has nearly finished a course of music therapy (he gets 10 half hour sessions) which he is now enjoying- he found it difficult to begin with and screamed through the whole of the first session. It's hard to say what he has got out of it but it has been nice to spend the time with him doing something different. The sessions consist of going into a room where there is nothing but the instruments spread on the floor and the therapist. It's very unstructured- the therapist sings a 'hello' and 'goodbye' song and we mostly follow Ivan's lead to get him to engage with us-banging drums shaking shakers etc. We haven't had to pay for sessions as they are provided as part of the excellent support he gets from his playgroup (for asd kids).

My son's obsessions change but currently they are- Thunderbirds space, planets etc numbers (especially counting down from 5. like thunderbirds) jigsaw puzzles(separate thunderbirds puzzles to always be done in the same order- you guessed it 5,4,3,2,1 and then lady penelope's car!) The numbers obsession was a big problem as his brother's school playground has them painted all over, and it was a nightmare getting past them, both going into and coming out of school. Leaving the house 5 minutes earlier helped , as it gave him more time to indulge and therefore the whole process became less traumatic (you see, I was the mum with the screaming kid EVERY day, twice a day - all becaues he wanted to look at (and me to say) numbers).

Hi, I thought it was about time I introduced myself as I visit these boards a lot but have not yet posted. I have a 3 1/2 year old son who was diagnosed ASD in the summer- he currently goes to a special playgroup 3 mornings a week where he is making good progress with PECS and visual timetables, he really enjoys it there. It gives me a break and a chance to drink tea with other parents at the same stage as us. My older son (6) is starting to concern me (possible AS?) but then I am a natural born worrier and haven't done anything about it yet. Anyway, it's a busy time of morning (school run- always a nightmare) so I'd better go. I'll be back later! Harriet