Mum of 3

<'> So glad he had a great time. Hope the improvement turns out to be a lasting one!

Thankyou, Salbaggio, for that wonderful, eloquent post. <'> I feel just like you in many ways, searching for an answer to the eternal difficulty of helping my DS to just enjoy his life. He's 5, and we're at about the same stage of the assessment process as you. It's a minefield, and each family's journey is undertaken without a map! We're all here to gain from other's experiences, and some answers will strike a chord, some won't. The important thing is that there are people on this forum with some 'real' answers, and some 'real ' understanding, rather than the usual 'I'd soon sort him out if he was mine' sort of thing. Sorry to go . You can get back to discussing writing now. By the way, G won't write unless cajoled, bribed, or ootherwise coerced, and even then, it's all over the place (and he can only write his first name!!!), so I'm looking forward to to tackling this one in another year's time

When I was at school I had a pencil case full of smelly rubbers, felt-tips, pencils, etc.... My favourite was a triangular pencil with a 'grape' scent. Thanks for the memory!

That's a really good idea, Kazzen. I'll ask the dr. Thanks.

Thankyou all for your replies. We're definately going ahead with the test, so we have to do it somehow. Yup, this is the kid I've got! He's already had the cream for a minor operation he had when he got a bead stuck in his ear (don't ask!), but, as you said, just putting the cream on was a major trauma! When they had to insert the needle and the anaesthetic, the play workers were brilliant, and the anaesthetist stood behind him with the gas mask just in case! He faught like a cat, but we managed reasonably calmly. I think I'd better ring the hospital and ask for the 'full monty' with play workers, etc. Mumble, thanks for all your advice (sorry, not clever enough to quote your's and Baddad's!) I think playing it down is definately the way to go, and just hope for the best. Although, I'm not sure that I can tell him 'we need some blood' without him freaking out! i just can't think of a nice way to put it! Knowing that he might be afraid of other's reactions to his reaction is useful, and it might help to have some sort of social story about getting nervous about hospitals, etc... Thanks, all. <'>

crook

Hi, the paediatritian has asked that G has a blood test to test for Fragile X syndrome. The problem is, he is really scared of any sort of medical procedure. In fact, he won't let any one do anything to him without a huge battle- brushing his hair, cleaning his teeth, etc are daily difficulties. Anything like the dentist or injections involve me having to physically hold him down . He's getting bigger and stronger, and I'm feeling more and more reluctant to 'overpower' him in this way, as it isn't helping to make the next time any easier-he just adds being held down to the bad feelings and memories! Also, even though it's for his own good, it feels bad to do this. In addition, he doesn't listen to 'reason', so Social Stories, etc, are not 'taken in'. I'm sure that many of you will have found similar with your own children, or feel the same way yourselves, so I have 2 questions, really. Firstly, to anyone who feels like this, What exactly is the fear, and what could I say/do to help lessen that fear? Secondly, to other parents, how have you handled this sort of situation, and what tips do you have? Thanks, all. Edited to add: G is 5 and a half.

Sooze, my mum has G for a 'stopover' once a week and it's a Godsend. I rarely miss him, and we all look forward to the break. I love my DH, but on past experience I'll be really pleased to wave bye-bye when he goes back to work after the Bank Hol! Don't feel bad at all. You're 'on call' 24/7, and deserve a bit of peace and quiet. <'> <'> <'> . As for what your FIL said, if he feels like that, perhaps he would like to increase the number of visits so DS goes more than once a year?...Now, where was that lovely Spa you've been reading about.....

I kow what you mean, Mumble. It's always made me laugh to see on forms where they say 'do you consider yourself to have a disability?' If it's only based on my own consideration, then, yes, I'm 'disabled' because I'm not a millionaire! Or, I'm 'disabled' because I can't run a marathon! I've always thought that a disability was something you can't cure, or grow out of, or (for want of a better phrase) 'get better' from, and an illness is something you get, and then it can go. I think from the examples you've given that the Benefits people probably have a different understanding of this (as they seem to about so much!). Maybe it's to do with the length of time you've had the condition?

I am in total agreement with you, Paula. I have been reading this thread with interest...One of my best friends was approached to take part in this programme when she was pregnant and found that her baby would be born with Spina Bifida and Hydrocephalis. The family would have had to be filmed throughout the pregnancy, birth, the first life-saving operation to close the hole in her spine just after birth, etc, etc....Understandably, she turned down the opportunity, but we discuss this programme avidly , and we are both grateful to those who were courageous enough to take part and share with the World the reality of life with a disabled child. As for Shelbie's Mum, I have another dear friend whose first child was born apparantly normal. She first suspected things were not right when he was about 4 months old. After a long round of tests and appointments, she was told that he had such severe disabilities (which, for the 'diagnosis' debators, are still undiagnosed and therefore un-named!!), that he probably wouldn't survive past his first birthday. She has lived ever since with the constant 'threat' of his imminent death. He cannot communicate, we don't know if he can hear or see. She had to fight tooth and nail to even have him accepted into the SLD school he now attends-she was told there was no point in sending him to school-it was a waste of money! In order to preserve his 'quality of life', she regularly nurses him through pneumonia, which is the thing the doctors think will finally kill him, and his regular epileptic fits. As Baddad said, who are we to judge the quality of his life. He is well looked after, has a loving family around him and has only ever known gent.lleness and love. She feeds him every meal, carries him up and downstairs, into bed, into the bath...He is now 9 years old, and has recently learnt to sit unaided. She has gone on to have 4 more children, none of whom are disabled. In her darker moments (she doesn't have many!), she has said that if her son does die, she wants as many other children around her as she can get, to lesson the pain. Who are any of us to argue with that, or refuse her that right. As far as I'm concerned, Shelbie's Mum should have as many of her beautiful babies as she has the space in her heart for. <'> <'> <'> <'> <'>

Do you know what, SG, it sounds to me like each person you've dealt with thinks that by referring you on to other people, each person you've seen thinks they've dealt with the problem. If I were you, I'd write down everything that's happened, with dates, and go back to the GP with this. Explain how you feel you've fallen between two different departments, and that you're not getting anywhere. Also, if you can, tell him how upsetting this is for you, and how frustrated you are. Your GP has a duty to care for your entire wellbeing, so he should respond to this. If you feel he is still just referring you on, and not bothering about how long that will take, or what happens next, then you could say something like...'So, I'll make another appointment to see you in a week, just to let you know everythings moving allong as it should be,'...that way, he knows you're not going to just fade away, and you know that you'll be keeping on top of chasing up the appointments. If you feel your GP is really not sympathetic, is there another GP you could go to in the practice? In our surgery, there are 5 or 6 different GPs, and you can make an appt with any of them. Sometimes, I'll see the first one free, for a simple thing like an infection, but if it's ongoing, I always go back to the same one. I found the one I liuked the best, and always see him for anything important. We've built up a really good relationship, and I don't have to keep going over my family history every time! <'> Good Luck!

G does this too! Non-uniform days are dreadful-he just can't understand why anyone would want to NOT wear the lovely uniform! He also refuses to wear new shoes unless I introduce them as something really special (Baseball boots were 'spaceman boots', he's had 'Pirate boots', 'Fungus The Bogey Man boots'...). Last year, he wore boots all summer because he refused point blank to wear any type of 'summery' shoe or sandal. He spent almost the whole of his third year in wellies. Oh, and he won't wear short sleeves under a long sleeved jumper or coat...(unless it's his beloved 'nooniform', which is a polo shirt and jumper, but no problems)....the transition from jeans to shorts in summer is negotiated like a United Nations Peace Keeping Mission!...Wore a fleece all winter when he was 3, refused a coat, and when he grew out of the fleece, rejected every alternative I bought because they weren't the right combo of hood, fur, pocket, etc...I exhausted the supplies of every charity shop this side of the M62!!! Luckily, I have 2 more to pass all his cast-offs down to, and I've learnt to not bother when he wears just a t-shirt in the snow!

The whole of my DH's family is anti-social, either argumentative (the women), or silent and taciturn (the men). They have always come across as just rude and ill-mannered. My DH, on the other hand, just comes across as shy, as his silence is coupled with a self-effacing nature that endeers him to people (brings out their 'mothering' instinct?). He still has poor social skills, though, and is completely flummoxed when people in shops/restaurants walk off without responding to his requests (he speaks so quietly, and makes no eye contact, so they are unaware he has spoken!). He finds it really hard to understand other people's emotions, and is very poor at relating what happens in one situation to what happens in another, almost identical situation.....i could go on, you get the picture. Before the doctor started to mention As regarding my son, I knew little about it. Once I started reading about it, Everyone had it ! Including ALL DH's family!!! Now, I've relaxed a bit, and have gone back to thinking they're probably just rude and ...well..I have to say it...From 'down South', so what can you expect (Ducks for cover) I've always looked to DH's family for the 'genetic' link, but now my DS is being put in for a test for Fragile X, and that is only passed to boys through the mother!!! Oh dear, Time for some humble pie, methinks

Sorry, but this really bugs me. There shouldn't be a possibility that his PE kit has 'got lost' or 'been hidden'...by himself or anyone else. The school should be well-organised enough that stuff that is in the 'wrong place' is immediately returned to the 'right place'! It always astonishes me how something like a bag of pe kit can just 'go missing' in a school... Have they no cleaners? Do they not notice when there are things 'out of place' in the building? Is the place in such chaos that they have 'stuff' piled up in corners? I am amazed at the mess that some schools are in, and the filthy environments some of our children are spending 6.5 hours a day in! I would forget Aspergers when you talk to the Head, talk about the difficulties of teaching organisational skills when the school doesn't lead by example...

G can go for hours with his joke (just the one for him )... Why did the chicken cross the road?... Because he was a chicken!!! When I do one of my (ridiculously hilarious, of course) jokes, like ... (drum roll)... How can you tell if an elephant's been in your fridge?...Footprints in the butter!!! He says 'but an elephant wouldn't fit in our fridge, mummy, it would be too big!' and 'But an elephant wouldn't be able to put a footprint in the butter, Mummy, he'd probably just squash it!'... er... His latest game for car journeys is that everyone has to tell a joke in turn. It's getting V. tedious, so I'm collecting all your examples.. keep them coming!

My 'Dearest Mother' has just been given a book an AS by a friend (wouldn't read any of the HUNDREDS I've offered! ). Guess what? She's 'only dipped in and out of it', but she's decided she's now an expert on AS, so yesterday, when he'd been to the dentist (10 minutes spent pinning him down in the chair, tried all 'nice' ways to get him to open up, eventually had to force my fingers in and bear the bites!!! ), and he was begging for something new, she went and bought him a massive Postman Pat playset for 10 quid...For being 'GOOD'!!!...even though we've had an absolute ban on 'extras' for weeks because his beggin and tantrums in shops were getting out of control... and the other 2 got NOTHING... they never do! (she can't afford to buy 3 toys, she says! ). When I asked why the **** she'd bought him such a big thing she said she'd read in this book that his desire for new things wasn't just a 'want', it's a 'real, physical NEED'. Don't know what book she's reading, but haven't come across that as part of the DX criteria myself!

Skye, you've posted before about problems in your DD's school. Is it possible thats it's the school in particular, and not 'mainstream' schools in general that is the problem? Is it possible to have a look around at some other primary schools nearby and find one that might suit your DD's needs better? Schools can be very fixed in their ideas and attitudes, particularly if the staff have been there for quite a long time (which is often the case in small village schools). Unfortunately, this area is very keen on 'normality' and 'fitting in'. A school with a staff that has moved around a bit might have teachers who are more... shall we say adaptable.

Unfortunately, they aren't optional for the children, but the school. The school must assess the children at KS1 (Year2) using a range of measures, mainly Teacher Assessment but they will also use Govt published SATs tests to confirm/inform the teacher assessment. The results of these must be sent to the LA to be used in official reports. At the end of KS2 (in Year 6), the school must administer a range of tests under strict 'exam' conditions, during one week in May. There is a published timetable for these, so every Y6 child in England will be doing the same test at the same time, unless there are extenuating circumstances. These results are the ones that are published in 'league tables'. The Govt also produce a set of SATs style tests for years 3,4and 5, which can also be used to inform/confirm the Teacher Assessment. These are the 'optional' SATs, bacause it is optional for the school to use them. They can also use them when and how they choose. Many schools choose to administer these tests under similar conditions and at the same time as the Y6 SATs. This can get the children used to being tested in this way, and also ensures that the whole school is relatively quiet and calm, with an 'exams' atmosphere during Y6 SATs time. Actually, you may find that your DS is happier/calmer this week, as the timetable will be set out, and everyone is doing exactly the same thing in the classroom!

Sorry to go but I have to say my friend's little girl uses a wheelchair and she has to fight for inclusion all the time. For ages, they refused to let her attend after-school club because it's in a portacabin, and although that has a slope up to it, the slope is too steep for them to push her up it (!). My friend fought , got the LA involved, who told school they had to accommodate her...and now her DD has after school club in the PE store room . My friend has to accompany her DD on all the trips, even though there is a full time 1-1. She even had to go on the residential trip from school, and, when Brownies went camping, she had to spend her Saturday night sleeping on a pile of newspapers in a Scout hut! What fun!!! Our current battle is over the new playground equipment, which my friend, who is on the PTFA, has spent 3 years fundraising for. It was installed just before Easter and all the children were really excited. There is not ONE thing that is accessible, not even one of those static boards that you trace your finger round. Nothing. So, my friend has now begun fundraising for 'Phase 2', where they will include accessible things! I'm afraid I couldn't be so patient, seeing my daughter come home from school in tears of frustration, screeming that she wants to be able-bodied. This little girl was also excluded from the other girl's parties, after-school teas, etc. My friend made friends with one or two mothers, and invited their girls, making it clear why she was doing it. This honest approach is paying off, although she still hasn't been asked to sleepover (only at my house with my 3 hyper boys! . Back on topic, I attended a birthday party with G over Easter. He really didn't want to go, I made him, and stayed with him. He spent the whole time on my knee, hiding his face and wimpering. One boy came up to talk to him, but G wouldn't talk back. The rest just ignored him. A couple of the gossips, I mean Mums , came to ask 'What's wrong with Gabriel? He's always like this isn't he? Has he got something wrong with him?'. I decided I had to be very honest with them, and try to appeal to their better nature (!), so I told them that he finds social situations very stresssful, he has difficulties making friends and playing with other children, but that he wants to be able to, and that we have to give him lots of understanding and support from home. Last week, my mum was dropping him off at school and saw a little girl giving out invites. G didn't get one, and the little girl confidently informed everyone in earshot that 'I'm not inviting G, there's no point because he doesn't like parties anyway.' And so it begins...

It could be something as simple as someone telling him he looked nice in blue...or maybe he thinks blue is 'lucky'. It might just be that it's his favourite colour. My DH (who mainly sticks to only wearing blue! ) suggests: 'Does it match his eyes?' (blue matches his!)...'If everything's similar, you don't have to make any desicions about what you're putting on in the morning!'

shoe

tense

I've seen this in lots of children I've taught, some of whom have 'grown out of it', and others have had to have extra support in the classroom due to other needs as well. One girl I taught wrote back -to -front and upside-down as well! It is worth talking to his teacher and finding out if he does this alot, as he may need to be assessed, as you say, for dyslexia. You didn't say which of your boys it is, but if it's the 5yo, I shouldn't worry at all, just give him more writing practice, maybe. If it's your 8yo, then you need to be looking at his other writing, and see if he does this alot, or if it's just a momentary lack of concentration.

reply

Don't know much about this sort of thing, but reading down your list, it sounds as tthough your DS is worried about hygene. Is it possible that he's worried about touching the toilet seat to lift it up to wee, and has come up with another arrangement to solve that worry? I don't know what the solution is, other than showing him very clearly how the toilet is cleaned and reassuring him that this is done regularly. Maybe he's worried about splashing when he wees, so is reluctant to use the toilet for this reason? If so, he could be encouraged to wee sitting down on the toilet. Is his bedroom far away from the bathroom, so he gets so engrosed in his ps, games that by the time he realises it's time to go, he doesn't have time to do it. If so, maybe an alarm could be set to ring/vibrate to remind him to use the toilet every 2 hours or so. My DS also wipes his fingers all over his trousers. He would rather eat with his fingers than cutlery, but doesn't like mucky fingers, and won't lick them clean, even though he'll eat hummous and yoghurt with them!! I give him a lovely, clean fabric napkin every meal and insist he uses it. This is easier with little ones, as I eat with the children, but maybe your DS could be given a clean men's hankerchief every day to keep in his pocket and wipe his hands on? Sorry if these are all things you've already thought of.