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Emum

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Everything posted by Emum

  1. To clarify, you would (or should) get them for a much older child with night-time incontinence, but I suspect around 8 is the qualifying age for this. The reason is that you can only get them once your child reaches the age when a non-disabled child would not need them, and there are more 8 year olds with no disabilities around who still wet at night than you might think, just parents tend not to talk about it! So from 3 or 4 (depending on your area) you should get them if child needs them day and night; and from about 8 on you should get them even if child only needs them at night. hth
  2. The Child Development Centre will probably have them when you see them. In our area, you can get them post-3 for a child with a diagnosed disability who wears them day and night. You can't get them for a child only in night-time nappies, and I am fairly sure you won't get them if the child does not have a diagnosis of something (not necessarily asd) but is just slow to toilet train. If you speak to your local incontinence service they will be able to tell you what the qualifiers are in your area, and may also be able to tell you how to access the service if you do qualify and don't want to go through your health visitor.
  3. Only if they have a psychic mother! The incubation period for measles is 7-14 days. Therefore the child could easily be at nursery and highly infectious for several days before any symptoms are obvious. Being too old to have been given the MMR, and having been exposed to measles inadvertently during this pregnancy (and to chicken pox by a mother who knew her child was infectious and didn't tell), I'm less than impressed by those who put more vulnerable children and babies at risk needlessly, and had anyone suggested to me that any harm to my unborn baby was down to my low orange consumption, they'd have got pretty short shrift.
  4. I'm still not sure that's conclusive proof. My DD met all her milestones early, and the HVs and my family used to laughingly call her "Little Einstein". She could feed herself with a fork and spoon when she was 10 months old, and her speech was bang on target at a year. She had her MMR at 13 months and continued to be a bright little spark, with no impact at all on her development, and suddenly shut down when she was around 18months, and now has a diagnosis of autism with severe learning difficulties. My understanding that a sudden regression and loss of previously well engrained skills is very very common with ASDs and it goes without saying that sometimes this will occur at around the same age as the MMR is given, but this does not prove a link. I was interested to read Karen A's posts as we live in the same London borough, and I am aware that we have a much higher incidence of children being diagnosed with ASDs than the national average (the last figures I saw were about 3% as opposed to about 1% nationwide). It is interesting then if we have a much lower take-up of MMR. From my own point of view, I would much rather have a child with autism than a child who has died from a wholly preventable disease, and I also feel a responsibity to those children with impaired immunities who can't have the vaccination but who would die or be seriously disabled if exposed to these conditions, along with those unborn children who might be exposed in the womb. For that reason, notwithstanding that I have a child on the spectrum, I do intend to give the MMR again to my new baby unless I am advised on medical grounds that I should not.
  5. I respect what you say Tom but autism is a spectrum as you know and you are clearly very able. I am talking about whether it is right to have a blanket view, based on the abilities and expressed views of those least severely affected, which denies the prospect of any relief to those most severely disabled. My DD is unable to communicate basic needs and wants to any but her nearest and dearest. She can't speak, has only a few signs, doesn't use PECs and can't read or write either. She is likely to be completely dependent on someone correctly guessing her needs and wants, and looking after her for the whole of her life. My husband and I were both 32 when she was born, so there will come a time when we are not alive to look after her, and what will her life be then? She can't tolerate unexpected noises - a police car going past the window sends her heart racing and her into a complete panic - nor can she cope with any changes to her routine - us going back to the house to pick up a forgotten object would be sufficient to have to abandon a whole day out as she would be so distraught. If I could "cure" all these things which would improve the quality of her life, and still leave behind the loving little girl who tries really hard to master new skills which most toddlers have got cracked, I'd do it. Autism is not the sum total of my DD, but for her it is the biggest struggle in her life. That might not be the case for everyone on the spectrum, but equally she is not alone in this. We don't say that curing childhood cancer/disfigurement/physical impairment is eugenics, or creating a "designer baby", and I myself cannot see why relieving some of the crippling effects of autism is in any way different.
  6. But aren't the anti-cure, anti-screening advocates making exactly that call too? I don't profess to be able to measure the quality of anyone's life, whether with an ASD or not, nor do I profess to be able to say whether someone should or shouldn't have been born. And speaking for myself I wouldn't terminate a pregnancy for ASD or Downs for that matter. But, would I refuse a "cure" for autism if it were offered for my daughter? Personally, I think I would not, because the way in which her autism affects my daughter is to cause her extreme anxiety, and severely inhibit her ability to lead a full life. So I wouldn't turn down a cure for that, any more than if she had a serious illness impacting on her quality of life. And if I were undergoing IVF treatment and had a choice of selecting which embryos to put back, I am afraid that I would screen, and choose to put back the ones who didn't carry the ASD gene or any chromosomal or other detectable disabilities or propensities to serious illness. I am sorry if that upsets anyone, but most parents don't start off their pregnancies with a wish to have a child who will face extra hardship and difficulty in their life. Speaking as someone who is currently pregnant, if my next child is born with ASD, or any other learning difficulty or disability, I will love them just as much as I love my two existing children, one ASD and one NT, and there is no question that they would be terminated or not accepted into our family as an equal family member, but whilst I planned this pregnancy in the full knowledge that another child could be disabled, it wasn't my hope or express intention that he or she would be. The only point my first post (and this one) was trying to make is that not all ASDs are equal, and that I personally feel that a blanket condemnation of a "cure" for autism or a wish to prevent all screening for ASDs, with the potential knock on effect of stifling further research into what causes the condition, is not helpful.
  7. I wouldn't be without my daughter and love her to bits, autism and all. However if you ask me would I like it if she didn't have the difficulties that she has, then my answer would be yes in a heartbeat! Is that the same as wanting a cure? I love her to bits, and have no problems with her personality, as she is a little star, but her life would undoubtedly be easier for her if she were able to talk and communicate easily, make herself and her needs understood to all, not be distressed and disorientated by everyday noises which are a little louder than she expects, able to cope easily with minor change in her life, etc, etc Who wouldn't want that for their child? I think when debates like this start, there is a tendency to think of high functioning people with ASD who are able to lead a measure of independent life, or who have found a way to cope with their difficulties. Not all those with ASD are so lucky however, and the statistics on depression and suicide amongst adults with ASD show that a lot of adults with ASD find their lives very hard to intolerable. Is it right therefore, because some people with ASDs and some parents of people with ASD are happy with the status quo, to say that no one should be able to access genetic screening, and that no work should be done to identify environmental triggers (if they in fact exist) so that these can be minimised?
  8. Easyjet keep changing their policy though and its really annoying. My parents live in N Ireland so we regularly fly backwards and forwards using them. They used to let all parents travelling with children preboard which was fine, then they changed it to only those travelling with children under the age of 2. IMO that is absurd as what parent would let a 3,4 or 5 year old sit apart from them whether or not they had a disability. It meant we always had to explain at check in that DD has special needs and could we preboard even though she was 7 and now 8. Sometimes they say yes, and sometimes no, and DD has very obvious learning difficulties which are obvious on even a cursory glance! The only way to be absolutely sure is to pay for speeding boarding, but that is hugely expensive. It already costs us about £750 as a family to make a 1 hour domestic flight and frankly I resent having to go to 4 figures just to make sure my disabled child doesn't have to sit beside a weirdo and not be looked after during the flight! What is interesting is that I find the check in staff in Belfast to be much more accomodating than the staff in Stansted for her special needs. I book my flights online btw (didn't know there was any other way) and there are only a very few reasons why you can request special assistance and a learning difficulty or autism didn't fall into any of the available categories last time I checked.
  9. My daughter has almost no speech (usually if she speaks at all she's on a 2-3 word level, per day!) but she loves to sing, and can sing lyrics fairly fluently. She will also sometimes sing songs which are very relevant to the situation so I believe she does understand the words. For example a few years ago we went to a french village which had been razed by the Nazis during WW2 and left untouched as a memorial ever since, and after we had all walked around in shocked silence for about an hour, she started to sing "Bob the builder can you fix it" Her current favourite song, which she must have learned at school is an old 80's hit. I can't remember the name but it goes "in the jungle, the mighty jungle, the lion sleeps tonight" and she sings most of the words of this very clearly and melodically. Which is weird as I've sung to her since she was a baby and if I ever hit a right note when I do it, it's by complete chance!
  10. I might be tempted to make this known at school, next time you hear any of the "big fuss about nothing" type put downs they are so good at handing out! Congratulations! Well done for perservering. ... and now you can afford that dog or what was the other thing you were considering for next year
  11. People who phone me on my mobile when I'm at home. Might sound pathetic, but I get rubbish reception in my house, and why use up my phone battery when there's a perfectly good landline there they could use! And cyclists who dress all in black and have no lights when they are cycling after dark!
  12. That is only the case if you will be alone with the children. If you are helping with a number of other adult volunteers and will not be left alone with the children, then CRB checks aren't needed. I would imagine this will be the case at the farm.
  13. It might be because they think he will find it more difficult than the other children in the class to go into a different environment, and that he will be happier if you are there, rather than that they feel they won't be able to cope without you. Do you not want to go, or are you just curious as to their motives? At my DS's school, parents of children with any form of medical or learning difficulty are always made very welcome on school trips of any kind, but if they can't come/don't want to come that is fine, and the child still goes on the trip without them. To the extent that the mother of a child with Cystic Fibrosis is going on the residential trip with her child this year, even though none of the other parents in that class are. I've also been asked many times to go on school trips with my very well behaved NT child, so it may well have absolutely nothing to do with Joe's special needs, and just that you are seen as a safe pair of extra hands.
  14. Emum

    Recipe thread

    Two nice fishy ones: Salmon en croute Chop up a fillet of salmon (uncooked) and mix this with a handful of spinach leaves into a small tub of creme fraiche (reserving one tablespoon). Season well. Spoon the mixture onto one side of a sheet of prepared puff pastry, fold over, and press the edges together. Mix the tbsp of creme fraiche with about 1tsp cold water and brush the mixture on top of pastry. Cut two slits to let air out. Bake at 220 for 20 mins or until pastry is golden brown. Prawn and Feta Bake Fry an onion in a little oil until translucent. Splosh with a little white wine and sprinkle with dried oregano. Add one can of tomatoes and simmer for 10mins. Add a packet of prawns. If cooked prawns, heat for 2-3 mins until heated through. If raw, simmer until prawns are pink. Crumble in half a pack of feta cheese and brown for 2-3 mins under a hot grill. Serve with a salad, fresh crusty bread and the remainder of the bottle of white wine!
  15. Carrots stand up quite well to long slow cooking, particularly if you cut them quite chunky, so next time you could put them in with the meat from the beginning, which makes them harder to nibble on while the casserole is cooking. The only vegetable which needs to be added towards the end of cooking time in my experience is mushrooms. If you cook them for too long they go a bit slimy and limp! How about irish stew if you fancy ringing the changes? You slice lamb fillet and fry to brown. Brown some onions and carrots too. Stick them all in a casserole dish and barely cover with chicken stock (from a cube or powder is fine). You can use lamb stock if you want but its not necessary. Season very well with salt and pepper. Slice your potatoes thinly on top and cook in a low oven for about an hour and a half. You can add other vegetables in as well (eg swede or turnip), or pearl barley to stretch out the meat but the Irish purist in me baulks at that!
  16. Hi Karen I'm fairly sure Stephen Hawking qualifies for DLA, and bright though I know Ben is..... Like everyone else has said, I'd appeal. I'd also try and get a look at the evidence the school and CAMHS put in, so that you can deal with that on appeal if you need to. I haven't done the appeal process personally, but if you need a second opinion on anything you want to submit, you know where I am.
  17. Oh crumbs! I said to use bio powder because you really don't need to use a lot of it! Sorry, should have been more specific, and I've only just checked back and seen your posts... I'm not sure how the liquitabs will have coped with being heated. Hopefully OK but I suspect you've used rather too much of the stuff, so will need to rinse your trays really really well to make sure they aren't tainted by the taste of soap. For future ref, for a baking tray or large saucepan, you need about a tablespoon of bio powder dissolved in warm water and heated to boiling, less for a smaller saucepan. Cheap as chips own brand bio powder works just as well, and I tend to have a small box of this in for random cleaning jobs which need the enzymes - eg cleaning up toileting accidents, pet things, spills of grease/protein based stuff on the carpet. It does need to be biological though, the non bio stuff and the eco stuff doesn't work for this.
  18. Your pic looks to me like you are using too much oil, and as others have said the thick acrid smoke will be because you are heating the oil too much. Olive oil isn't the best oil to use for cooking at very high temperatures, but it is much much better than other oils for just about everything else, so don't get rid of your stocks! I find lard to be best for roast potatoes, as you can heat it to a very high temperature and it doesn't burn. You just need a large tablespoon for a full tray of roasties. Alternatively you can use the fat which is coming off your joint as it cooks, and cook them around the joint, but this will make it more difficult to make gravy from the juices. To clean anything which is burnt on to saucepans, whether non-stick or not, the best thing to do is to dissolve some biological washing powder (for clothes) in hot water, then bring it gently to the boil in the pan. For a roasting pan you could do this by putting it in a hot oven. Then leave the water and powder in the pan to cool. The enzymes in the powder break down the grease, and any burnt food and the residue can be wiped off easily with a cloth when they have soaked like this for at least half an hour. Sounds a bit odd, but I guarantee it works!
  19. This site is very good for traditional baking recipes http://www.be-ro.com/f_insp.htm
  20. No, I'm not making it up! This is the headline in today's Daily Mail to accompany a very one sided article, not even written by a parent of a child with autism. http://www.dailymail.co.uk/femail/article-...ecks-life-.html I can honestly say that whilst life has its complications, and my life bears quite a few similarities to the life of the woman featured in that article, in that I too had to give up a good career, and have a child with very challenging behaviour and severe learning difficulties, I have never felt this sentiment for a moment!
  21. No, what is wrong about the forum at the moment is that people who would benefit and appreciate the support it once offered are being deterred from using it. I started a similar thread a few months back, and there were a fair few posters who expressed similar concerns to Nellie's. My thread harked back to the days when Nellie was a mod and an active member when the forum really was a very different world. For what its worth, I rarely post these days, so my level of discomfort is not based on people disagreeing with me! I just don't like the pack mentality which comes out from time to time, and the abuse which gets heaped on the mods for trying to keep some degree of civilisation here. And to turn your question round, if those who are here just to spout their own agendas and behave badly to other posters, don't like others complaining about it, why don't they go somewhere where that kind of behaviour is appreciated, and leave the forum to those who visit it for support and information?
  22. I know 3 families who are doing the son-rise problem. None of their children are "cured". None of their children have made more progress than my dd, who isn't doing son-rise. All 3 families have spent a lot of money on the programme (many thousands of pounds) and turned their lives upside down. One of the requirements is that a room in the house is set aside solely as a playroom. It can't double as a bedroom or have any other use. One family I know, the ASD child and their sibling have to share a bedroom and the parents sleep on the floor of the living room, as they have only a small 2 bedroom home. Another family had to spend a huge amount adapting their house for the programme. There are so many hidden costs: the cost of the programme is only the tip of the iceberg. Once you have spent thousands on the first course, you need to do more courses, which cost as much, plus pay for their advisers to monitor your programme. You will almost certainly need for one parent to give up work. You need to advertise for volunteers and if you can't find volunteers, pay people to help you with the programme, plus the equipment for the playroom.
  23. Thank you both. Fortunately she seems to be a bit better today, even though I didn't succeed in getting any paracetamol into her, but the ideas are all good ones and I will remember them for future - particularly the antibiotic injection one.
  24. E has real problems with taking medicine of any kind. She's 7 now, and when she was younger we used to have to resort to putting it into juice or yoghurt to get her to take it, but now when she's ill she is very suspicious of anything like this, and will not touch anything when she is ill unless she sees us prepare it under her nose so she can see there's nothing in it. We also had to resort at one point (when she had a really bad infection having broken her jaw) to holding her down, squeezing her nose shut and squirting medicine to the back of her throat with a syringe. That was at least a 2 person job and very upsetting for everyone (most of all her). At the moment she's got this really nasty flu that's going round and has been running a temperature since last Wednesday and has a horrible cough which sounds really painful. I'd like to be able to give her some liquid paracetomol and some decongestant, but she's not having any of it. I've tried explaining to her that it will make her feel better, and giving her some control over the cup so she can choose when to take it, but so far she's refusing it. I feel it would be counter-productive to try and force it into her as we did with the anti-biotics for her jaw, but its hard to see her so poorly and not able to make her feel more comfortable. Although she has a little language, she wouldn't be able to explain to us why she hates it so much. To be fair I can probably guess as it smells and tastes very artificial, and as she's off her food already, why would she try something which is so off-putting. Does anyone have any tried and tested tips as to how to solve this one?
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