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About kay74

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  1. Hi, Im after help and advice please, I have twin girls who are 12 and recently started their periods, within 2 weeks of each other. They are both on the more severe end of the spectrum, and one has very little speech and functions at about age 5/6. I thought we were handling the periods really well, much better than I expected but this time round she has started pooing herself instead of going to the toilet. I'm guessing it is maybe because she is wearing a pad she thinks it's a nappy (although she stopped wearing them about 5 years ago). has anyone else heard of this problem? Also, has anyone with girls on the spectrum decided to go ahead and put them on the mini pill? I have read about it as an option if they are not coping, but my gp is not interested in helping, there is no school nurse (budget cuts) and I really don't know where to turn. Thankyou in advance **Moderator note have moved this topic to the 'beyond adolescence' section** trekster
  2. kay74


    Have been a member for a number of years now, but am returning after along time away from the forum. Have 11 year old twin girls with asd, and looking to reconnect with parents going through similar things on their journey.
  3. Hi, was wondering if anyone has been approved for a DFG grant for a wetroom for their ASD child? OT has said we don't fit the criteria as its not a physical disability or a safety issue. I have twin girls with ASD and learning disabilities who we are trying to teach self care skills to become as independent if possible, they are 11 now and we have the joy of puberty to come! OT says as they can get in the bath (albeit not unaided) and sit on a seat under the shower ( although they cant wash themselves like that) we don't qualify. Any suggestions/opinions appreciated
  4. Hi, just wondering if there is anyone out there in the North Fife or Dundee area of Scotland??? My husband is in the RAF and we are likley to be posted up there later this year. As i have twins with non verbal autism and severe global development delay, anyone with any info on the area, schools, social etc and any tips or do's and dont's that might help me before we embark on this would be greatly appreciated. Cheers Kay
  5. Hi, I have twin girls who are both autisitc. One is dx moderate and the other severe. They are both non verbal but one is beginning to vocalise alot and that includes 'singing' nursery rhymes. She only has limited recognised words but certainly tries to 'sing' the whole song and belevies that she is. She cannot make alot of the sounds you need to talk which is her biggest problem, sounds like p , b , t ,m, f so she thinks she saying something but to me and everyone else its unrecognisable as a word. But she is very tuneful with her 'babble' inbetween the odd words she does sing. I hear her humming to herself at night too, which is so cute and its taken 6 years to get here! This has been quite a recent development though and her twin sister still shows no interest in songs or nursery rhymes or talking but they both do like muscial instruments and making lots of noise. They were very similar at one point but now 1 has leapt ahead with her development. But i too find it very interesting as to wether songs have anything to do with how severe thie language difficulties are and actually what does affect how severe their problems are. I guesss my twins show that every child is different - even identical twins - cos mine are certainly not identical anymore when it comes to development.
  6. For my girls it has been Dora the Explorer since they were about 2 (they are 5 1/2 now!) Thank god there are some new episodes starting next week on Nick Jr - I think I know every single episode off by heart ! Lol . They can spot Dora on anything a mile away. Yasmin also is into books, any book, brochure, magazine or anything she can turn the pages of over and over (she cant actually read though)
  7. Hi Thanks for your help and suggestions. Sorry I didnt make it very clear both my girls (Twins) do get middle rate DLA but I was applying for mobility too, in the hope i would get at least low rate, and hopefully get a blue badge. Although they can walk, they are very unpredictable and dangerous, go in different directions (or not at all) and have no road sense whatsoever. I thought i had worded the application well and explained everything but obviosuly didnt use the words they were looking for. I even had them look at it again but they just said all 5 year olds have to hold their parents hand around busy roads! Maybe they should try going out and about with both my girls and a baby on your own at the same time! But I know they look at children individually and dont take into account the fact I have 2 special needs children, a baby and only 2 hands!!!! I will contact NAS and Contact a family thanks but dont think i can face going to appeal again as I know what it entails having just finished one for both their statements (Which we won but still hasn't been implimented by LA but thats another story!) You get sick of fighting for everything and it wears you down! Kay x
  8. Can I just ask if there are many people out there who have kids diagnosed with Autism (moderate-severe, non verbal, low muscle tone) who are getting DLA for them and at what rate? Also do any of you qualify for a blue badge either by getting the higher rate of mobility or having an understanding council? I have applied for both and been turned down. I appreciate every case is unique but have heard of people getting these things for autism and just wondered if I was being unfair in applying to receive them when i am fully aware there are other children out there who obviosuly need them. Thanks
  9. kay74

    You can do it!

    Hi, Haven't posted on here for a long time, but found it so useful and lots of people really helpful when we were going to tribunal for our twin girls. They are non verbal and to cut a long story short we were not happy with the amount of speech and language therapy received in their statements from the LEA and ended up going all the way to tribunal over just that point, annoyingly probably costing the LEA more in their solicitor costs than it would of to give us the therapy......... But they wouldn't meet us half way. 7 months and alot of hard work later we did actually win!!!!! It is alot of work and very stressful but my girls are proof it can be done so stick with it!
  10. kay74

    Tribunal - Help!!!

    Thanks for your suggestions. Im getting so down on this whole tribunal thing now. I go to bed thinking about it, dream about it and wake up and its still hanging over me! Its hard enough day to day looking after them never mind having to think about finding the time to write a case statement and getting eveidence together. Im on the verge of giving up but I know thats what the LEA want me to do! My SALT is prepared to be a witness but that and reports is costing enough - cant afford any legal representation which I know your not supposed to need but feel I do. I wasn't appealing part 2 but again think I probably should be, there are issues there with occ therapy, but I dont even have a report to back me up as its not even mentioned in statement as they wern't asked for input. My girls cant jump or ride a bike or use a knife and fork yet the paed said there were no mobility issues so no need for occ input. They are seen periodically at school and they work with them.
  11. kay74

    Tribunal - Help!!!

    Thanks for that info - will look into it all, dont think i qualify for legal aid though. My SLT suggested 1 hour a week on a specified intensive programme with the SLT, followed up by work every day with the classroom asst, but their school SLT disagrees, and even goes so far as to say they are not ready to talk!!! Kay
  12. Hi, I am new to this forum - having been recomended by a friend) I have twin girls who are almost 5 and have been diagnosed with ASD. They are completley non verbal and so had no problem getting a statement, but now I have them Im not happy with part 3 s provision of speech and langauge therapy. They will be going into a ASD unit attatched to a primary school which is fine but will only get an hour with a SLT per term and then a programme delivered by classroom assts. This is what they have had in a specialist nursery school for the last 2 years, and there hasn't been alot of progress with regards to actual speech. I dont think this is anywhere near enough and so we are going to tribunal. Problem is I cant find any other similar cases, or anyone with sufficient expereince to help me. Ipsea can only help over the phone due to resources and parent partnership is great but hasn't done a tribunal before! Please can anyone help me as to what my case statement should look like??? Can anyone send me a copy? Anyone out there with a similar case - and won??? Or any tips? Have got a private SLT report but cant afford anything more - this is driving me insane!!! Thanks Kay Mum to twins Yasmin and Caitlin (almost 5) Non verbal ASD and possibly dyspraxia and Camryn (1)
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