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About kirstie

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    Mt Blanc
  • Birthday 06/03/1973

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    mum to four, 3 dx with aspergers,one with dyslexia and epilepsy.
  1. My son was on it for epilepsy, he became quite aggressive and moody on it so dose was lowered. Weight gain and acne another side affect! :-(
  2. Hi All, not been around in a really long time, life is, as i'm sure you can imagine hectic to say the least. I now have three children dx with Aspergers and all that goes with it! I was just wondering as the title says if anyone knows if i am entitled to cold weather payments even though i am on child tax credits working tax credits my kids receive a disability premium and one is under 5. Noone at the jobcentre seem to know and Inland Rev even less help. Just wondering if anyone has had these payments? Seems to me if your not on income support your stuffed for any kind of support (for want of a better word) ,any advice really appreciated i have been passed from pillar to post this avo and patience is wearing thin.....bah humbug!
  3. Thank you for the replies, i do appreciate it. My little girl is quite similar in that she is a bit more passive and insular than her brothers but she does have this horrendous temper, where i get hit ans scratched, she goes a very fetching shade of red !! she loves to collect things, like if we're in the garden it's my pegs, or little stones/chips, or pencils. she tends to hold them all in her hand at once or move them from one place to the next and sometimes back again! she can be slightly repetetive, her fave saying at the moment is "I love pink!" it's sweet up to a point she has a half smile too, it's like she can't do a full cheesy grin.....she is also obsessed completely with this little doll too to the point she gets very upset and anxious if she can't have it. Anyway, the reason for all the questions is because although she was dx at 17 months i moved house, saw a new paed who said she wasn't so sure she was even on the spectrum (as she had made such great progress) but i said "No, i think you're wrong. It may be slight but there's something i know it!" and she seemed so sure that it's likely she isn't but now she's done a 360 and saying she thinks it's likely Eilidh will follow in her brothers footsteps....it bugged me because it was actually a very stressful few months thinking oh here we go, i'm going to have to take this on and fight. No-one actually wants to go through the whole diagnostic process once never mind twice or more. But as i said Paed is now saying she doesn't want to do an ADOS. so in my mind it's quite clear that the 'professionals' think my daughter may have AS..... I don't care,whatever they do or don't have they're all amazing to me! i just find it all so interesting. I will be looking up this book about Girls and Aspergers though! xx
  4. Hi all, not been around in a long time. My 10 y.o son with Aspergers is doing great and my second son who is four (had a dx at 2.5) has had the Aspergers diagnosis rubber stamped just recently, my daughter is now 2.5 (dx at 17 months) and her language has what they call 'recovered' and she is becoming less insular as time goes on. The paed thinks it's likely she will follow in her brothers footsteps and i tend to agree but just wanted some advice on how girls present differently to boys (with AS) . When she was younger she was very detached and self contained that i was so worried that she'd never react to us or show any kind of emotion.she was still and quiet and never let us know when she was hungry (now she doesn't seem to know when she's full!) she has a lot of sensory difficulties Bath, hair washing loud noises having her feet leave the ground. In short she is a bit more passive than the boys but WOW does she have a temper!!!!! her smile is a half smile,iykwim?? and she parallel plays but really shows very little intrest in her peers or siblings. Thankfully she is making great strides but any info from parents/carers of girls with Aspergers would be appreciated!! Thanks!
  5. Hi Karen, Thanks for your reply. I spoke to her consultant today and she is referring her to Neuro specialist. He deals mostly with children with Cerebral palsy but he also has a lot to do with neuro-muscular disorders and she was quick to reassure me she doesn't think Eilidh has CP but what she did say was that when she saw her and dx her she was very anxious about her leg and foot position- not a word you hear a Dr say too much (if you're lucky!) she said it was almost equinovarus (or something like that) position (her foot) but no brisk reflexes and normal xrays everyone is baffled, or maybe not.......it's almost as if her brain doesn't know what to do with her left leg, it's kind of dissassociated from the rest of her body. \i have no idea what any of this means alongside the uneven thigh folds and one side being more pronounced than the other (the left side ironically!!) but i'm worried. I hope the wait to see the Dr's isn't too long!!! Thanks again for your reply!!
  6. Hi all, Just wondering if any of you ahve been through the same? My little girl dx recently with autism is not weight bearing on the left side atall, she's not walking yet either but she is globally delayed anyway. We ahve had piedro boots fitted and their making no difference whatsoever, granted she can't get her foot into the position of using the dorsal part of her foot but she just won't weight bear on that left side atall, she had normal hip xrays and all reflexes are ok- none brisk. Achilles are slightly tight but nothing major, she objects if you try to place the foot in the correct position but then she is tactile defensive and objects whever you try to assist her physically be it with paint or touchy feely toys, not sure what is going on and physio is totally stumped, she has no idea why she is doing this atall, (i did ask if anything was coming to mind!) she did ask however if she is seeing a neuro or will she be? Well, her consultant is Neuro but specialises in autism spectrum disorders. Jusr a bit worried and wondered if anyone had any ideas? A standing frame is the next thing if the boots don't work!!
  7. As ther title suggests we are moving house within the next week to a new authority. We're not far from the city centre of Edinburgh but it seems there is sweet FA for children with additional support needs. Only 1 visiting teacher and even at that she doesn't do what we have been getting, an hour a week portage if you like. I am quite shocked and worried because all my kids supports are set up and now it will all have to change. My boys will remain at nursery and school in Edinburgh so their support will continue with a request for some funding for their learning assistants from the new authority, but if they decline to pay some or all then there's not much can be done because we are there already as are the LA's. The one that worries me the most is my daughter, she isn't at nursery as she's only 19 months old and all her services will have to be transferred, meaning a HUGE wait for physio OT SALT etc that we are already getting. Can i insist she stays with the therapists she is already involved with? Also there is NO respite provision. The social work have bought 3 nights and that is for very severly disabled children. Ok so my 3 aren't severe but they all have dx of ASD's so surely there should be something. At the moment Lewis gets 1 day a month at a kidzone club and Aiden would ahve 2 when a space came up but now there will be no visiting teacher for the 2 younger ones and no respite. What is going on????? we ahve spent (and still spending) in excess of 90 million on flaming trams in the city centre, and yet kids like mine are going without. Makes me furious. It just feels like an organisational nightmare trying to set up supports again where basically there's none. I just kind of (as well as crying) felt pleased that she was dx so young because i thought the earlier the intervention the better, and she is more affected than the boys but it feels she will be let down by an outdated system. Help anyone????
  8. The toe walking has caused extremely bad problems for my 3 year old. His achilles are so tight he needs piedro boots and physio. He can't jump and is only just about running. there are seperate motor planning issues there too but i would get things checked out with a physio asap.
  9. Urgh we have huge eating issues here, my son with aspergers is dreadfully fussy about his food and eats no fruit or veg- basically nothing that is healthy for him atall. My 3 year old (dx Autism) eats very well, completely the opposite will eat anything atall but he is constant, he has 4 slices of toast for breakfast and straight after is asking for his lunch!! he really would eat and eat if i let him, i am of the opinion however that he has an intolerance to something (dairy, lactose???) because after going off milk completely about 3 months ago he went from chronic constipation to severe diorreah and even sickness. He is also very bloated and i think he has a growly rumbley tummy which he equates eith hunger so he wants food all the time.He does drink a bit of milk at snack time at nursery but i am convinced it is something to dow ith that. We are going to ahve him tested by Sunderland Uni Autism team. Eilidh, my daughter is 18 months and dx with autism and she has NEVER let me know when she's hungry. She would quite happily go without all day if i let her (which of course i don't!!) but even then when i think she MUST be starving hungry she will have a few mouthfuls and then refuse anymore, very small amounts, not losing weight and seems to be ok according to HV but it does concern me. The other thing is i have read that kids witgh ASD sometimes do not realise when they are full up (or in my daughters case the reverse could be true too) and will just keep eating, not sure if this is a sensory issue. Is there an OT you can discuss this with? Just wanted to let you know you're not alone!!!
  10. And to you too Cariad, not easy for you either! <'>
  11. First of all hi, and welcome to the forum, I am not a single parent now but i have been and i understand how difficult it is, i really do! What i would like to say is that i do have a son with AS who is very difficult with his eating habits- it worries me greatly as he becomes very phobic and will have physical symptoms i.e migraines witht he worry of what will be in his lunch box. Somehow though he is thriving. You must be in turmoil. My daughter is 17 months old and has autism she is really awful with feeding, she has never told me she is hungry and will only take a few mouthfuls at a time constantly refusing or gagging so iam keeping a very close eye on her- not sure if it's a sensory thing at the moment but it does worry me! Not much in the way of advice but just wanted to let you know i understand! take care. kirstie.
  12. Holland is where we are and i guess that's where we're staying....i love tulips!!!! Thank you for that it really is like that!! xxxxxxxx <'> ><
  13. I have added my daughter too, but she has Autism not AS. I already have 1 son with AS and another with Autism. I had been so confident when she was born that everything would be ok this time- how niave can you get?????????
  14. My heart goes out to you hun! What a complete waste of time SS are. And actually double how dare they to say they have to see if they can "allow" kai to be with his grandparents, i'd be telling THEM I am the only one who can say if it's allowed or not, don't think they have any right to say such a thing when they are more than failing him themselves. I hope you can get him the resi placement you want, i am thinking of you. <'> >< <'>
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