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dekra

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Everything posted by dekra

  1. Yep, very surprised too by the 5 years but as I say I am not knocking it - I can concentrate now on what he can do rather than what he can't do so much. There are no plans at present for children to be moved to PIP and even if the adult change over goes well and they extend it to children I doubt it would happen until at least the 5 year award is up so I feel able to relax in that respect. The PIP changeover must be worrying for adults currently on DLA.
  2. Thanks for the second link SpT. I'd read the first before but never seen the second and it was helpful to know the cut offs. I already know my son didn't score highly enough but I am going to request on Monday that they let me know exactly what the scores were. Not sure if he didn't score highly in all areas or if it was just one area that they are dismissing. I am still sure my son is on the spectrum but what can I do when he's getting the support he needs anyway and the health professionals are telling me no.
  3. dekra

    IEP

    No Sally, no statement we are in Scotland we don't have Statements here. We are lucky that we don't need dx's or a statement for things to be put in place here, as long as you have an efficient MDT which seems to be the case so far. His 4 afternoons a week are delivered in a small group by a specialist SALT and a SN teacher, they also have a TA 2 of the 4 days. (2 days there are 6 children, 2 days have 4 children). The group sessions are not only for building language skills although that is their primary function they are also there to aid social skills and do a lot of turn taking and sharing practice.
  4. dekra

    IEP

    Hi everyone, We have Finn's first review meeting since starting school in a fortnight and I am happy (mostly) with how he is settling in and his support. He continues to attend his special speech therapy group 4 afternoons a week. Given that there is no official IEP (Individualised Educational Programme) in place and his needs appear to be bring met without it do think it is worth me pursuing it getting one at the moment? Also does anyone have any suggestions what I should be asking about regarding ongoing support etc when I am at the review meeting?
  5. Thanks Justine, I daren't get my hopes up over that but even a reduction in his nighttime distress if nothing else would be wonderful.
  6. Yep, High Rate Care as he has daytime and night time needs and Low Rate Mobility as he's perfectly capable of walking just needs a lot of supervision/has no sense of danger/no stranger danger.
  7. Was a good post for Finn. Also recieved a hospital appointment to see the sleep consultant!!
  8. Finn's DLA renewal was only sent off last Tuesday 18th and was received on 19th by DLA office. Yesterday we received the letter confirming reciept and today I came home to the decison letter. My first thought was oh god they've not even had time to read it must be a rejection. I opened it to discover Finn has continued to be awarded HRC and now he is 5 they have added LRM to the award. The award has been made for 5 years which is what I am shocked at mostly. I really didn't expect anything more than 2 years. The LRM was only awarded from the date they received the form and although Finn turned 5 a few weeks before hand and I had wanted them to award from then but as I hadn't said it specifically in the form they didn't do that. I am NOT going to ask them to amend this as I know this would trigger a full reconsideration and I'm not rocking the boat!! It is such a relief to know that I don't have to worry about filling those awful forms in again for a considerable time. Thanks once again to everyone that gave me advice on both the renewal and the inital claim and reconsideration a year ago.
  9. Being alone can be my best friend and my worst enemy at the same time. Now that I am married and have children I find the lack of alone time very very physically and emotionally draining at times.
  10. With ASD's it can be frustrating. LD services are officially for those with an IQ lower than 70. However there are so many situations where the arbitrary cut off just doesn't address needs. Some services are more flexible than others and as previously mentioned the way funding is at the moment then the extraineous services are the ones to be cut first. It doesn't make it right or fair unfortunately because even with a high IQ ASD can be very disabling. It is just yet another time when the condition and it's various manefestations doesn't fit societies perception of what a disability should be.
  11. So sorry that your penny pinching LA is at it again Sally. As if it is not hard enough having a disabled child with complex needs but to have to fight for everything you and your son are legally entitled must just be such an emotional and physical drain.
  12. I was in Tesco this afternoon with Finn, just the 2 of us and at the check out he wanted lifted up. The person in front of us was talking their time and I agreed to pick him up even though it's not something I do often now he is 5! So I picked him up and he gave me a huge cuddle and said "I love you" there might have been a Mummy at the start or the end of the sentence I'm not sure but I was absolutely stunned. He has never expressed spontaneous emotion like that! He has said Love you before but only in reply to one of us having said it first and rarely with any feeling in it. This seemed real for the first time ever and it was so special. I won't be forgetting this in a hurry!
  13. Justine, have you tried the family fund to help with your driving lessons? My cousin has a daughter with a disability and has to go to the regional childrens hospital 3 or 4 times a year and they agreed to pay her through a fair amount of hours (certainly enough to get the job done IMO) plus 2 attempts at both theory and practical tests. Admittedly my cousins daughter does have a physical disability (she can walk perfectly fine but doing it for any distance beyond home causes a lot of pain and injury so she is entitled to HRM from DLA but still if you have a lot of Dr's appts for the boys (if you do apply you can only apply per family not per disabled child) but let them know about both boy's having a dx and how driving would help them and the family and there is a good chance you could get it.
  14. Hiya Justine, Thanks for the reply. The jacket is just one example of what we call his negative loops, another is when getting him dressed (at 5 he still needs a lot of assistance to dress) I try to promote his independence but we get into a lot of loops where he wont do what I've asked so I try to do it then he wants to do it himself so I stop tell him to do it then he wants me to do it. Very frustrating for me and getting angry at him only makes it worse. I have to build time into the morning routine to allow for me walking away to break the cycle and going back and getting on with the routine. Similar things happen with food too plus other things I can't think of at the moment. We are coping and learning how to put strategies into place that whilst they don't remove the problems they limit the effect on the family. We do have to make major adjustments as I'm sure everyone else with children with similar difficulties does but different has just become normal now. As for choices I am trying to limit them especially if I don't have a lot of time but I sometimes forget and I don't want to take all decision away from him. I have just started 2nd year of my course this week Enjoying the more advanced lectures so far, yes it's harder but it's much more interesting so I am hoping that will be the same for the rest of the year. It's scary though, I am not on placement again until January but I am going to be expected to know things. How's the little un? Must be getting big now.
  15. As a parent I agree, in fact at the moment for social aspects it's myself and my husband that find it harder than our 5 yr old son as he is blissfully unware he is different. Obviously the meltdowns and night terrors etc do directly affect him and he suffers but socially he is thankfully oblivious. Years ago when smileyk' mum had that experience it must have been heartwrenching for her as there is little to be done to help kids - you can't force them to play without causing more distress etc and your mum will have been confused as there was so little public knowledge about ASD or anything that causes social difficulties then.
  16. HI sorry you've had this experience but YOU were a teacher with AS for 11 years even though it was undiagnosed. The diagnosis did not change who you were all of a sudden. If you were good enough to teach all that time you are good enough to continue to teach with a diagnosis. So either they have been very unfair and sacked you for no good reason or they wanted to sack you for something else and used your diagnosis as an excuse - also very stupid as if there was an issue with your teaching it should have been addressed for it's own merit. Hope you find the information you need to help you win your tribunal. Also even if (and I don't for a moment believe it) that there are no other teachers at all anywhere with AS that is still no a good enough excuse to get rid of you.
  17. dekra

    ESA

    *cynical reply warning* Not likely Jeanne, not having a pulse seems to be the only criteria that gets you deemed unfit for work these days. Except for the ones that have been on it for years for ingrown toenails etc.
  18. Hi Jeanne, I am sorry Glen has had such a awful time recently both at home with your and at the care home and the experience with the police. What occurs to me is that the detached retina happened prior to the home visit and subsequent problems at the care home that required the police attendance. The detatched retina could well have caused sensory distress to him and been the cause of the distress and meltdown rather than the meltdowns and subsequent hiting himself causing the detatched retina. So difficult to know what's cause and what is effect but wishing him a speedy recovery from his surgery.
  19. Hi guys, I've had a pretty hectic few months since I last posted so thought I'd give a little update on our situation if anyone is interested and if no-one is then the post is always still here for me as always to be able to review later to reflect on how things may or may not have changed and my own changing level of coping with it all. We've had some positive improvements in language use with Finn, he is now making basic sentences quite regularly although he does still have a lot of learned phrases and echolalia. I can at least see an improvement - he has developed in the last 6 months and although he's not really caught up on his peers he is not any further behind them. He has also started school and although we were concerned about how he would cope he's settled in quite well. He does only got 1 full day and 4 mornings per week as he still goes to the specialist language unit 4 afternoons per week. We had his first parents evening last week and were told that although there have been minor behavioural issues this has mainly stemmed from his realising that in some ways he gets special treatment and liking it so wanting more in all situations not just the ones he needs extra support. His classmates and infact the other children within the school are quite protective of him I am told and certainly when I drop him at school in the morning there is usually at least 1 child not from his class shouts hello to him (although he just puts his head down and does not reply when I am there). Because he has to leave class early for lunch before his taxi arrives for his language unit the kids in the class all like to say bye before he goes. On a positive note his school shoes were all scuffed on the toes after only a week so I take that as a positive sign that he must be out playing with the other kids at least some of the time. Am I the first mum ever to be pleased at an expensive pair of school shoes being scuffed? As expected the teacher told us he was advanced with his Maths skills but when discussing his sounds the teacher said he knew 4 out of 14 - which we thought must be poor but the teacher told us some of the other kids only know 1 or 2. We were very happy at that. The teacher with the aid of SALT have visual timetables for him and I feel they are supporting him well. Some of the problems noted have been things like choosing dinner, he seems to always want a sandwich (I don't think he actually wants one he just tends to go for the option he's asked most recently) and for example last week he was asked what he wanted on it - cue him being echolalic - he was asked if he liked Tuna (he doesn't) and he said yes (he obviously didn't understand the question, I know this but they didn't) then wouldn't eat his lunch. They were planning to send the weeks menu home with him (something that should have happened anyway but hasn't) so I could mark what he does like and return it (6 days later no menu has appeared as yet, must remember to chase the office tomorrow. We've also been told he's the most polite boy in his class by far - with his difficulties it's been hard as parents to teach him things but at least we've succeeded in teaching him manners Although we are only 4 weeks into the school term I have had a phonecall twice to go pick Finn up from school, once at 10.35am because he had fallen asleep in class at 9.10am and once because he was very very tired. Both times he's been either coming down with or recoving from a mild illness but he was no more tired than he can be frequently due to is poor sleeping patterns. I find this slightly frustrating as if they send him home everytime he is tired then I will spend half my life trotting up to collect him. At home we've had worsening of his negative spirals, he seems to get caught in a loop eg "Do you want to wear the red jacket or the black jacket? "Red jacket" we get the red jacket on "no the black jacket" so get the black on and he wants the red. It's more complicated than it sounds - it sounds like he's purely being naughty but there is a very real distress in the confusion and loop he gets into. Another thing is meltdowns, he's had minor meltdowns in the past but he's recently taken to absolute full scale meltdown. My husband has him in the shopping centre a couple of weeks ago and he was grumpy because he wasn't allowed on the escalators as hubby also had our 2 year old daughter in the buggy so he was a bit worked up after being refused a go on these but soon after he kept talking about 10p and saying something was lost. Hubby was confused as Finn hadn't had 10p and hadn't lost anything. Things got so out of hand that he had to manually pick him up (whilst struggling with buggy too) and get him to the car. This was a fullfledged kicking, screaming, hitting rage. Hubby got him into the car and seat belt on and full for 10 minutes Finn was still thrashing around thumping window etc. I telephoned about 10 mins after he calmed down, they were still in the car as hubby didn't feel it was safe yet to drive off and I spoke to Finn and he sounded like he was talking a foreign language, was over an hour later before he was talking in his normal limited fashion. I finally posted off DLA renewal forms yesterday. His renewal is very soon (12th October) but I've been chasing report from his March assessment and ADOS in early May since late May but only managed to get them a week and a half ago and only got the copies of the most recent schedule of growing skills scores last Thursday. So since then I've been going back over the claim info and updating it to ensure it was accurate and up to date. The paper claim form I filled in mostly was filled with "see extra info" and I put all that on to a word document that I printed and added into the claim envelope. The extra info pages had a word count of over 8300 words and I provided them with 7 different reports from various sources. So now the worry begins that I am once again going to find the decision maker doesn't read the forms and dismisses the renewal claim the same way the inital claim was. Looking at it from as an unbiased opinion as possible given that I am actually very very biased I do feel he still rates HRC as he does still have extensive needs both daytime and night time plus now he has turned 5 then he should be entitled to LRM as he still has no concept of stranger danger or awareness of danger in anyway and his unpredictability when out (after the recent meltdown in the shopping centre he needs one to one care when out and about for sure). As always we shall wait and see what they decide and be prepared to appeal. So both good and bad things recently but in general I feel a lot more positive than I have for a longtime. I am hoping I can post an update again in a few months or a year and once again see progress.
  20. I agree that you should talk to your keyworker. Get it confirmed exactly the boundaries you are entitled to. If there is a reason for the intrusions that is valid and appropriate for your situation is there anyway things can be re-arranged to minimise both disruption and upset to you. I do think many people in the care profession are there just because a job is a job and have no notion of actually wanting to help and support service users. On the otherhand I have also met some wonderful care workers that do care and genuinely want to work WITH their clients for the best results. I hope at least some of those that work with you are second kind.
  21. This is where I am lucky I guess, here in Scotland getting a definitive dx is not necessary for them to put support in place based on assessed need. At the moment whilst I do still have reservations about ASD I am content with the DX as it stands at the moment and I will wait to see if TOM develops. For me this will be the next significant aquirement or lack that will decide me if I raise the ASD question again. On the plus side we are getting basic independently formed sentences beginning in the last few weeks, so he is still keeping just ahead of his sister, I am going to be devastated I think when (as seems inevitable) she catches and surpasses him lingistically.
  22. I got the DLA renewal forms in Feb as it was 6 months prior to Finn turning 5 and the letter said it was if I wanted to claim low rate mobility. I was waiting until the diagnostic process was complete and all reports were in. I then got ANOTHER set of renewal forms in March as it was then 6 months until the end of his award but again I was waiting. On Friday I got yet ANOTHER set of renewal papers (slightly updated form and I must say much better) and a reminder to get it in so they have time to process it. So 4.30pm on Friday I set to work on it even though I am still waiting on some paperwork confirming all that was discussed at assessments last month to arrive. I was at it until 1.30am. So that was 4.30pm-8pm constantly, I stopped for an hour and was working and watching tv then from 9pm-12am I was doing it in the background whilst I was working (I work from home) and from Midnight to 1.30am it was again my main focus. Husband cooked, sorted kids etc. Last night I spent about 1 hour on it and I still have 4 sections to go. I took other peoples advice and used a word document to add extra info and numbered each section as per the form. As things stand with 4 sections (including social aspects and communication which are not going to be short) to go I have just under 6400 words typed. Once again it is so depressing cataloguing all of his difficulties and the problems that face both him and us all as a family on a day to day basis. On a positive note whilst we were awarded last time with no diagnosis and only the health visitor (who was next to useless) as a professional contact this time we have a list of about 11 professionals Drs (paeds and paed psys), SALTS, OT's, Edu Psy & a Special Needs teacher that all have been involved in assessing and/or supporting him and we also have the dual dx of Language Disorder and Developmental Delay so we can say yes there IS a problems, this is what it is, this is how it affects him and why. So on paper I think renewal should be ok however there has been an improvement in his toiletting (due to a very structured routine being inplemented) so they may refuse day time care needs due to this as when they did the award initially the day time aspect was based on his incontinence at that time. I feel there is so much more care beyond toiletting but it's making them see that. Hopefully I will get someone that has some common sense (would be wonderful if I had the lady that did the reconsideration the second time and realised his night time needs warrented HRC when we hadn't even asked for it). I also hope that we get a longer award this time - again the second reconsideration last time increased the rate but reduced the time which I think was fair but just hope that we don't get another 15 month award which means I am applying again in 9 more months.
  23. My son has just had his ADOS last week and he also was not diagnosed based on the test results - I have been told they understand the reasoning behind us believing he had ASD as a lot of the signs of his language disorder and developmental delay are mimicing ASD but they do not feel ASD is the dx. They have said LD is still a serious issue and is just not as publicised as ASD and they are taking it seriously. If they are not dx-ing ASD for your son they may hope that there is an element of something similar that whatever is causing the traits that seem like ASD is being caused by something else which may improve or resolve. Other than that I can't think of an explanation because TBH to me it's hugely confusing being told it's like autism but it's not autism.
  24. dekra

    ADOS today

    I am happy enough that they gave the test we which we wanted. I'd have been happy to accept a dx from the test so I need to accept the lack of dx too. But yes I think they are blaming the language disorder for everything when it may still be ASD and they have said they want to review him at 6 monthly intervals for the next year to see what's happening then discuss further in a year. So yes I will ask them to re-assess in a couple of years if I still consider his social interaction and social imagination skills to be seriously lacking. On the surface they seem to have an answer for all our concerns that they can blame on the language skills (he can't pretend the wooden cylinder is a plane due to language??). To them it all ties together and makes sense. The things that don't tie in with the language disorder are tied in with the developmental delay. There is no point at the moment in disargeeing with them as I they do take his problems seriously and at the end of the day the name they give it is just a name the important thing is for him to get the appropriate support and there is a commitment to that with all concerned.
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