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dekra

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Everything posted by dekra

  1. I had it for a short period, can't really tell if it was effective as it make me burp the vilest burps on the planet so I went to dr and changed to amitriptaline which was fantastic.
  2. I also forgot another gross motor skill he doesn't have is the ability to hop on one foot.
  3. It's getting the walk-in shower cubicle removed and a bath put in that we need (Finn can't stand being washed, the best way to get him clean is just to put in bath and let him get on with enjoying it) and we keep his hair as short as possible to limit the distress of hair washing. We need the bath to go in for Finn, for the rest of us - myself I prefer a shower so would like the shower kept but I am flexible, hubby likes both and the baby hates both so it really is all about Finn. With the nice weather coming in it is also getting more urgent as warm weather and outdoor play means mucky kids!
  4. Hi Sally, The motor skills is based purely on the fact that for gross motor skills he can't yet walk down stairs with alternating feet although he can walk up them. For his fine motor skills (which are good in many ways) he cannot make good marks on paper with a pencil and colouring with pens or crayons which require less pressure all he does is backwards and forwards sscribbles he doesn't even do circular scribbles. Dyspraxia and disgraphia are certainly things on my mind but I want the main dx first without pushing for dx of the rest until the main issue is resolved, then the rest of them can be looked at and pushed for. we do not yet have the OT involved although the edu psy was going to arrange for one to see Finn regarding his refusal to shower (our new house does not have a bath and we are hoping the OT will be able to force the council housing dept to put one back in), hopefully that will be sooner rather than later as it's a long way (60 miles) to my mum's house to bath! For the echolalia I have a recent report from his language unit to say he is echolalic but yet when the Dr today was reading out what I thought was the same report he mentioned that that echolalic tendencies were improving. That's something I am going to ask about next week when I talk to today's speech therapist again. I don't need to have dx for statement as I am in Scotland and although we don't as yet have a CSP (similar to a statement as it's legally binding) I am happy that things are progressing to provide for his needs at the moment and that if his needs are not being met then a CSP will be done (the Scottish Government have a Every Child Matters policy which clearly outlines procedure for this and I have the right to demand one at any time if I don't feel they are meeting his needs). On the other hand I do think the dx will be helpful to put on paperwork to make it smoother so yes I will be pushing for the dx. We went in today prepared to push so when they said they would be able to give a dx based on the ADOS in the next month or 2 then we were happy. My next worry is what if the ADOS does not show he has ASD? Do I fight against a diagnostic criteria that I'd be happy to endorse if it gave me the result I wanted? I think both myself and the Dr's are working on the assumption that it probably WILL confirm either ASD or at least strong ASD traits, if it doesn't we will cross that bridge when it comes to it. Again some of the doubts to ASD were his affectionate nature and his desire to communicate - this might be a hang up the professionals in our area seem to have but I am sure the ADOS will address. Finn is due to start school in Aug just 2 weeks after he turns 5 and it is still pretty much agreed that delaying him a year would likely not produce much benefit, so I am more relaxed in my decision that this was the right thing to push for. Even the SALT's that are dismissive of ASD have confirmed speech disorder rather than delay so I also have little worries about the availability of long term support. It is good to hear your son is not only coping with his new schooling but seems to be thriving from what you are saying - makes the fight you had to get the services he needed worthwile. Finn does have strengths in ICT/Tech and also numeracy and the MDT have acknowledged this both as a talent but also as proof of restricted interests. My personal view is to play to these strengths, he may take longer (if ever?) write properly by hand but already he is able to type his own name (first name and surname) so I know if need be he can be taught to read and write via computer. So lots to think about today (and more reading to do on ADOS and about executive function as you mentioned) but I do feel very positive and feel there should be a dx soon.
  5. Finn had his initial assessment 7 months ago and today had his first review appointment. His language skills have come on slightly, in that he has a broader vocabulary and has more parroted sentences. He still can't put together his own sentences. His motor skills (both gross and fine) have not developed since his initial assessment. The team were more recepetive to autism now and although they still say that there are areas where he doesn't quite fit fully within an asd they feel he needs a formal ADOS assessment and are arranging this for hopefully next month or the following month at the latest. What they have said is that in years past he is exhibiting enough signs to have been given an asd dx but that nowadays they want to be sure before labelling a child for the rest of their life.
  6. Thanks, sorry I was expecting you guys to be psychic lol. Psychology refused to consider seeing me unless I present with a condition that can be treated!
  7. My husband suffers from OCD and he mentioned to his psychiatrist last week who agreed I should not have been refused out of hand. I have to contact him directly and he will see what can be done. Ironically except for a dc I don't want help or treatment from the NHS, I just need the dx to get support from uni.
  8. off topic I realise but has baby bump arrived yet Justine?
  9. It went ok Justine thanks The discussions were about getting Finn supported through the transition to P1. http://www.asd-forum.org.uk/forum/index.php?/topic/27837-derbyshire-language-scheme/ That thread has the details of everything discussed but at the moment I'm fairly happy with things, just waiting on next paeds appt to arrive which should be for late march.
  10. Hi Sally, Yes he does have some sensory issues although they are not as bad now as they were. Certain noises set him off and he often covers his ears. Hand dryers in a public toilet are a big problem but we've gotten around that by mainly using the disabled toilet where possible and if we can't do that then he will only go with his hands over his ears, leaving me to do all the "manual handling" required to get him on the loo. In general he loves the water - he really does miss his bath but doesn't like getting his head wet although when he was going to swimming lessons he was slowly getting better at that. We will be restarting swimming lessons shortly so hopefully we can make more progress in that respect again. As for getting engrossed in things yes he certainly does, although this is more focused on his tv and xbox now rather than more physical sensations so that might just be typical little boy behaviour! Onesensory issue I am worried about inflicting on him is taking him on a plane, we are booked for our first ever family holiday and I'm worried it's a huge mistake and am considering cancelling but at over £1000 it's a lot of money to just wash down the drain when there might not be a problem and I doubt insurance would cover in the circs.
  11. Hi Lyndalou,thanks for your reply. There sounds like a lot of similarities between our boys (although mine does NOT like singing especially if it's me or his dad lol). Finn will have turned 5 just before he starts school in Aug and I am against deffering him as I don't believe he will gain a lot by it and I feel he needs school, another year of nursery won't benefit him imo. Kazzen - I found that first link also which is where I found the keyword level scores too. I'm just confused on what the SALT meant when she was discussing scores that must go to at least 10. I will definately need to ask for clarification of that next week.
  12. Does anyone know much about the Derbyshire Language Scheme? I was talking to my sons SALT yesterday and she said although she hasn't yet formally completed the Derbyshire assessment for him yet he is sitting around 2-3 and he really ought to be about 10 before he starts school. However the little I can find out about it online it only seems to be scores 1 2 3 4 or 4+ so I am confused. During the meeting to discuss his needs prior to starting school a number of things were brought up which I think will strengthen the case for an ASD dx. Finn's language skills including the learnt phrases, echolalia and his inability to grasp basic social interaction were particularly noted by all concerned. No-one raised holding him back from sarting school until I myself mentioned it but I am still against it and the edu psy agrees it may well be pointless as we could easily be in the same position next year with little progress. Finn will be starting his language unit sessions the full 4 afternoons a week starting 1st March (he currently goes twice a week) and these sessions will continue when he starts school too so effectively he will only be in school part time. There are concerns he may find the school overwhelming. The building is only 5 years old and is built on an open plan basis. They do however have 1 closed room for teaching which was just built on to give extra space this year and the deputy head seems to think it would be appropriate to put Finn's class in this room. There are going to be a few more discussions next week. My husband and I will be observing a SALT session within nursery, then getting a tour of the primary school to see how we think Finn will cope with the physical/emotional aspects of the environment. Whilst on the tour I can get more information on TA provision and ask if they can arrange some sort of buddying scheme for playtime and lunchtime as otherwise I envision a very lonely isolated little boy on my hands. I know without someone to guide him he'd just wander off himself. Later in the day we will also be going along to the language unit to observe that session through the 2 way mirror. The educational psy and the hv are also getting in touch with OT to see if they can influence the council to put a bath in our house. When we accepted this house it was knowing that there was only a walk in shower and we'd not be allowed to change it. We thought that this would ok as although Finn does not like showers we thought he would adapt - he has not. He will not go near the shower at all after we forced him to shower a couple of times for a brief wash. He goes into fullscale melt down now at even the suggestion yet he stripped naked the moment his gran mentioned he could have a bath later when we arrived at her house a few days ago. Hopefully OT's imput will help change the councils mind and we can have a happier (and cleaner) child. So basically I am happy with educational services, everything seems to be moving along with support being in place or being organised. I will be taking a copy of the nursery report and the minutes from yesterdays meeting to the next paediatricians assessment next month and I think realistically that's pretty much it until we hear what the dr has to say.
  13. Prescat meeting today, I am nervous. Attending will be myself, the hv, SALT, edu psy, nursery key worker and deputy head from the primary school he is due to start - that I know of that is, there maybe more that I don't know about yet. The point of the meeting is to determine his readiness for school and the support he will require. Our area are good in that they don't require a dx to put provision in place so the dx saga doesn't come into todays discussion. What does worry me is them recommending deferring his entry to school. At the end of the day I get the final say but I worry if I go against advice and he doesn't cope then it will be my fault. I so truely believe however that with appropriate provision for support then school at 5 is the best path. I think the best thing I can do is go with an open mind but to be an advocate for my son and his needs and best interests and make sure the provision agreed to will meet his needs. Up here in Scotland we don't have a statement but the provision agreed will be in some form of legally binding agreement, I need more info on the ins and outs of that I think!
  14. Having Aspergers IS having an ASD. It's just a specific term for one common manefestation of ASD. However as ASD is a spectrum even those with AS or other high functioning may easily tick some boxes for an AS dx and some that point to them being elsewhere on the spectrum (but still ASD). My personal opinion is as long as they acknowledge there is an ASD whether it's AS or not and as long as they acknowledge the specific issues for the person (and in the case of a child, ensure appropriate support especially in school) then in my opinion the name they give the actual point on the spectrum for that person is immaterial.
  15. Just found out today that the first meeting with SALT/EduPsy/HV/Primary school rep/Nursery Teacher and ourselves is next Thursday. I knew nothing about it. When we moved home in December I let the council know so his transport for his language workshops could be amended and I assumed they would tell the actual language resource et al but it seems they didn't get the info and still had my old address. Luckily I now know in time and we can arrange time off uni/work to attend. This is not connected with a dx and is purely to look at his educational needs and development and to start to work towards a plan of action for support also the case for holding him back a year will be presented is they feel it is needed however that decision is down to myself and hubby.
  16. http://www.nofas-uk.org/ That is the link for NOFAS ETA - Ahhhh I see you have the FAS details already sorry. As for the facial distinctiveness, this is often only noticeable in babies and they can grow out of it quite young. So if it was only mildly presenting it may havegone before you even met her. Whatever the cause I hope you can get the help you and she needs.
  17. Sorry stupid auto correct, that should say foetal not feral.
  18. Sorry if I am repeating anything already said I am using my mobile so only skim read the replies. I agree with the person that mentioned feral alcohol syndrome. A lot of what you are saying fits with that. There is a FAS charity and I went to a training day with them for midwives, it was very interesting. When I get home I will post their details as I think they will be a good place to start. The woman who set the charity up also adopted a little girl who was affected and she recognises the support families need.
  19. Good old dissertation has bought you a little time I still think you need away from your mum's house. I don't think it's a healthy place for you to be physically or emotionally. You are obviously upset and frustrated at her and this is probably making things like the slips with the knife more likely to happen and hence cause you physical as well as emotional pain.
  20. Hi Mumble, You seem to be in a pretty tricky situation. I agree that you should not sign the CA allowance forms as I think it would put you at a disadvantage. You say you had issues getting supported housing but is there anyway you can find a different solution? I think the position you are in with your mother is situation you will not thrive in and the sooner you find an alternative the better. Maybe I am being cynical but I have visions of your mother playing the martyr with her friends and telling everyone just how much she has to do and how inconvenient it is having you with her when in fact as you say she is already saving a huge amount financially. As for the details of benefit for the council then yes they will need that info to process a council tax benefit claim BUT I do not believe you need to provide them to your mother to give to the council, I believe there should be a way you can provide the council with the required info without disclosing your details to your mother. Phone the council tax/benefit dept and ask them directly don't ask your mum to ask and don't just ask any old call centre lacky.
  21. I am certainly looking into private options but other than their bullheadedness about his dx I don't generally have an issue with the help SALT are providing. The school know that Finn is at a private nursery rather than the council ran one that is attached to the school and they are making a point of liasing with the nursery regarding introduction/induction sessions they have over the next few months so again I am pleased with the response I have had from them. With the SALT workshop he currently goes to2 afternoons a week which are likely to increase to 4 afternoons by school time he will only be in part time anyway. I am not concerned about his coping with the physical integration into school life - in that respect he does not have the usual ASD issues with routine, in fact he has always been quite easy-oosy regarding routine changes, although this may just manefest in different ways (eg, some changes can trigger an increase in his sleep distrubances).
  22. Glad things went well at the review meeting and hopehis transittion to "adult" and all the related issues is as easy as possible for you all.
  23. Finn will be 2 weeks past his 5th birthday if he starts on time but will be over 6 if he is held back. I don't have a problem with the support services in place so far and that will be going to be in place when school starts - I am in Scotland so there is not a statement but there is a legal doc that is set up and this will be done at a meeting with various members of the multidisciplinary team in May. My main concern is the seeming lackof knowledge of the depth of manefestations of ASD behaviour in the SALT team and this negatively influencing the drs during the diagnostic process. I have spoke to Scottish Autism however and various other people I know with experience of ASD in both children and adults and they all agree SALT are not showing great knowledge of ASD. I am however hoping that after talking to people I have the confidence in my argument to put to the paediatricians and they ought to be knowledgeable enough in ASD to listen.
  24. I registered my son for primary school last month and he is due to start in August. There has been discussion of holding him back a year but that decision will be made closer to the time with his dad and I having final say. I am against doing it unless I can see firm proof he will benefit from it. I believe he should start school with his peers and be given additional support to aid his adaption to school life. I am however not ruling it out completely and will review the situation in the summer. In the meanwhile I have been in discussion with the deputy headmaster of his school. He says from what I have told him about Finn's issues they will apply for additional support hours to the council and hopefully be awarded time for additional staffing. His class already has their primary teacher plus a fully trained nursery nurse in primary one to aid the transition of all the children. Combine that with his attending his language workshops for 2 afternoons per week (possibly increasing to the maximum of 4 next year) then I hope there is enough support in place for him. He says there are 4 stages for support for children with 4 being the stage where children need a special school placement, He thinks from the sound of things Finn will be regarded as stage 3. so hopefully it won't be too difficult for them to be awarded staff hours for additional support. He returns to the paediatrican next month for a follow up assessment to see how he has developed in the 6/7 months since his assessment in Aug last year. He will have been at the language workshop for some time and they will have a lot of imput in the reports. I am concerned however as they constantly try to reassure me they do not believe Finn is autistic but their arguements infact make me more convinced. Firstly they say he wants to communicate he's just unable to do so well because of his speech disorder. My argument to this is whilst the speech disorder in itself does not automatically mean ASD it also does not mean his wanting to communucate means he isn't. At the end of the day he is unable to communicate effectively. Secondly they have been into his nursery and when the staff there mentioned that somedays he is very very affectionate with both staff and other children the SALT says that also means he is not ASD. I'm sorry but he's overly affectionate at times, the other children find it very distressing when he is in that mood. I would say therefore instead of a them saying he doesn't lack the ability to convey affection so isn't ASD, I see it that he is unable to convey this in an appropriate manner, similar to a small toddler. Over the last few months whilst Finn's speech is coming on very well it is still exceedingly behind in both his vocalisation and comprehension however he does talk a lot - to anyone. He will tell anyone you talk to his name, checkout operators and store staff you ask a question of are frequently bombarded with his constant giving his name which as it's very fast and not clear they either ignore or don't understand. He gets very frustrated and distressed when they don't repeat his name back to him. Yesterday he did this to the lady sitting on the bench in the shopping centre next to them when they stopped for icecream and then gave her a huge hug. He has no comprehension this is not appropriate and doesn't understand if you try to explain to him. We have now settled into our new home and his sleep pattern has improved in some ways and gotten worse in other ways. He does not have as many incidences of waking upset (our new neighbours are nice and quiet so I'd say the incidences of this have halved). That does still leave a lot of waking mind you. Other nights we are getting more and more instances of his not sleeping at all until 4 or 5am. He goes to bed at 8pm if not earlier but will lie awake for hours. When I am getting him out of bed at 6.15 so I can start at hospital at 7.30 this is torture for the poor soul. I have had to adjust my shifts in the short term but in the longer term I may have to leave uni for a while. He's been sleeping a lot at nursery but this can't go on as he will not be able to sleep daytime when he starts school. The exaustion he's been suffering has been extreme, when I am out with the kids now my daughter is in her buggy but Finn will stop and just lie down in the middle of a shop and refuse to move. We had the wee one out her buggy a few weeks ago and turned around and in the space of 2 mins flat Finn has climbed in the buggy and gone to sleep. I hate letting him sleep during the day however as when he wakes he is so distressed and seems to be taking more and more panic attacks. I just don't know what the best thing to do for him is. I am hoping the routine of fulltime school will help his sleep pattern as he will be occupied all day and not be able to sleep. If he is stimulated both physically and mentally then he will hopefully also become both physically and mentally tired and a better sleep pattern develop. Nursery have also noticed that some days depending again on his mood all they get is echolalia even though they know he is capable of more now. I'd say that his speech has developed so that 20% of his speech is independent now with basic sentences now appearing. The rest of his speech is still either just jargonistic, echolalia or learnt phrases (mostly from TV). What would you guys recommend? Do you think I am being unrealistic wanting him to start school ontime with support or do you think they extra year would actually be of productive benefit? I think intellectually he needs the stimulation of school and his nursery think he needs the structure to his day that school would be able to give where they are not in the position to do so.
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