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lesleyc

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About lesleyc

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    Norfolk Broads
  • Birthday July 6

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    Female
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    Herts
  1. lesleyc

    Equasym XL

    Hi M recently diagnosed with ADD too! Currently trialling Equasym XL, 20mg. Seems to be helping. In his words he's not being told to sit up and Pay attention in classes, and is managing to easily get work completed in class, including the extention work!!! Thank God - he started his GCSE courses this year. Had headaches and loss of appetite for the first 2 weeks but this seems to have tailed off now. Just looking for any info re longer term use ...
  2. Hi Lizzie The COP outlines best practice. See Chapter 5: Identification, Assessment and Provision in the Primary Phase - Annual review 5:68-5:71 Hopefully you have access to it. Essentially: Yr 5 review to enable all to agree provisionally what sort of provision will be necessary at Secondary so that parents can go and look at/apply to schools with these things in mind. If it still isn't clear what provision will necessary (rare since needs are unlikely to change that much in a year) at this stage also hold an interim or early review in autumn term of Yr 6. Whatever happens, the Yr 6 review needs to held in sufficient time to allow final decisions to be made etc as the Statement MUST be amended by 15th Feb of the year of transfer. It is recommended that the SENCO of the receiving school is also at that the Yr 6 review. Hope that helps! Lesley
  3. Hi Lizzie The COP outlines best practice. See Chapter 5: Identification, Assessment and Provision in the Primary Phase - Annual review 5:68-5:71 Hopefully you have access to it. Essentially: Yr 5 review to enable all to agree provisionally what sort of provision will be necessary at Secondary so that parents can go and look at/apply to schools with these things in mind. If it still isn't clear what provision will necessary (rare since needs are unlikely to change that much in a year) at this stage also hold an interim or early review in autumn term of Yr 6. Whatever happens, the Yr 6 review needs to held in sufficient time to allow final decisions to be made etc as the Statement MUST be amended by 15th Feb of the year of transfer. It is recommended that the SENCO of the receiving school is also at that the Yr 6 review. Hope that helps! Lesley
  4. Hi Although our son had been diagnosed with AS in Reception and the school were doing lots of stuff to support him, we waited until he was in Yr2 before we told him. It wasn't until then that he really started to notice differences, plus he began to have some self esteem issues. We also felt that being that little bit older meant that he would be better able to take it on board. We just gave a very simple 'age appropriate' explanation and used the things that he had noticed himself. We made sure that we stressed the positives aspects of AS and his personal qualities as an individual. We read the "Blue Bottle Mystery" story as part of that too. We also explained was happening in school & home to help with his difficulties so he knew that something was being done to help him. There were tears on both sides, and I will never forget him asking me to take it away...but it was better that he began to understand himself better and help him feel that he had some control over all of this. When he was in Yr4 he took my copy of Luke Jackson's 'Freaks, Geeks and Asperger's Syndrome', as he wanted to read what it was all about as experienced by another young person with AS. He has read many AS related books of mine since then (he's now 13 1/2) which have helped him better understand his AS and himself. I think the key here is to provide the information they need/want when they ask or look for it. I have all my books in one place - he just goes and helps himself!!! As he has got older we have continued to discuss his difficulties (new and old) and explore/agree ways of dealing with them. We are very lucky that he is an intelligent boy with the ability/willingness to engage in this.[/u][/u] Our goal is always to support him finding a way to best manage the situation towards a positive outcome and putting him more in control of his life. An oft used expression is "When you leave home ..."! Here's hoping!!!
  5. Thanks for everyones replies. It's great to get feedback on other people's experiences - both the positives and negatives. To be honest - our reasons for doing this are to try to desensitise him to noise and close contact with large volumes of people so that he is better able to cope and concentrate whilst in Secondary school from next year. He is used to a small primary school (115) where general noise levels and corrider traffic are not high. His next school is reasonably large with approx. 1400 pupils. Quite a change so I am willing to give it a go on the off chance that it will help. There seems to be a lot of positive info. and data out these (albeit mostly from the States) that shows that it can/does make a difference. I know - all our kids are different - and what works for one may not work for another - and clearly that it what the replies so far have shown. Anyway - I have started him on the programme and after initially complaining that it gave him a headache for the first few days - he is now quite relaxed about doing it every morning and night - he sees it as a relaxing way to start and finish his day. We did have to build up to the 30mins over about 10 days because of the headache issue and he didn't like the way the headphones "felt" on his head. He no longer gets the headaches but is still not 100% "comfortable" with the headphones but he can tolerate them well for 30 mins. We haven't seen any improvement yet - but it's very early days (about 2 1/2 weeks). We are scheduled to do weekly play based therapy sessions in conjunction with this, run by the private OT. They start in the next few weeks and will run for about three months. They will primarily be to address vestibular problems which were a key area of difficulty for him and because the vestibular and auditory senses are so closely aligned. The OT wants to see to what extent, if any the vestibular problems are influencing the other assessment results. The plan is that after three months he'll be reassessed and then the next actions determined. The hope is to move to just a home run OT programme maybe with occasional follow ups with the OT, if necessary. The bank balance and I shall need good evidence to agree if and how to continue ! From what I have been told by the NHS & Private OTs, and from research I have done - the programme works best when combined with other activities rather than just in isolation. Certainly Xs sensory assessment results and profile shows that nearly all areas are significantly adrift so it would not make sense to just tackle one without consideration of any of the others. We shall see how/if all this works out for him ... I will report back, whether positive or negative just to add to the info. available on the forum! Just for reference - we were supplied with four CDs and appropriate but inexpensive Headphones at a total cost of �250 via the private OT. These came from the States and the CDs are not available for purchase unless you are qualified in the programme. I did check the pricing on the supplier's website and it seems that we did get everything at cost plus the postage and customs fees. This is a one off cost - you can keep doing the programme for as long as you see benefit/ you wish but progress should be monitored by a qualified person which would obviously add to the overall cost. Personal winge - It does annoy me that Auditory Integration Thereapy or any of the other sensory therapies are not uniformly available on the NHS. It is particularly galling since I live in Herts. where AIT is not available (but their OTs are actively recommending it), yet they tell me that it is in available in Essex and Cambridgeshire! Aaargh...
  6. My son (now 11) has AS. Recently assessed by private OT recommended by NHS OT!!!. Difficulties identified "Somatosensory Dyspraxia, with modulation difficulties. Test results indicated that x has a Sensory Integration Dysfunction..." He has been started on a Listening Program which the NHS OT said should be v beneficial but which is not available on NHS in our area! Typical. Anyone doing/has done this? What sort of effects/results? I have read lots of background info but would love to know more about how it has helped people.
  7. Hi, We're in Bishop's Stortford, Herts. Would love to meet up with anyone localish! Lesley
  8. Hi, M has been using the capsule form of Eye Q for about 18 months. He is very happy to take them (without anything to drink ) - although I know that they have proven a bit too big to swallow for some other kids. There has been a marked improvement in his ability to concentrate, so we think it has been well worth the expense! At least with Boots you can stock up using their 3 for 2 deal - buy in store or online. Three of the 180 capsules lasted approx. a year so only need to worry about that once a year!!!
  9. lesleyc

    Introductions!!

    Hi, We are based in Bishop's Stortford, Herts. I run my own business part-time around the school day/terms. We have one child, "M" who is 8. He was dx with AS 3 yrs ago - we also feel he is dyspraxic but have no dx. He's in Yr3 in mainstream with 20hrs 1-to-1 (what a battle we had - and still have to retain!) and is slowly but surely making progress. The school is small, positive and caring - M is the only pupil there with AS. He's a happy, outgoing boy with a small circle of friends - but his social and body/motor skill deficits are starting to cause more issues for him and others. He is in Cubs ( just moved up from Beavers), does Judo, Trampolining and Swimming. After advice, we elected not to go down a restrictive diet route. However, we have been using Eye-Q for about a year (for concentration) with some success, are about to embark on DDAT at the DORE clinic (for co-ordination, body awareness and organisational/planning skills) and are keen to pursue drama club/workshops for social awareness & skills! Anybody any experience/advise re any of these? Looking forward to "chatting" you all though the forum - and would be interested in "meeting up" with anyone with a similar aged child like M who is local to where we live. lesleyc
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