Jump to content

Flora

Members
  • Content Count

    4,394
  • Joined

  • Last visited

Posts posted by Flora


  1. Thank you baddad and Oxgirl xx

     

    Baddad... I'm not old enough for a job knitting shreddies (grannies do that!), Cuckoos are now wearing nappies because of the budget cuts (no money to pay anyone to clean up their 'cack' :shame: ) and everyone know the bends are put in bananas by the little people who used to collect all the silver foil off kitkats before they started using plastic wrappers :)

     

    Flo' :D


  2. Hi all

     

    Haven't been on here for a long time! I am now working full time and just don't seem to have the time. I've recently started reading again and have an urge to join in so I'm sort of 're introducing' myself if that's ok. Hope everyone is well and looking forward to catching up. :)

     

    Flora :)


  3. Hi sally

     

    The school I was fighting for is an independent residential special school for kids with AS. Like yours my LEA also brought the HT of one of their best special schools (for hfa and as that is) to the tribunal, but she was on my side which of course helped enormoursly as she was prepared to tell the panel that she would only have Bill if he had two full time dedicated TA's with him but ultimately didn't think it was an environment he would ever settle in which when she said it I had to refrain from dancing round the room! It was a rotten long hard battle but worth all the effort when the tribunal ruled in our favour (literally everything I asked for) and after 18 months at the school my son is a different lad, he's blossomed and growing into a really lovely young man.

     

    Good luck in your quest for services, my youngest son has dyslexia and dyscalculia (with strong asd leanings) and I know how frustrating it is to get any school to really take that on board, but as he's ultimately a happy chappy I decided to give us all a break and leave well alone

     

    Flora xx


  4. I went to tribunal in February 2008 for all parts of the statment. We argued that my son needed access to a school that used a whole school approach to TEACCH (not sure if I've got that spelling right!) which is a specific environmental and delivery approach for kids with social/communication disorders. I can't remember the details but can dig them out if you need any more information. (I won the tribunal btw).

     

    Flora


  5. Hi all :D I don't post much/at all now but felt the urge to log on and post on here because I can't stand SB's voice (am I the only one?). When I'm in the car and wild horses is on the radio (which it is very frequently at the moment) I have to press the mute button or change stations (only to find their playing it on radio one as well as two!!! :D Her voice makes me want to drive the car into a wall!

     

    anyway, just had to post. Hope all well with everyone :)

     

    Flora


  6. Just popped on to share some good news. Bill's renewal came through in the summer (he was awarded originally until his 16th birthday which is the end of this month). I put it off until early september because I couldn't face doing it. But spent a day filling it in, another day writing supplementary information. I got his teacher and one of the care staff at school to prepare something, and then went through the NAS supplementary form with him (thanks to Nellie for providing the link otherwise I wouldn't have known it existed). This morning I heard that he's been awarded higher care and lower mobility for an indefinite period of time. I'm really pleased for him as it means he'll have this money for the foreseeable future, but what do they mean by 'indefinite'? Does anyone know?

     

    Flo' :)


  7. It's a horrible long process but well worth it if you've got the stamina to stick it out. My son was out of school for a year by the time we went to tribunal, but the battles with the LEA started years before that even. It is worth it when you know you're right. At the time it felt like time had stood still but it does pass and you at least have the time to gather all your evidence for the day when it eventualy arrives.

     

    Good luck.

     

    Flora


  8. Personally I think they should let you wear the jumper you want, as long as it's smart etc. It's such a trivial matter for them to effectively exclude you over, and clearly very important to you. My son (nearly 16) has real difficulty too with the feel of fabrics and certain colours (he can not bring himself to wear blue and all fabrics have to be soft); I think I'd be really annoyed if he was effectively denied an education over a jumper!! He only just scrapes by wearing an 'approximation' of the uniform his school have. He won't wear their jumper at all because not only is it blue, but it's got long sleeves and he has to put it over his head (if it's long sleeved he'll only wear it if it is a zippy jacket type thing). In winter the school compromise by allowing him to wear a neutral coloured zippy up fleece if he's cold (worn over the school polo shirt). It's very unimportant especially in light of what's at stake if the school were to dig their toes in.

     

    Hope you get some where soon and that the school take a more reasonable approach. As long as what you wear is clean and smart and you're polite about it, I can't see why they are making a big thing of it.

     

    flora :)


  9. Hi

     

    I don't post here very often now, as I'm working full time and very busy. But I felt compelled to briefly post in this thread, just to offer some hope and a broad view, on account that I've been through this with my son and come out of the other side (and lived to tell the tale...:D)

     

    My son is now almost 16, but from the age of about 11 or 12 to just a few months ago he was very isolated and socially phobic. He would use every tactic in the book (and a few inventions of his own) to avoid any situation other than sitting in front of his computer in his bedroom either at home or at school (he's at an asd resi school).

     

    He has all the reasons for this that are common with ASD... sensory integration disorder, anxiety, depression and all the other usual social and communication difficulties, with the nasty addition of teenage hormones which do make things worse. However, it's very very important not to give in to these avoidance techniques as it really does stop them from ever overcoming or being able to even try to overcome any of the difficulties they have to face. For them to gain in confidence they need to make progress, however small, if you allow them to avoid things then they get the message that the only way to overcome or cope is to avoid a situation, and that really doesn't do them or any of the family any good at all.

     

    I really feel for you becuase at 13 you probably still have a way to go, but think of what your daughter is capable of and what you would like for her, and use that as the light at the end of the tunnel. When you feel that you are being cruel because she is scared or fearful of what she has to face but you are supporting her in facing it anyway, keep your mind on that light and remind her to focus on it too... which is her gaining in confidence at each achievment (however tiny) and gaining strength from that to get to the light at the end of the tunnel.

     

    Hope this makes sense.

     

    flora


  10. I certainly don't believe that being 'deliberately' rude is an AS trait. Being blunt and speaking openly (as some people on the spectrum do) is not being 'deliberately' rude; they are two very very different things.

     

    I have to say, my son has been through some hellish times at school over the years; he's been suicidal and had two major crises which could only be described as mental break down, but he's never been deliberately rude. He's 15 now and can be very difficult etc, but even difficult though he is, I still wouldn't say he was ever deliberately rude.

     

    I think regardless of the cause, it's important to teach young children that there is NEVER a reason or excuse for being deliberately rude. Believe me when they get to 15 you'll wish you had drummed it into them because the problems that naturally occur as a result of all those hormones whizzing about will be a whole lot easier to deal with if you drive home the basics of right and wrong and what's acceptable or not, at a young age.

     

    Flora


  11. The use of the word 'mild' in describing where AS is on the autistic spectrum is extremely misleading and causes all sorts of problems and misunderstandings.

     

    I haven't got time to type much just now, but my son also scored very high on the ADOS test.

     

    There's a difference between high functioning and 'mild', used more in relation to cognitive ability than anything to do with autism. ie, children lower down the spectrum (more classic autism) tend to have learning difficulties and language disorders to a greater degree than those with AS, hence the differentiation and use of the word 'mild'. However, this has no bearing on how an individual is affected by the triad of impairments related to all ASD's.

     

    Sorry such a brief reply, it's Friday night!

     

    Flo' xx


  12. Bill frequently stops talking for hours and days at a time. Melt-downs are horrible but the lack of talking is in some ways worse. He's done this for the past few years (since he hit puberty)... I'm just hoping that he doesn't do it for everyand finally grows out of it when he's finished these hormornal years. I too tend to shut down, although I don't not speak I find my voice very strained at times and prefer not to have to talk to people.

     

    Flo'


  13. Interesting exchange of views :lol:

     

    Can only add my own experience. Bill as a 3 year old was a nighmare in nursery. He didn't care what his peers thought of him so was quite happy to have tantrums and reactions to things not being the way he wanted them. He had none of the usual social pressures of being embarrassed about crying or kicking off in front of the other kids.... right up until the age of about 11!!!! It wasn't until he got older that he managed to keep his reactions in check until he got home and yes, that's when the real problems started. It was his lack of care of peer opinions and sanctions at school that actually drew attention to his problems in the first place and got his teacher to instigate the road to diagnosis. He was a lively handful at home but never really badly behaved.

     

    I'm not saying that the OP's child doesn't have issues... it certainly sounds as if she is causing problems for all around her so there's certainly something going on. Whether that 'something' is autism or not is not for us to judge or decide, only time and professional assessments will determine that.

     

    I hope the difference of opinion ( and the misunderstandings ) in the thread doesn't deter the OP from continuing to seek help and to find answers. However, it's very difficult at first to seperate the issues of HFA/AS from the usual toddler behaviours. Possibly why many high functioning/AS kids aren't diagnosed at pre-school age, compared to those with more severe autism who tend to get in the diagnosis system a lot quicker due to missed mile stones that high functioning kids tend to meet (speech and language being one that springs to mind).

     

    However, that being said, I think all of us with kids who weren't diagnosed pre-school will agree that we had very big worries and anxieties about certain aspects of our child's development; the problem lies in that in DESCRIBING those problems they do come accross as sounding similar to many of the negative toddler behaviours and until a child misses certain expected levels of maturity it's a very difficult thing to diagnose. I spent years with Bill hoping he would eventually mature and grow out of it... I still do!! :lol:

     

    Flo' :D

     

     


  14. Bill was always a handfull, but after the first MMR he developed permanent diahorea and became incontinent (within the first day and it lasted for months and he was under a consultant for a year), after the booster he regressed over night after a severe local reaction (leg swelled to 3 times normal size and very high temperature), as did ben after the first one and so I never let him have the booster because by then I realised there could be a connection.

     

    I work with a woman whose son is severely autistic. She has video of him before his MMR triple vaccine which shows him walking and talking, the video she has of him afterwards is of a mute child (still mute at age 11) not walking or doing anything at all. She is currently battling with his proposed secondary school who won't take him in September unless he has the booster MMR. :(

     

    As far as I can see by experience and observation, there is enough anecdotal circumstancial evidence to cause serious concern regarding the MMR triple vaccine.

     

    Flo' :(


  15. hi Bluefish

     

    My son was dx in late 2002 and it was only very recently that I went through the grim reality phase. I spent most of the years struggling with him through the education system. He is now in the best possible environment (for him) to receive an education and it was only earlier this year that I went through what you have described in your post. I'm still struggling with it now. The fear that comes with that is immense isn't it?

     

    Flora XX


  16. Does your son have trouble with pronouncing his words or is it a language problem?

     

    My youngest son had a significant language delay (although his speech was very clear). He used to echo everything said to him and then when he started trying to have conversations it never made much sense because it was clear that he didn't understand what he was supposed to be conversing about. He was found to have auditory processing problems and had sound therapy for this and within the time of the therapy he made massive developments in his language. At the age of 12 now he never shuts up and has an excellent vocabulory etc. So quite a positive outcome for us.

     

    Flora


  17. To access this sort of provision there needs to be a strong case to support the need for a twenty-four hour curricullum.That is the need for significant support and provision relating to ASD throughout the 24hour period.

    If I have made any mistakes in my information please do correct me those with personal experience. :) Karen.

     

    Hi Karen, hope you don't mind me pointing out that there is a way round this. If you can't prove a need (or there isn't a need) for 24 hour curriculum but there is no other suitable provision within reasonable travelling distance, then that presents a practical need for a residential placement. Just thought I'd point that out.

     

    Flo' XX

     


  18. ..........I agree, ...my son had a very difficult time at primary school with a group of about 6 pupils.Because my son had the disability he was seen as the problem.They banded together and things became incredibly difficult for me and I was dx with a depression/anxiety disorder I was under considerable stress with it all.However I never let myself sink to their level , and I have to say it does little to help the situation.

     

    Hiya Suze,

     

    I totally agree !! Two boys were nearly expelled from primary school because they made William's life a misery for a while.... but I would no more have tackled the parents than I would have approached the kids who were horrible to him! It is over stepping the line and probably would make things far worse.

     

    ...........and why as always does it appear people are rounding on Baddad for making some very valid points?

     

    I agree with this too!

     

    Flozza XXX :D


  19. I want Ade to win, but that's only because I want to be best friends with his wife :D

     

    Marco looks like he might smell bad :lol:

     

    Linda looks like her face is melting (she needs a botox top up urgently!)

     

    Flo' :D

     

     


  20. Bill doesn't like going out at all. He never wants to leave the house if he can avoid it. He does go out when he's at school (resi special school), to sainsburys and to the park and various other trips. This definately appears to be linked to being a teenager. Pre puberty he was quite happy to go anywhere! Now he'd rather sit in his room playing WoW or other games and talking to his friends (about the games) on the phone or MSN. I've decided not to worry too much about this. I know he CAN go out and I know that eventually he will grow out of this awful hormornal phase.

     

    There is quite a bit of literature around which outlines how difficult the teenage development years are for kids with AS. Obviously they'll all respond differently to this.

     

    It's a good idea to get them slowly but surely back into the habit of going out to avoid developing entrenched phobias, but I do strongly believe that either way, providing there are no mental health problems going on, that they do grow out of it eventually.

     

    Flora :D


  21. A few weeks ago I was staying with my auntie and uncle who dug out some video footage they had of my kids when they were all very young. I hadn't seen the footage before and was amazed by the very typical and text book presentation of AS in my son. Bill, who is now 15, was about 4 when the footage was taken and I hadn't even heard of AS at the time, let alone had any idea he might have it. I was amazed by how much flapping, spinning and weird jerky body movements he did constantly, he was literally never still the whole way through several hours of video footage and made absolutely no eye contact nor really listened to anyone else, just his own voice. I just used to think he was a bit hyper! We aren't given a map or a guide book on child development, we just tick off certain mile stones as they go along, and HF/AS kids tend to meet most of the mile stones even if we are aware they are 'different'. I actually thought that with Bill I had a 'genius' on my hands as he was brilliant at jigsaws, talked before he was one year old, and could read before he started school.

     

    Sometimes I think the fact that I had no idea of AS or HFA is what made the diagonsis so straight forward; ie, I wasn't pushing for it, it was instigated by his school and I think my ignorance of the labels made the job of the professionals a bit easier.

     

    We can only do our best.

     

    Flora :D

     

     

×
×
  • Create New...