BusyLizzie100
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Posts posted by BusyLizzie100
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My son is about to have his Y9 Annual Review, and I've read all the blurb in the SEN Toolkit and Code of Practice about what the Transition Plan is about... but can anyone actually tell me what it's likely to CONTAIN, ie what format it takes - are there certain headings that have to be covered? Are there any examples available anywhere, eg online?
I know Connexions has to come, etc, although they haven't had any contact with my son yet.
It all seems very mysterious!!
Lizzie x
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Hi Dekra,
I have three on the spectrum so their stories kind of overlap; I'll keep it as brief as possible!
DS2 was born 3 weeks early but feeding difficulties weren't picked up (despite my concerns) until he was 10 days old when the health visitor weighed him properly and found he'd lost a quarter of his birth weight. Back into hospital we went because of severe dehydration and we've been 'in the system' ever since. His development was regularly checked. He has hypotonia (low muscle tone) and physio began at age 10 months to try to get him rolling and using his body. We got him crawling at 17 months and walking at 2 years. All developmental milestones were just on the cusp of acceptable.
He was referred to OT and eventually SALT but was discharged after a few sessions. There was no real professional concern, although I was mystified by his presentation...
MEanhwile I had concerns about DS1, who's 2 years older. He was very full on, and although no delays, he was referred to OT with suspected dyspraxia because, as I told the GP, 'He falls over so much and is constantly black and blue from bruises!'. This OT was different to the one that saw DS2, and suggested I read The Out of Sync Child, which is about Sensory Integration. I saw immediately how DS1 fitted the picture, but even more so DS2. Sensory issues are enormous for both boys, although they present differently in each.
I went back to OT re DS2 and he began SI therapy. By that time I'd started reading more and more - DS2 had already been tested for Fragile X Syndrome and Muscular Dystrophy but they had been ruled out. I came across autism and again he fitted the picture. I clearly remember the moment I first posed the question to the paediatrician and OT: 'Is there any chance that we could possibly be talking autism??' In any case I though it could only be 'mild' (bear with me; I hate that expression now!). The paediatrician smiled and laughed kindly: 'Oh no, he has eye contact and is smiley and too socially orientated.'
I was at my wits'end! I had one totally full-on child and one totally passive child.
However the lovely paediatrician obviously did take my thoughts on board, spoke to the OT, the SALT and the nursery school, who all felt there was 'something' there, and she referred him to Guy's Hospital, largely with the OT concerns in mind. By then I was convinced that DS2 had Asperger's. At Guy's, Prof Gillian Baird and her amazing team 'got' him straightaway and diagnosed ASD, with possible additional learning difficulties (since ruled out); he was 4.
By this time we were learning fast! We went back to the same paediatrician re DS1, thinking he may have ADHD, and she proposed Asperger's. We weren't surprised. We were referred to a multi-disciplinary team who confirmed her dx at age 8.
I definitely feel that we as parents led the whole process, and were several times batted back with an airy wave; DS2 especially was consistently discharged by SALT and OT. Unfortunately for DS1 this attitude persisted right through his primary school education, since because he is extremely bright he is able to use his cognitive skills to cover up and mask a lot of his difficulties; however this has come at enormous cost and earlier this year he became suicidal.
The support since diagnosis has been pants.
Meanwhile DS3 came along, hit all developmental milestones super early and was physically a million times more able than the others. He appeared to have very obvious signs of ADHD, which the paediatrician confirmed at age 3. However by age 7 it was established that ASD was the prime diagnosis, although again because he is extremely bright and able its presentation can be very subtle - he is clearly very high functioning. At the moment, age 8, he is benefitting hugely from our experience (!) and his difficulties, or differences, are not causing too many problems.
Autism is very much the norm in our household
Lizzie x
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Eek, DS1 has got an extra tooth that needs to be extracted, then braces. He's 13.
For the extraction, the options are local anaesthetic, sedation or general anaesthetic. The tooth is erupted, ie it's not ingrown or anything so hopefully not a tricky job. I'm thinking sedation might be the best - has anyone any experience of this??
Personally I've had wisdom teeth out under local anaesthetic and general, and I know which I prefer (general!) but I appreciate that a general is a big thing in itself.
I'm really NOT sure he could cope with a local - the injection is often the worst bit!!
Any advice?
Lizzie x
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Hi Sally,
How frustrating!!! Maybe the cancellations are because the tribunal's trying to rattle through all the fast-tracked transition to secondary appeals?!
My friend was at tribunal in June for his Y6 son but they didn't finish, and have to go back in July to finish off. Presumably that second date had to be conjured up from somewhere???
Hopefully, as you say, fate is working in your favour...
Lizzie xxx
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Thinking of you, Sally
<'> >< <'> Lizzie x
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DS1's school is an academy as from today, 1 July.
Does anyone if it's possible to read the funding agreement online? Do we, as parents have access?
Lizzie
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Oh Tally, so sorry to hear such awful news.
You and your family are in my thoughts.
Lots of love,
Lizzie x
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Fantastic news
Feel really pleased for you
<'> Lizzie x
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My youngest son is also 8 and also struggles with bottom wiping. For him I think it really is the idea of not being clean that worries him, ie adequate wiping and then hand washing. I think he also finds the flushable wipes a bit uncomfortable, too, since they leave him feeling a little damp down below...
For my eldest, when he was younger his problems with bottom wiping had more to do with co-ordination difficulties, for example he had difficulty crossing the midline, which is OT talk for having difficulty using one hand on the other side of his body (or down the middle of your body). Part of his exercises involved doing big sweeping gestures, eg getting him to wipe the bath or windows or wash the car. He's pretty successful with wiping now, by the way, at 13, although we still have to remind about hand washing... and those flushable wipes do help.
No answers, I'm afraid, but keep plugging away and praise and reward even the tiniest step forward. Try not to make it a battle and encourage him as much as possible.
Hope that helps,
Lizzie x
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The Clinical Psychologist is continuing to work with my son because of his severe issues with anxiety, low confidence and self esteem, night terrors and Trichotillomania (pulling out his eyelashes, eyebrows and hair) The poor lad has been bullied, isolated and made to feel acutely aware of how “different” he is since day one so his confidence is just shot at beyond belief.and he is still attending mainstream primary. crums, Your lad is doing amazing to still put himself to school, so I understand your concerns over a large secondary school, did the clinical psychologist do any further medical report to support you, you need to prove that the larger secondary school WILL NOT MEET YOUR SONS NEEDS.
I am in a way relieved to read this was a LEA Panel and not the SEND Panelxxx
Does your son have a statement?School Action Plus?
I would continue with the assessments and in the mean time apply for a statement if your son has not got a statement because even just the descrition you described abiut his anxiety and been bulllied is enough to be effecting his learning.
I would defo get more support with this, a local parent group, parent partnership, NAS, Contact a Family.
Good Luck
JsMumx
I agree with JsMum. You can make an application for a statutory assessment yourself - if the LA agrees to do this then a thorough assessment of your son's needs will take place, which means the LA will seek advice from all those professionals involved with your son. The result would hopefully be a statement. If the LA turns down your application for Statutory Assessment, then you'll have the right to appeal to the SEND tribunal who really will listen to you and check all the evidence.
However, the whole application and assessment process takes several weeks, and your son is due to start secondary school this September, which makes your situation tricky. I'm not exactly sure what you can do at this stage - I'd recommend contacting the Ipsea helpline (phone number's on the website) to get some specific advice.
Hope that helps,
Lizzie x
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Hi Parly,
Just to clarify - was this an appeal to the SEND tribunal, or a panel meeting held by the Local Authbority?
Thanks,
Lizzie x
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With regard to my eldest, who has a diagnosis of Asperger's, the paediatrician now just calls it ASD.
My second has always had a diagnosis of ASD.
And my third, who is definitely high functioning and would probably previously have been diagnosed with Asperger's, was diagnosed with ASD last year.
My view is that it's all autism and the ASD reflects the continuum notion.
For the record, Asperger's is most definitely NOT a mild form of autism - my eldest son is currently experiencing far more difficulties than either of the other two...
Lizzie x
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Hi all
My daughter has asd and associated learning disabilities.
We are due to go to her assessment of needs appointment as she is going in to reception year in September and we need a placement at special school but as it stands at the moment unless we are successful she will go in to mainstream school with out support and I am terrified for her safety and that of the other students and teachers:(
Any tips for the appointment?
Hello Hayley,
It's difficult to answer your query in detail without a little more information, but will have a go!
I'm not sure who your appointment is with - is it with a nursery teacher, or educational psychologist? Is your daughter undergoing an actual assessment or has she had it? Is your child currently at nursery school? If you can let us know, I or someone else here may be able to offer more specific advice.
Generally, however, if you have concerns over your child's special educational needs, you can apply for a statutory assessment yourself. This is the first step towards getting a statement - if the Local Authority agrees to assess then it will seek advice from professionals involved with your daughter in order to identify what her needs are and what provision may be needed to support her. After the assessment period this could then result in a statement of special educational needs that will indicate what type of school is appropriate.
If you visit www.ipsea.org.uk you can download a model letter, which you can adapt to include information about your daughter, which you will then need to send to your Local Authority. It will assist your application if you have supporting documents eg reports from paediatrician/teacher etc.
You may actually find it most useful to ring the Ipsea helpline, which is on the website, and an adviser can give you specific advice for your child. It can take a while to get through, but keep trying.
Come back to us if you need more.
Lizzie
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Cant say for how it works elsewhere, but in our case we had to see the GP to get a referral, the first appointment was with the wrong person, which left just days to get the report back before the dead line.
The LA cant write to the paediatrician as we don't have one!
Interestingly, though, the LA wrote to Social Services to get their advice as part of DS2's initial statutory assessment, although we weren't known to social services at that time, so there was nothing they could say.
The LA has to seek medical advice from somewhere as part of the statutory assessment; if you have no paediatrician, would they write to the GP? Interesting.
Lizzie x
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My eldest has been discharged by the paediatrician because she hasn't seen him in a year. She recently told me that if we need her input we would need a new GP referral. It's a strange situation, because he currently needs a lot of input but ostensibly is getting it from the psychologist at CAMHS (although he isn't). I did seek her input because the CAMHS folk are driving me mad by doing nothing, but that's the situation.
On the other hand she hasn't seen my middle son for over a year either, but she continues to prescribe melatonin so his case is still open.
And I saw her just a fortnight ago about my youngest, so theoretically he's got a year's credit to go!!!
I think that you if you require input for statutory assessment the LA will write to the paediatrician and ask him/her to see your child - time limits surely come in to play at that point so perhaps a long wait would be avoided?
Lizzie x
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I'm glad you've got it sorted eventually.
LAs know full well what they are doing. Any delay to providing things saves them money. That is often the long and short of it.
In this case it wasn't about money at all, since we weren't even asking for any additional provision.
It was purely total incompetence. In bucketloads.
I wouldn't credit this particular team with having any idea whatsoever as to what they were doing. Total shambles.
But yes, it is sorted now. I give myself a big pat on the back!!!
Lizzie x
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This week we eventually got the final amended statement following the early review that took place in November.
The LA's delays have been appalling, with me having to prompt them every step of the way.
The final straw for me came when we eventually had a meeting in April about the proposed amended statement, with the SEN officer and the Visiting Autism Advisory Teacher and her boss - the latter both supported everything I was asking for, even adding points of their own. The SEN officer appeared to note everything we said. We felt the meeting had been a good one (a rare and unusual yet exciting experience!)
The newly amended proposed statement that we subsequently received included none of what had been agreed.
Backwards and forwards we went again, numerous emails and telephone calls, me tearing my hair out and saying 'fine, let's just appeal', until eventually the LA got it right.
the appalling thing is that everything that has been amended was gone through at that original meeting in November - why it had to take a further 6 months I really don't know. We weren't even asking for extra provision, just clarification.
I have learnt a very important lesson - I will NOT leave a review meeting in future without ensuring that every detail is recorded; if amendments are recommended, I will write them down then and there and get everyone to sign! Same for any other kind of meeting.
Lizzie x
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BD I merely posted as I see it - and which thread are you reading?? Three or four people on this thread identify with what I've described - hardly indicative of the "spirit of the forum" since there are at least three people who have also said they have not had such negative experiences - (and Bid has had good and bad experiences
). I think everyone here has posted coherent and rational arguments even those describing their personal experiences with the system - I haven't seen any generalisations that "parents know best" or any of the extreme standpoints you assume parents on the forum automatically take up, so I don't know where you're getting this from apart from the script which appears to be activated in your own head every time a thread like this comes up. I think you've kind of proved my point. Everyone has an inherent bias and yours is based on negative experiences and observations of a small number of parents in your son's school, and nobody can claim to be objective in any situation which affects our own child, directly or indirectly. Incidentally I wonder if you would have had the same positive view of the school if the head had been one of those who don't believe in ASD? Where would your faith in the system be if you had had to fight - I mean really fight- to get your son his special school place? Compared to what some parents have to go through to get a similar placement, your battles might be considered mere skirmishes in the foothills, I believe your LEA is one which routinely employs barristers to fight appeals, for example and it's very rare to win a placement like yours without at least one appeal along the way.
There are parents who fail in their responsibilities and some of them may of course be parents of children with SEN - I'm not disputing that. But I simply do not recognise the kind of identikit SEN mummy from hell you describe. I do in the course of my work speak to a large number of parents from all backgrounds and situations so I think am in a strong position to see the wider picture. I can testify that a few are unreasonable, stubborn, litiginous and uncooperative, but as far as SEN is concerned, the vast majority actually have to be encouraged and empowered to approach the school and ask for help. Lets face it, most parents start off with a natural deference to school teachers, and a willingness to believe that schools must know best (probably a hangover from our own school days!) which often prevents the more timid amongst us from raising concerns and we sometimes have to be persuaded out of that position into one of assertiveness and constructive engagenment with the school. I certainly had to be.
As playground mums are in the majority it's more likely that it's mums who will be involved in the showdowns. However as men are more physically aggressive they are probably the ones who have thumped the head -or other parents and been banned from the school playground.
Seriously that's not been my experience - dads are often just as involved in their child's education, making phone calls and writing letters and going to meetings, it's usually the case that mums have more time in the day to routinely deal with school issues. I didn't use the word "feckless" to describe SEN parents so don't know how that crept in. (What's the opposite of feckless anyway?
) Parents usually start off ignorant of the system and as Bid says the whole SEN process taxes even the most intrepid parents but ignorance doesn't necessarily indicate that they can't observe from their child's behaviour when something is going wrong at school. Yes (heresy!! 
) I do believe in some cases parents may know what works for a child - or what doesn't work - better than school staff do and in some cases, better than some professionals. Depends on the school. Depends on the parent. Depends on the professional. Of course there has to be compromise and parents should not dictate everything but the parent's views deserve more weight than they are frequently given and all the vast reams of SEN consutltation documents produced by governments acknowledge that. As does the good old SEN Code of Practice - (still in force -God knows for how much longer. 
)To be fair, the OP was commenting mainly on his own school experience and he's not a parent but as I said before, there have been some balanced views from both sides - disappointing I know when you like to cast yourself as the lone voice of enlightenment - but you aren't on this thread.
As to mutual respect and "two way nudging" I agree totally. The emphasis has to be on "mutual" though. I could cite many situations where parents have not been afforded that respect or where schools have just got it wrong - how long a list do you want? You talk about exclusions - how about parents who routinely get told just to take their child home and keep him there - never mind the formal exclusion process? Or whose child gets put on an indefinite and purposeless part time timetable as a support mechanism? As for LEA's, I freely acknowledge my own prejudice - and my default position is that with regard to SEN they are not to be trusted until they demonstrate otherwise. I am happy to be shifted from that position but I've seen nothing to convince me yet.
K x
Excellent post, Kathryn. Points well made and very well expressed.
Lizzie x
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We all have our views of the system which are coloured by our own personal experiences, so this is a difficult debate to have because there is no wrong or right answer. BD, I think you do start from the default position that schools and teachers are doing the right thing by children with ASD - (and let's keep to ASD as that was the subject of the OP)and are reasonable. Which is fair enough as that's been your experience. I think unless you've had avenues of help repeatedly blocked, unless you've had a child struggling on for years and years with signs of difficulty being missed, unless you've had one or two or even three appeals thrown in and a few lies for good measure, unless you know that- barring miracles- your child is always going to be in the wrong school environment, you can't understand the utter despair and frustration which may lead parents to become more strident in asking for help - and often the help they are asking for is no more or less than the system is legally obliged to provide.
But I think a starting point would be acknowledging that some parent's do want (I'd go further and say 'expect') their child's every whim accommodated and don't give a flying fig for either the teaching staff or other pupils who have to try and circumnavigate those parents and/or the often violent, disruptive, arrogant, selfish progeny of such parents. But the mere suggestion, despite all the evidence, leads to a flurry of raised skirts and voices as Mums who claim not to indulge their children in such ways somehow manage to identify and take personal insult
Sure there are parents like this out there - (and incidentally not all of them are in skirts, many of the most stubborn and demanding parents who take a stance and refuse to negotiate or become obnoxious to the point of being banned from the playground are in fact men). Let me paint you another picture of a parent who I think is more typical of those who negotiate the SEN system: a parent who is too worn down, too bewildered or too unknowing to do more than just cope, let alone try and impose their will on the school. Such parents may be able to summon up the courage and energy to approach the school but they do it with diffidence and remain quietly apologetic about having to ask for support for their child. They don't know what to ask for or what's possible because they havent got the information they need. If they become manipulative, it's often because they have learned to be because that is the way they've been treated themselves - I doubt whether most parents have the energy to initiate such mind games.
Going back to Robert's OP - at a gut level I'm inclined to agree with you. My daughter had the ability to leave school with the full complement of GCSE's and A levels. She had no behaviour problems, was never aggressive or disruptive and was really motivated to learn and work. Yet she left school with no qualifications and a severe breakdown and I have to say, very little value added in terms of intellectual development, beyond Key stage 1. Call me idealistic but I sent a child to school at 5 hoping she would be happy and reach her potential. I had no reason to think otherwise - she was desperate to start school. Something has to be wrong with the system if a school cannot help a child learn who wants to learn. Something has to be wrong with the system where the only way for some children to learn is to be sent away from home, where there is no educational need to be.
Going with my head and not my guts - there are obviously schools and teachers which do support children well with ASD, as others have posted. How far they would be supportive if the parents weren't nudging them in the right direction, who knows? One thing is for sure, cuts to LA budgets are going to make life a lot tougher for even the schools which are doing OK.
K x
Again, thank you Kathryn for an excellent post.
As Bid says: 'I think an excellent description of the education experience for the many thousands of children in mainstream schools, who either do not have a Statement or whose Statement is inadequate or unfulfilled.
'You certainly speak for our experience of the education system.'
Lizzie
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Its my birthday Sunday...what a bonus it being mothers day too!
Me too!
Makes a change from having Easter fall on your birthday 
Lizzie x
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oops double post!
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I guess the starting point is to find out why he doesn't want to do PE or what is stopping him. Some suggestions have been made already, above.
Is your son able to talk about it with you? My son (13) hates PE for lots of reasons. He is dyspraxic for a start, so very uncoordinated, which affects him on the pitch, for example, in trying to kick a ball, but also in getting undressed/dressed and in just moving around in a small changing room. He also hates the noises, all the shouting during, for example, football, and the joking and banter in the changing room, as well as the acoustics in the changing rooms and gyms.
He also hates the fact that everyone automatically knows the rules, both socially and for the games, or at least picks them up so much more easily than him. He struggles to tie shoe laces, then suffers extreme anxiety worrying throughout the preceding lessons about tying his laces, so that he feels sick.
My friend's son hates PE because it makes him sweaty and he hates the sensory nature of it; he also worries about it excessively, often days in advance of the actual PE session.
It very much demands from where your son's refusal stems. Some minor adjustments can make a big difference, but sometimes it needs a little more investigation. What do school think? Who introduced the idea of walking around the pitch during PE? Is he expected to do it on his own or accompanied? Maybe that is not working for him as an alternative.
Sometimes suggestions are made based more on what resources are available rather than what the child actually needs - for example, there may be no spare staff to work with him on something different at that time, whether it's social skills or an alternative PE activity -sometimes a little creativity is needed, such as finding an activity that works for him, such as trampolining, or something a bit more 'niche'. Your son is statemented, so this would definitely be something to bring up at review, if not earlier.
I don't know your son, but I think it would be a big help to unpick what is going on for him, ideally with a trusted adult or autism expert. There could be so many reasons for his refusal that sometimes we just can't guess!
Lizzie x
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might be worth an eyesight check too.
and perhaps also worth investigating whether coloured overlays could help.
Lizzie x
Autism or Asperger - does the diagnosis matter?
in Education
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And Asperger's is NOT a mild form of autism.
This is what the NAS advises the media:
DON'T SAY: Asperger syndrome is a mild/rare form of autism.
DO SAY: Asperger syndrome is a form of autism
Lizzie x