Advice, please, on planning DS's transfer from Primary to Secondary. Warning - Very long - sorry!! .

[Niecie]

I will try and keep this short but I think this might end up very long!

DS1 who is in Yr 5 has a dx of AS. We have never been comfortable with this as the clinical psych who saw him said that he had social comms difficulties but not severely enough to be called AS. However the diagnosis was a team decision, which we were invited too but nobody there had actually met DS except me DH and the school SENCO and the OT was not there at all. This is despite the fact that the OT was not there, and he has big motor skills difficulties so her input was important.

I was expecting to get that dx though so not a big shock. We were sent away, told to read Tony Attwood and that there was nothing else they could do for us.

I did read Attwood and it seemed that the dx didn't fit very well. I didn't recognise DS in the descriptions of a child with AS. So I start reading up and I am pretty convinced what he does have is dyspraxia or DCD. There are enough overlaps with AS to account for the social comms difficulties and it takes into account his overriding difficulties which are with his motor and organisation skills.

To get to the point though, last week we had a meeting with the SENCO and DS's teacher to plan for his transfer to secondary school. They were concerned he might not cope with the size of school and the fact that children have to move between classes for each lesson which would leave him stressed and disorientated. Coupled with that is the increased risk of him being bullied and the fact that not all teachers are going to be clued up or even interested in DS's SN.

They shocked both DH and I by suggesting that DS might not cope with catchment school we were planning to send him to and that we might want to think about getting him a statement and sending him to the local special school for children with ASD's. Having been told that we would never get a statement due to the mildness of DS's symptoms we were amazed. His teacher said he was no trouble in class at all, not disruptive except that he had a tendency to shout out instead of put his hand up and he could be too loud.

We discussed the fact that DH and I don't think he has AS anyway, and possibily getting DS reassessed. There were other possibilities discussed are getting him into a really good MS which is massively oversubscribed but which has a 12 child ASD unit. Again we would need a statement for AS. It is also not easy to get too and larger than the catchment school. We could ask around all the local schools, starting with the smallest ones and see what they could offer in the way of help and support. Or we could send him private which we could do at a push but would be a struggle. There we would get smaller class sizes and a less stressed, less crowded school in general where he would get more individual attention. Not the best private school though.

So my questions are,
Should we go for a statement even though we are not convinced about the basis on which he would get one? Would it help? He hasn't needed one so far.

How do we get one? Should we do it or get the school to initiate it?

Should we bother to get DS reassessed now he is 5 yrs older than when he had his dx and things might be clearer? I am worried we would be doing it to satisfy ourselves and it would serve no useful purpose. And I could be wrong. I might be deluding myself but I really don't think I am. If he has DCD or AS either way he has SN and needs some support at school and an awareness of what he finds difficult. I am not pretending there is nothing wrong, I just don't think his dx was handled very well and is not convincing.

Does anybody have any useful advice on managing the transition from primary to secondary for AS/SN children?

Thank you for reading and for your help.
And sorry this is so long.

hello

I'll tryo tohelp, but it's abit out of my age range

firstly - have you visited the schools in question? you, as a parent, know your ds best, and the advice is always to take a walk around, and see if you can spot a chld who is like your child, and see how they are coping/not coping.

if you can "see" your ds in a particular school, and not at all in another, then that helps to answer your question.

dd1 currently attends a very specialised SN school, but we have looked around a whole range of schools with an open mind. some were bordering on suitable if we could get the support package right (even a MS school!) and most were so blatently unsuitbale it was unreal (even though they have all been excellent, top flight schools, can't fault the faciliites etc)

what is your local ASD school like? there are a number that cater purely for AS (I know you have your reservations here), and so maybe it is not as off-the-wall suggestion as it might sound.

I think your first step is to decide what type of school you want, and that will decide a number of things for you. if you decide you want the ASd school, or the MS with Unit, then you will need to set about getting a statement. IPSEA are the people you need to talk to about that, they are very knowledgeable.

what area are you in roughly? LEAs vary hugely, with some being reasonable and others being ridiculous.

if you have doubts about the dx, I would seek a second opinion. as you say, whatever his needs are, they need supporting. would a private dx be possible (just thinking about waiting lists, and if your ds is at the milder end (I know this is meaningless ina way, but he isn't severely disabled, for eg) then you might get bumped down the list)

Hello Silverfrog,

Thank you for replying.

The SN school sounds lovely but is for ASD children. It has an outstanding Ofsted but we were put off almost immediately by the line in the report which said something like 'some children even achieve several GCSE's', like it was a rare thing. DS is bright according to his teacher (and us) and I think we would be doing him a disservice by sending him somewhere where he stands no chance of getting as many qualifications as he can. At the moment, I can see him living a reasonably normal, if slightly eccentric life, (and maybe never leaving home) but that might not be possible if he doesn't get the right education for him, iyswim.

We are in Hampshire. I don't know what they are like about handing out statements. I only know one child who has one (I think). I have just volunteered to be the SN governor at DS's school so maybe I can find out some more that way.

I shall have a look at the IPSEA - I need to get a move on! I suppose my problem is that if we get him rediagnosed and he does have dyspraxia with social comms difficulties then we may sabotage our own efforts to get him in the SN school and the unit in MS. They might not want to take him if AS is not his main dx.

We could go for a private dx but would they be as widely accepted as one that comes via the 'normal' route?

Oh dear, I wish I had paid more attention to threads about getting statements! They just haven't had any relevance before.

Thank you for your thoughts - they have been useful. This stuff has been buzzing round my head for a week and I don't really know where to start. Checking out all the schools in the area is a big task! Now I am ready to go, of course, it is half term next week so I can't get on.

Hello, , I have come to find you from the FV thread.

I'm not sure if I can be of any help though, my DS has been asessed as DCD (which I think is the new name for dyspraxia). This diagnosis has been reached after OT and consultant assesments using lots of physical/mental/visual tests. I know one area that he scored in was that physically he isn't quite right, ie kyphosis/lordosis of his spine and weakness in his hips.

I think being DCD automaticaly puts him in the ASD arena, but he also has some communication problems (and VOLUME control issues!!). He's also lacking in common sense ie he still runs out into the road when there are cars coming (at 10). Oh and he constantly falls over/into things and people.

The reason we finally went for a Dx was after 6 years of teachers telling me there were problems it has really started affecting his school work and he consistantly scores lower then he is capable of. Consultant has mentioned something called DAMP which I can't for the life of me remember what it stands for, but I think links motor skills, perception and attention difficulties.

Anyway I'm waffling on in the hope that you can see where our DC's have similarities. I would certainly push for a new assesment for you, as five years is a long time developmentaly. Plus out of our OT assesment we have got lots of help, a special cushion for his chair that gives him motor feedback to help him sit still and concentrate, grips for pens as his fingers are very bendy and it hurts as he has to grip the pen so hard, and an agreement the he can start to use a computer in school for his work which will continue through to sitting his A levels.

We live in a rural area so the choice of schools is limited but the consultant and OT have recomended one about 30 mins away by the school bus which has a good SN department. I'm baffled about the idea of getting a statement, no one has mentioned this to me, possibly things are done differently in Wales?

Well what a waffle, this has been the last 12 months for me, I find it a little hard to talk about in RL 'cos it makes me well up a bit. In the grand scheme of things I know he's increadibly healthy but to be told he's always going to have problems and his curvy little back makes my heart hut.

Hello Lost, thanks for your post.

I am feeling a bit tearful about all this at the moment so I get where you are coming from and your post made me well up a little too. I was OK when DS got the dx but I must admit, once everybody (including DH) had gone to bed after last Wednesday's meeting at school I had a good cry. I think part of the reason I came away from the meeting with more questions than answers is partly because there were times when I didn't trust myself to speak without blubbing.

I am definitely better (if a little long winded) at writing it all down.

I guess it is not surprising that our boys have social comms difficulties. Partly, for my DS at least, I think it is that he has withdrawn from friendships and playing sports and messing about in the playground because he simply can't keep up. The effort required is too much. And if they can't judge the distance between themselves and a table, for instance, how on earth are they supposed to judge the appropriate distance, or volume to use, or things like turn taking, with a living, moving object like a person?

DS has had OT since about Yr 1 and it has been very useful. Even they have given up on his handwriting though. He was supposed to learn to touch type over the summer which he did to an extent with a view to using a laptop more in school but nothing has happened. There doesn't seem to be very much that anybody can do for the AS part of things. We are working on volume control though. As with all things it is taking a loooooong time to get it under control.

We also have issues with crossing the road. He just can't process the information. He either looks and runs. Or just listens and runs. He can't seem to do look, listen and walk all at the same time. (He is 10 in July so similar age to your DS). He can't focus and if you ask him to do it he just looks a bit . It is scary!!

Have a look at the IPSEA website here which Silverfrog mentioned. I haven't even begun to trawl through it all yet but it looks useful if you do want to consider a statement.

I can see why you'd avoid that SN school, niecie - totally agree that your ds (and every child, obv) has to be given chances to achieve his potential. we moved across the country to keep dd1 out of a SN school like that - she is capable of so much more than sensory play, and messing about with sand should not be the entire focus of even a 5 year old's world, let alone as she gets older.

From what both of you say about your dc, it would probably be very hard to get statements (it shouldn't be, a statement is just a bit of paper outlining a child's needs and what will be done to address those needs, but it will be) - don't take my word as gospel on this, though, and do talk to IPSEA or SOS!SEN - they are the experts.

Likewise, a private dx shouldn't make a difference, although a lot of areas will also want you to go through the NHS hoops too. A lot of this comes down to how hard you are prepared to fight, and how loud you are prepared ot shout, unfortunately. And most schools don't have the funding to help all the children who need help. and LEA's will blatantly lie to you, and guilt trip you with statements like "if you seek OT/sensory integration/SALT for your child, it means another (subtext "more worthy") child will miss out -THIS IS NOT YOUR PROBLEM!

Have either of you heard of BIBIC? Don't be put off by their name, they help with the whole range of SN, from "milder" issues (which can still be a huge problem - like not being able to cross the road safely) to severe SN. They do a full assessment of your child, across 2 days, and have a huge amount of experience to help with putting together a programme of help for your child.

It is the single most effective thing we did for dd1 (we went years ago now). It costs £50, iirc, which is an awful lot of help for not much money at all. and you can access other professionals there, if you need to, like Ed Psychs or SALTs.

I'd think you would both want to be getting some ed psych advice - the LEA ed psychs only say what the LEA wants them to say, and it might be helpful for you to have a truly independant run-down of your dc's needs, without budgets and numbers in mind - an ideal to aim for, if you like.

sorry if the above sounds really depressing, but really, it does all come down to who is prepared to fight the longest and hardest. I have had such a battle with dd1 (we have been in statementing for 2.5 years now, and have gone from being told she wouldn't need a state,ment, to fighting to keep her out of a severe learning disability school (she isn't SLD) and now she is in an intensive 1-to-1 school) and it isn't even over yet.

and she is (not playing disability trumps here, just stating facts) more "obviously" SN than your two sound.

have either of you spoken to Peachy? she has a nearly 10-year old AS boy, I believe, and has to fight to get his needs taken seriously, as he isn't "disabled enough". She is in Wales too, LIW, so would know more about the education system there.

Similar situ except we are a year ahead of you and DS is in Y6 now.

Agree with silverfrog - you do need to see the schools as you know your DS best.

A statement is useful in terms of accessing wider help and funding for that help - so perhaps with a statement he would be able to cope in a mainstream setting with someone to help him find the right classroom etc, and also discreet support at break / lunch so that he wasn't vulnerable.

As regards private education - if you have a statement and a strong case for it (ie you can prove that no other setting can meet your childs needs) then you can push for your local authority to fund the private school fees.

If you haven't already you may find these people useful to speak to.

Too busy laughing at 'disability top trumps' to think of anything useful to say. If DS1 was a card I don't think he'd have high scores for anything, and I'm very glad about that. I think our children are just very lucky to have parents like us who are vocal and intelligent to fight for them, I can be like a lioness when it comes to my boys! I think where I have been lucky is that the school have been slowly and gently been guiding me into getting a diagnosis, so I haven't had to fight for anything yet, it's only a small school (100ish pupils from 3-11) and they have the time to really care and get to know the children. This is making me realise that I'm going to have to galvanise and get ready to make sure we're taken seriously after next year.

Thank you for the advice silverfrog, I'm just very sorry that you need to know so much. Both bibic and IPSEA look useful tools. You said on the other thread that you were noticing differences in your two year old too, it reminded me that at 18 months I was outlining my worries to the HV and she basically shouted 'your son is not autistic' and left it at that. She was a horror, told me to take anti-depressants then DS2 would grow more (turned out he was lactose/soya intolerant).) So we mums must have a decent radar.

I don't know about you guys but my silver lining is that my son is so lovable, he IS very different from his peers as he is much more gentle, the girls really love him and when I turn up at lunchtime to take ds3 in he will stampede across the playground (scattering small children in his wake) to knock me over with a massive hug and kiss and bellow I love you. DS2 may or may not acknowledge me depending on who he's playing football with

Ah yet again I have waffled so long I'm late for DS3, at least I can say I was researching SN online, instead of sniggering at something wildly inappropriate to do with fanjo's or whatever. I will keep an eye out for Peachy, bye.

LostinWales - My DS1 is like that. He couldn't care less who sees him having a hug or a kiss goodbye in the play ground and he comes bounding up to me when I go to get DS2 like a big puppy dog. He also seems to to have the attention of the girls although he doesn't realise yet how much this will be to his advantage in years to come!!

Silverfrog and RoseWater - Thank you both for your advice. There is so much to think about. Thank you for the links too. Something to read tonight! I hadn't heard of BIBIC. The only programmes I have heard of from outside of the system are the Dore programmes but they are a lot more expensive.

I have been considering getting an independent ed psych assessment done on DS. We need to know what he is capable of and how much his SN are preventing him from achieving his potential. I have tried several times to get the school to refer us but they keep side stepping the issue. If the LEA ed psychs just say what they are paid to say maybe this is a good thing.

I know I know my DS best but time and again I come up against people who say that I being his parent means I can't be objective. Well, they can't have it both ways - they can't tell me that I know what is best for my DS and I have to make all the decisions and then say, if I don't agree with them for whatever reason, that I might be too close to him to have a clear picture of what he is like and that I have some sort of unknown vested interest in disagreeing with his dx. Makes me cross actually.

That said, both his infants and the junior schools have been very supportive of him and they don't have to be helping us plan his next school. They could just have left us to work it all out for ourselves. And they have arranged for the OT TA to come before school every morning so that DS and another boy can do their OT exercises and not miss maths and literacy. They don't have to be so accommodating when they don't get any extra money to fund all this.

I have spoken to Peachy quite a few times before. She is amazing and knows so much. How she copes with 4 boys I don't know. I have enough trouble with one mildly SN DS and a NT but slightly bonkers DS2!