I really hope there are some folks about ...

[chegirlshadabloodynuff]

I have been having a few weeks from hell. Lots of kicking off from one of my kids. Its not the issue here but its made it hard to take this in. Need to put it down.

I have DS who is nearly 7. He has been delayed all his life. He has recently been dx with auditory processing disorder but has always had LD.

He has been under various agencies all his life (we fostered him before adopting him). Despite all this monitoring nothing much concrete has been done. Vague stuff about learning delays and developmental delays etc.

I recently applied for a statement because he has been dramatically underachieving (i.e. not achieving) at school. School have been rubbish up til now but are suddenly producing reports stating that he is not coping with all aspects of the ciricullum, needs constant adult support etc. His EP report was pretty dire and his scores were rock bottom.

As part of his statementing I asked for an agency we have been involved with to be approached for their input. I was asked to come in for a meeting with consultant to facilitate this.

So anyway - I walked in there with my little boy who I had been told had mild learning difficulties and who we had spent years 'waiting and seeing' (although I have always been concerned and bought up these concerns with schools, drs, child developement team etc) - well I walked out with a little boy who had 'severe learning difficulties, global developmental delay and who should not be in mainstream school'

The consultant was very nice and supportive. He was flabberghasted that DS was being expected to function unsupported in a mainstream school and actually laughed when I told him that we had been told DS had 'mild learning difficulties' (not laughing at me).

He now says DS needs an urgent, indepth assessment to give him a proper dx and that I should be looking at special schools for him. He says I should be in contact with Mencap etc to get the support we need to enable DS to flourish. He also wants him to be assessed for ASD.

I really dont know whether to be pleased that someone is taking DS seriously at last or totally overwhelmed by what he has told us.

It would be easy to think 'why is he right when no one else has bothered much' but we have been going down the other route for years and it has been getting us nowhere and DS is getting further and further behind.

Sorry for long post. Not sure what I want from it but at least its all written down now!

Hi Chegirl,
Poor you. How utterly overwhelming. My DS has different needs but I always come out of those sort of meetings feeling bleak and devastated and confused. Takes me a few days to get the hang of what to do.

Have no concrete advice as I'm in a different situation but wanted to sympathise and say 'hang in there'. Hopefully the ball will finally start rolling and that can only be a good thing for your DS.

chegirl, what a shock for you

Blimey what a shock for you. (hugs) Thank goodness you've finally found someone who knows what they're talking about.

You must be reeling. For what its worth i have a DS who was diagnosed as severe LD and Severe autism relatively recently. He has an early life experience similar to your son - also adopted.

i find my DS is in the moderate range as i think any child with such a poor start in life would be unable to function within the severe range if hes actually severe. My DS would be functioning in the profound range if he was actually severe if you see what i mean? Although i see him as moderate, and he can function at that level in the perfect circumstances, he often functions at the severe level, due to emotional problems etc.

I would say first take some time for the possibility of this to sink in. Then have a look at what is offered in terms of school etc and make choices purely based on your sons happiness. You may find more doors open to you with more of a diagnosis. DS goes to a school meant to be for children below his level again, purely because it had other things going for it and hes happier there.

I think he's happier as due to his early life experinces he finds being outside his comfort zone counterproductive to learning.

im sure other folks will be along, as i need to settle DS, but didnt want to leave your post unanswered. Honestly take some time for things to sink in, and then see where you think your DS wil be happiest.

Ah lots of people arrived even as i typed

Thank you for flying in with some support

Its all a bit odd. We have always known that DS had problems. I work in child development, OH works with young adults with LD. We have been involved parents, taking him to appts, asking questions, pushing for intevention.

But 7 years down the line I feel like it got us nowhere because we are in the same place we wouldve been if we had just ignored everything! Right at the beginning of a solid dx and appropriate intervention.

I know that you do have to wait and see with some children. I wouldnt expect a child with his particular difficulties to be instantly dx and 'sorted'.

But flipping bloody hell! 7 years!

Now I am worried about finding the right school for him and if its out of borough trying to get him a place.....

Gahhhhhh!

No matter what you think as a mum, or how bad you know things are it always feel bad when a proffessional agrees with you. It sort of makes it more real, in a way. It made me suddenly realise that there was no going back and I really did have to deal with this situation now.

You know your son better than anyone and a professional diagnosis can be used as a positive. At least now he will get the help he needs.

The lovely son that you walked into the meeting with was the same lovely son that you walked out with, but now with a lot of weight behind getting him the help he needs to be able to reach his potential, no matter what that is.

Sorry, probably no help at all, but just want to let you know that I understand and I am sure this can be used as a positive when you have got your head around it all.

When my DD3 was diagnosed at he age of 4, I actually blew my top at the lady that was telling me that DD would need a specialist school and would not cope at a mainstream one. I told her that she had got it all wrong and did she really know what she was talking about. I had to eat humble pie a few weeks later when I came round to thinking that she was not actually that evil (the Speech therapist, not DD). I could not accept that my perfect DD was not actually "perfect", but perfect to me. - I have to admit, not always perfect now that she is 15yo!

that must have been a big shock.

I can remember when I first saw a paed who actually looked at dd1, and liistened to what I was saying, and then fired off loads more questions, and started balls rolling all over the place for SALT, Portage, genetic tests etc.

I was so relieved that soemone was taking things seriously at last (I say "at last" - dd1 was only 2 at the time, but we had been seeing docs for over a year by then and kept being fobbed off with the wait and see line too) but at the same time it was a huge shock having my fears confirmed. It still hits like a tonne of bricks, even when you are expecting it, and when the talk about SN schools comes out of leftfield it can really throw you.

btw, don't take the SN school thing as gospel if you don't think it right for your ds - take a look around and see what you think. the most important thing is that your ds goes to a school which suits him.

but yes, grab whatever the consultant is offering with both hands. an indepth investigation can only be a good thing, surely?

But also take soem time to absorb this. nothing happens overnight (I know you know that already!), so sit back and relax knowing that there is someone else out there fighting for your ds now too.

Thanks again. It does really help and I do appreciate your comments.

I have never been one to deny DS's problems but its so easy to doubt yourself when no one really taking things seriously. I work with children with very complex needs and I suppose I do quite a bit of comparing too. In that I see what some children and their parents are dealing with and know that DS's issues could be so much more serious.

As DS has got older the reality is beginning to hit home. I have had a few incidents this week. We have to watch him all the time. Having a toddler with SN is one thing (not easy of course) but looking to a future with an older child/teenager with SN is daunting.

Please dont think I am not positive about my beautiful boy or not accepting of his differences. We love him so much and he has actually done better than he was orgininally predicted to do. His outlook was very uncertain when the little scrap came to live with us . I think I am having a readjustment moment IYSWIM.

Oh my. That's quite the bombshell :/ Of course you're going to need time to readjust.

Good luck with finding and securing a good placement for him.

what an awful lot to take in. disgusting but sadly not that surprising that your ds's needs seem to have been conveniently minimised by the "system" for so long. as the other ladies have said - give yourself time to take this on board, and keep an open mind as to what sort of school placement will best suit him.

Our story is similiar, DS had considerable problems at nursery, seen by every one, IEPs since started school - told low average, needed to concentrate more and improve his behaviour. DS was 7.5yrs when his severe learning difficulties (dyslexia, auditory processing problems) were first identified. His confidence was rock bottom. It was an awful time. We started the statementing process (stressful ++++ - IPSEA were brilliant). We were recommended that DS have an independent Ed Psy report. The independent ed psy recommended that we should consider DS going to a "CRESTED" school. To cut a long story short the crested school we visited was eventually the school named in his final statement. A year on and DS is so much happier at his new school, his confidence grows each day and he is enjoying learning. He still has significant problems but the small classes, with teaching staff who understand SEN has made such a difference. Good luck

It must be quite a shock to you although perhaps relief too that at last your concerns have been heard. Ds has a similar history and was diagnosed with mod/sev LD and ASD (sev) at age 7 (after an lengthy parental struggle and almost no support in ms) and transferred to a snschool (MLD/ASD). He is much safer and happier now and is mostly thriving. We are about to get occasional overnight respite (ds is now 10) and ds attends an occasional saturday club run by mencap.
Look after yourself and give yourself time. I found the months following those assessments whilst I accepted the news and reorrientated to a new future quite difficult. Also I struggled with my anger at the system that had repeatedly failed my child.
Ds is still my lovely boy. Only the recognition of his disabilities has changed. Sending hugs to you!

Bloody hell. I am so fed up.

I just got the intial draft of DS's statement.

It is so weak. It is basically recommending 1:1 OR small group work 3 x a week.

What the hell is that about? I have already been to the special school I had in mind and took the EP report with me. The head of primary seemed to think DS would meet their criteria.

NOW with this rubbish, wimpy statement it looks like DS has a mild LD!

They didnt wait for the report from the consultant I mentioned in my OP. To be fair they have said they will include it if they get it before end of month.

I spoke to SW on the consultant's team and she read me the report and is faxing it over today. HIS recommendations are very clear and he states that it would be very difficult to educate DS in a mainstream setting with JUST his intellectual difficulties.

He also seems to be strongly pointing towards an ASD diagnoses but TBH I really do not think this is the case. I am of course willing to go through the assessment.

How can things be so confusing? The reports are all very clear that DS is having 'significant' problems in all areas. How does 3 group sessions a week address that?

Arrrggghh.

!!! That sounds wooly - and inadiquate! LEAs seeem to specialise in wooly wording!! Is this intended for ms or sns?
We had a very similar draft statement wording for ds which we rejected. I also insisted they change the order of the list of needs to reflect his LD - rather than ignore the LD. We then went for a change of placement panal and all the specified teacher hours were taken out ( leaving only outside agency hours like salt).

Thanks Magso.

I am getting so upset. I know I am horribly hormonal being 33 weeks pg but bloody hell!

The way the thing is worded he could end up with one and half hours group work a week! They havent even specified hours so I cannot guess at what banding the statement is.

In our borough they band them BCDEF etc. D being the highest you get before you reach outside funding. I didnt think he would get higher than a D (almost impossible unless you have complex needs and behavioural issues). But they dont mention the banding if you fall under F so how can I tell what they are talking about?

Tellingly they have made a big deal about his eczema. Lots of points about consulting medics re advice etc. I really think they have put this in to pad the thing out!

I am so fed up. Its ironic. We hadnt really considered SNS until recently. Then it seemed like the best thing and now its all being turned on its head.

This statement is definately aimed at MS. There is no mention of SNS. So suddenly MS is going to work for him is it? After 2 and half years of him not getting anywhere

Sorry for rant!

Is this normal? Is it like DLA when they turn everyone done first time and everyone has to appeal?

sorry you're having this hassle, chegirl.

Ime, yes, the first draft statement is a pile of poo, with very little actual content in it.

Just like the DLA process, they are hoping you will accept that this is "all" your ds needs.

We are an extreme case - we have been in Statementing for over two and a half years now, and only just got a final statement before Christmas, which we immediately appealed and we are now on our way tot tribunal

dd1's first proposed statemnt recommended 7.5 hours a week extra help (non-specified) in a MS setting.

dd1 is severely autistic, and is in a Sn school, with full time 1-to-1 teaching (sadly, we are self funding while we fight. bloody lucky that we can). her most recent statement says she needs small group teaching (again, not specific as to how small a group, or what type of teaching) with SALT and OT "as necessary".

she has a severe languauge impairment, loads of sensory issues, countless OT issues which have never been addressed (you apparently can't get OT here until child is 6. because of course, before then, they don't have OT issues )

I could go on, but I'd just get depressed.

Yes, do fight on. Don't settle for what they say. If your ds needs more help than that, then that is what they will have to provide.

I don't know how the banding system works, don't think we have that here (or maybe I am good at ignoring what I don't want to hear ) BUT they cannot just say that your ds + band D = x amount of funding if that is not going to meet his needs.

The key here is you need to prove what they are saying doesn't work for your ds (sounds as though that wouldn't be a problem, tbh). In that case, they have t stump up more funding to get somthing that does work.

Big sympathy - not what you need while pregnant! (I started d1's statementing when dd2 was a newborn. she just turned 3 )

Thank you silverfrog. I am sorry you are having to fight so hard for so long. How awful.

It helps to know what I suspect maybe true - i.e. they are trying it on.

Its all made a bit more akward because I work within the same team as the SEN. I am part of the specialist children's team. This is good in that I am a face they know but not good in that I have to be fairly restrained. I cant let rip and sometimes thats the only way you get anywhere!

Its annoying that they didnt wait a few days for the consultant's report - they knew it was coming. The EP's report relies on some old SALT reports and most of the developmental stuff is based on yearly reviews which are basic.

I need to pull myself together and get the highlighter pen out.

I wish you all the best with your DD it sounds like a nightmare. (the situation not your DD of course). I hope you get the support she deserves.

You have to fight on. Like the other our inital draft statement was so v bland, it really just offered the same support as he was already having. LEA's do try it on. We immediately rejected the draft statement stating that it did not adequately reflect his needs or the provision that he required. The independant ed psy was much clearer about what support he needed, 1:1 support in all lessons or a place in a specialist school(luckily the cost of the school was less than the cost of a full time teaching assistant). IPSEA were brilliant and as we were on the cusp of going to a tribunal we instructed an educational law solicitor - Emma Turner. It is an incrediably stressful time and so frustrating. You will need to look after yourself as it is a marathon not a sprint. You can make a difference. Good luck

Thanks Dolfin.

We are not in the position to engage any private help e.g. EP etc. .

It does help to know that its part of the process to get an intial bland draft, though its rubbish that you have to go through it too.

DS has been getting bugger all help but this draft could actually be interpreted by the school as a reason to give him less. How the hell does that work!

Big hugs to you. Had a related experience ourselves a couple of weeks when we went from 'settling in issues in Reception' (hence statutory assesment turned down) to 'severe language difficulties - needs to be in a SALT Unit'. Oh and an ASD diagnosis.
As the wise lady said earlier on this thread, although we always knew we had serious problems, it's devastating when a professional actually tells you that you may have been right all along. But whatever they choose to call 'it', the chances are the 'diagnosis' will get you some help when before there was none - and things get a lot more bearable when it isn't just you against the world, we've learned that much. Good luck to you and your beautiful boy.

Sincere apologies, I seem to have accidentally posted this response on the wrong thread and have no idea how to delete it - must cut & paste forthwith! So sorry, muppet.

Please dont apologise!

chegirl, thanks, dd1 is doing realy well (well, she is now she is at the right school!). she's happy, and full of energy. life could be so much worse.

you really do have to fight on.

moondog has a dc with sn issues, I believe, and had to go through statementing, and fighting for what her child needed, whilst being a known face around the SEN circuit - you could try putting a shout out for her and see what she advises?

I can see it would make it a bit trickier, but tbh, the most iportant thing is to know the Code of Practice inside out and backwards, and to quoteit at any opportunity. Take notes on everyhtign, and whatever is said to you, at any point, either whip out a notepad and take notes ("I hope you don't mind, I'll just make a record of that") or if done over the phone, summarise in an email instantyl, for clarification naturally . cc in anyone you think might be relevant too - they hate feelign as though they are being checked up on! every little phonecall, email etc, - create a huge record, as it will all be relevant at some point ("on Feb 23rd, at 3.15, I note I was told that my ds needed to have regular input from a SALT. Please define "regular" - is this to be weekly or fortnightly?" etc etc)

do contact IPSEA - they are a charity that help out with Statement issues ( you prob know that, actually, as you work in the area) and are very good at cutting through he woolly crap and getting quantities pinned down.

Now I am even more flipping confused and worried.

I got a call from parent partnership.

I explained that we had the draft and I said it was rubbish. I told her that consultant had stated he thought DC had severe Learning Difficulties and his needs would be difficult to met in MS. I told her we had been looking at a local special school.

She said:

He cant have severe learning difficulties because that means he wouldnt be able to talk or walk or do much for himself. I said I didnt think this was the case (I would call that severe learning disabilities or a more medical standard for SLD rather than an educational one). She was adament and I didnt feel like arguing.

She also said that SEN team would take any notice of what consultant said.

She also told me that chosen school was for children with medical needs and physical disabilities. Now I know this WAS the case and it still schools offical designation BUT like most special schools it has changed a lot in the last few years due to the amount of MSing going on. There are children there with LD and phyical/LD/No LD/No medical need/no physical need and every mixture.

Again she wasnt having any of it.

I was left feeling very conflicted. It seems like I am being told different things by everyone I talk to. Head of primary at school told me she though DS DID meet their criteria but admittedly this is from my description and the EP report I showed her.

Have I made this all up ? Have I got an idea in my head that DS needs SNS and convinced myself he is worse than he is?

I am so flippen fed up with the whole thing.