Need help understanding UK's concept of SN

[ICanDanceTooButNotLikeYou]

Dear all,

This is my first post, although all the reading in mumsnet I've been
doing in the last few months has been extremely helpful.

My daughter is 4.5 yo and going to nursery (she will start reception
this September). Her first language is not English, and at home we do
not speak English to her. We moved to UK when she was a baby. Starting
nursery was difficult for her. She was crying continuously for the
first several weeks. Now she's adapted and very happy everyday when
going to nursery.

Around September last year, her teacher said our daughter showed some
minor deficits in her development. Apparently she was misbehaving
especially during carpet time. She stressed that our daughter was
advanced for her age in other areas, but that she just needed some
assistance with her language.

So she was referred to a speech therapist who assessed her. Then in
February she went to a speech and language therapy for eight sessions.
And she seemed to enjoy it and improve her english. So far so good.

This week we finally got the report from the speech therapist stating
a long list of issues, mostly related to attention deficit and lack of
social skills. Some comments are a bit strange, eg "does not start a
conversation" - well, until recently she did not know enough English.

In the meantime, an educational psycologist has been observing her at
nursery. The speech therapist has also been observing her there last
fall. We never receive any reports of the observations nor are invited
to them.

2 months ago I had to fill in a questionaire for a referral to
occupational therapy. The teacher suddently told me about it one
morning, and she filled it in herself by asking me questions. It had
some very intrusive questions, like what do we do for a living, does
our family have friends, what kind of apartment do we live in, how our
relationship with our daughter is. I did not feel too intruded at the
moment as the teacher was kind and respectful, but more and more I am
starting to feel that decisions about our daughter are being taken
without consulting us. Is it usual in UK?

At the end of the "interview", I asked the teacher if our daughter was
classified as a special needs child. Nobody had told me about it until
then, but I was starting to suspect it myself. The teacher replied
that indeed, our daughter was already classified as having SN, but
that at the moment she is not being statmented.

We are being told that she will be referred again for more assessment,
and more therapy. All the time, therapists and teachers are very
careful to be indefinite, not to be precise about what is the matter
and what it implies. This elusive behavior is what worries us most,
especially since we can't be sure of what to expect, and we seem to be
losing control of our daughter's life to bureaucracy.

Do you think we have reason to worry? Are there such situations when
one cannot decide what is best for one's children? I understand this
might be necessary in extreme cases, but where is the limit?

For the record, at home and with small groups of children we do not
see any behaviour problems, we think she is a usual 4 yo. But I do
know that at nursery she's been having difficulties taking turns,
sharing, listening to the teacher, and sometimes seems overwhelmed
with too much noise and too many children.

We appreciate the difficulties she is causing to the teachers, and we
are sure they have best intentions to help us. However, we feel that
we are not being told about what is going on. We do ask the teachers,
but we only get elusive answers.

Having parents' evening next week, would appreciate having your views,
so I know what to ask, and how to word my questions.
Thanks a lot for reading this far and sorry for the long post.

Hi, I would tell them what you've posted here. That at home you don't see behaviour issues ad that could her speech issues not be down to the fact that she didn't know any English at the time. Ask them you would like to know exactly what your daughter is being assessed for as you haven't been told, ask them is it for ADHD, ASD or something similar? If they don't give an answer I would be firmer and tell them as a parent it's your right to know. Set up a special home nursery book an get them to write in it about her behaviour and you can do the same at home, alsO tell them you want them to write down any assessment dates in there so you can be present for them. Good luck and sometimes at this young age they don't know exacty what they are looking at they just see behaviour in a child that is different from the norm. However a lot could be to do with the language issuese

It doesn't seem right that they are doing things without sufficient consultation. You are in charge of your child. How about getting a referral to a paediatrician via your GP and see what they say. I thought it was not unusual for bilingual children to be initially slower with language then speed up as they process it all. It would also not seem unreasonable that a child with little english would be quiet at nursery. What are your instincts? Do you feel there is anything else going on here? I wouldn't be too worried about the nursery, sounds like their communication with you isn't great but they will be doing it with your child's best interests at heart. How about writing a list of questions and taking them in to a meeting and making sure they are all answered?
Do some research into conditions they have mentioned and others like sensory processing disorder and see if any fits in your opinion. Think gp the way to go to put your mind at ease but you should alqays be the one making decisions about your child.

Chundle, Ohmeohmy:

Thanks a lot for the replies and the advice.

On several occasions, I did try to ask the speech therapist and the teacher what diagnosis they were thinking of. As I said, the answers are very elusive. Once I asked her teacher if they were suspecting ADHD, and she said: "Noooo! do YOU think she has ADHD?" I said I didn't, and that was the end of it.
Yet the report we finally received this week says her attention is "delayed".

Also to the questions about how far away dd is from "normality", how bad do they think her situation is, I only get answers that every child is special, they see a child as a whole, they have to help every every child with all their needs etc.

Do you think it is usual for parents to be present at assesments that take place at nursery? I wanted to be present but they didn't invite me, so I supposed that maybe there is a reason for parents not being present, maybe because child's behavior is different when parents are there?
Also, home nursery book seems like a great idea, but maybe nursery teachers are too busy to spend so much effort on an individual child? Wouldn't it be asking for too much of their time?

My instincts wouldn't say that there is anything wrong with our daughter, but then she is our first and only child, so maybe I don't know what is "normal".
At home, in playgrounds, in playgroups she is a happy little girl and has no problem with other children, not appears to be different from them.

Looking online at lists of things that a 4-5 yo should be able to do, again she seems normal to me.

I hadn't thought of talking to GP. I will try that.
Also, I have never heard of sensory processing disorder, I will google it.
And I will definetly go to the parent's evening with a long list of questions.

Thanks again, have to go now, but I will come back this afternoon.

I understand your concerns, though tbh most of what you are seeing is routine and though annoying is for administrative reasons, not for the reasons you are worrying about.

"Special Needs" isn't a straightforward definition in the UK, at least not educationally. Any child who is sufficiently behind in an area to need extra help has to be declared in the school or nursery's statistics and that feeds a thing called the "special needs register" though there's been a recent report by the regulator saying there are too many kids on it and many of them don't have SN at all. Which misses the point, slightly - it ought to be called the "a bit behind" register or something. It absolutely does NOT mean a diagnosis.

In parallel with that, there's currently a drive towards "early intervention" because stats have shown that where kids do have problems (and this is more often diagnosable SN) then the earlier you can give them tailored help, the better they do in the long run. So the nursery has to make observations and if they are on the ball they will get the assessment process started. This is good for the child because the sort of social/classroom issues they are seeing can get a lot harder once they enter Reception as the environment is more complex and the demands on the child higher. So if there IS a problem, having it identified before formal schooling starts is a HUGE win. From that POV, you have a good nursery who are looking out for you - the child is about to leave their provision so there's nothing in this for them.

However. You are absolutely right that you should be included and you should be getting more information. I think a lot of their cageyness is not because the process is secret/underhand, but more because they are terrified of making a diagnosis (which obviously they are not qualified to do) and can so easily end up stuck between either refusing to tell you what they think the problem is (which makes parents angry) or saying what they think the problem is (which also makes parents angry). Your issue is they are probably this defensive because they have had kids go through this process before and the parents have reacted badly - where the kid does turn out to have significant SN this is a very harrowing time for them and they're entitled to react badly ffs - and so if you go in with all guns blazing about your distrust of the process, they are likely to label you as being "in denial" and worry that you'll try to stop them getting help to your child. You'll get the most sense out of them by being terribly terribly positive and wanting to be engaged with the entire process. Stick your nose in, but with a smile on your face. They really don't have anything to hide.

Another thought - there's strong guidance in schools to say that children who have EFL (English as a Foreign Language) should NOT be defined as having SEN just because of communication issues in their second language. So you are quite right to want to treat this as a separate issue, they should know this already.

Oh, and just to say I completely agree with suggestions to talk to GP.

Schools/nurseries are very variable with their understanding of the diagnosis process and who they get involved and why. Often they make a botch of it because they are only seeing it from an educational point of view, not the whole of the child.

From a parent's point of view, the best route is to get a full developmental checkup from whoever does these things locally - it's usually a developmental paediatrician at the CDC - Children's development centre, a unit in a local hospital. Sometimes it's CAMHS who are mostly child psychiatrists. Your GP will know the local process and be able to refer to the right person: if you explain that your child has intervention at school from SaLT and OT but is still having problems and nobody is taking responsibility for a full assessment, you should get a referral. Stress she starts school in September so this is now URGENT to make sure the right support is in place when she joins, and see how fast you can get seen. With more clarity about whether there is a "real" problem - and if so, what, and what sort of intervention is recommended - you will be much better placed. Be warned though, that the timetable for assessment/diagnosis for conditions like ASD, SPD etc may be quite a long one so you will have push this along.

Children of this age behave differently when Mum is there because we make them feel safe : )

My son's difficulties are FAR more apparent with others than they are at home with me. For this reason I've asked that observations be done when I'm not around after the ed pysch did some obs with me present and then without. However I do expect a full explanation afterwards of what was observed.

Nursery and school teachers can raise concerns but cannot diagnose as they are not medically trained. In addition many developmental issues look very similar to each other when a child is young, only becoming discinct from each other as the child grows. For this reason adhd & autism disorders are often confused by lay people in the under 5's, and some visual processing difficulties (dyslexia) can't commonly be diagnosed before 7.

You have the right to ask for copies of ALL reports concerning your child. Put your request in writing and copy the letter to your GP and the SEN officer at the Education authority as soon as you can. Then book an appointment with your GP for the GP to explain to you what the reports mean. In the GP's appointment ask for a referral to the developmental peadatrician. rd3hd3 gives great advice!

It is horribly confusing & worrying when they first start assessing your child, even for those of us that are UK born. Do bear in mind that it may all come to nothing, or they may say your child is a little immature as children do grow at different rates. It may be decided she needs a little boost in learning English. On the other hand if there really is a problem it is totally unacceptable that you as a parent are left feeling excluded from the assessment process.

There is a Special Educational Needs Code of Practice which specifically says that having a first language which is different from English does not equate to a Special Educational Need.
Are there other children at the nursery with English as an additional language or is this a relatively unusual situation? It is indeed possible that her difficulties at nursery are language related, but there could be other reasons aswell. It doesn't sound as though the nursery are very good at keeping you informed.
You might not be able to attend all assessments with your child because insome situations children behave differently with a parent there. When our DS was assessed by the EPsometimes she saw just him, sometimes saw him inclass and sometimes with us, so she got a whole picture.
You are however entitled to see any reports written about your child.
At present our special needs system has threelevels, School Action, School Action Plus and Statement. The nursery should explain to you where your DS is on this scale.
You can request a free copy of the CoP reference DfES 581/2001 from DfES publications,
phone 0845 60 222 60 or email [email protected] or download from the website www.dfes.gov.uk

Oops sorry, DD not DS

It's very hard for nursery to tell you what they are thinking, because they are not qualified to dx.

Sounds to me like they have concerns about ASD. But they don't want to say it because they are not qualified to dx.

The questions they ask you are always personal. They need to be, to rule out other things.....

Keep talking to nursery, and keep trying to get her diagnosed. If school do think it's ASD you should ask the GP to refer her to a child development paedetrician.

r3dh3d, bochead, usedtobeahappycamper, Indigobell:

Thanks a lot! It is good to know that the whole process is what is usually done.

We really think that our nursery teachers are doing a great job, but we were getting frustrated about not knowing the precise diagnosis and not seeing the reports. Your replies helped us to understand better the teachers' perspective. And on Monday we are going to try to get answered as many questions as possible.

About English not being the first language: the school does have other children that did not speak English when they started. They say dd is making progress with her English, but too slowly.