Parents/carers of SN children: get dx/statement AEAP

[specialmusic]

Having worked as a teacher for over 15 years, 6+ in SEN education reading these threads makes me painfully aware of how hard it must be to get your child the best help if you are not in education and do not understand how it all works. Because of this I have decided to summarise the main points:

1. Diagnosis
Get a DX as soon as you suspect there is something wrong with your child. Push for tests and assessments. You are the parent and you know your child best. If you feel there is something wrong, probably there is something wrong. It won't go away if you ignore it. But valuable time will pass without specialist help. The sooner you get specialist help the less the damage. Don't get fended off by things like "autism cannot be diagnosed this early". It can be diagnosed from 18 months on. Specific learning difficulties (like dyslexia) can be diagnosed before school-age (reading is just the manifestation of a problem). A diagnosis can only be made by a health professional. Someone who is registered with the HPC. A doctor or a psychologist. It cannot be made by the school, not the SENCO and not even the EdPsych (even though the EdPsych will be registered with the HPC). If assessment is arranged via the LA or the GP, sometimes you have to wait months. If you can, go private. If you cannot afford it, look for funding (e.g. a charity). The most important thing is to get a dx and to get it as early as possible.

2. Statement
A statement is given by a panel, which is a multidisciplinary board. It will have an EdPsych, the SENCO and other professionals. LAs and schools are trying to decrease the number of statements, so they will try to tell you that no statement is needed. This is because until there is no statement, all help is essentially a goodwill gesture and it can be withdrawn at any time. Once there is a statement, help for your child is a commitment. It is you who has to push for a statement. The LA and the school does not want statements. Statementing is a long process and you need a dx for it. This is why it is important to get a dx as soon as possible.

3.SENCOs
Schools have to have a SENCO. A SENCO is a teacher (sometimes a TA) who is responsible for SEN kids in the school. Some of them are dedicated and well trained, but no SENCO is a specialist in all disabilities that can be present in a school (from sensory impairment through learning difficulties to ASD and ADHD), so don't expect the SENCO to be a specialist in the disability your child has. Also because having a SENCO is a legal obligation, the role is sometimes assigned randomly to teachers who have neither inclinations nor training for it and who do not get extra time off teaching duties for it. This is especially true in MS primaries.

4. Special Schools
More disabled children thrive in a special school than in mainstream. It depends a lot on the disability, of course, but specialist help early on is gold dust. Do not put your disabled child into a mainstream school just because you, as a parent have the right and because this way the disability can be "pretended away". I understand this may be difficult but again: early specialist help and the right environment is more valuable than being able to say that your child goes to Cherry Tree Primary School, just like everyone else.

5. Don't take "NO" for an answer
"No" means less work for schools, LAs, etc. But it is your child who needs help -push for it.

Good advice generally specialmusic, but you are definitely wrong on at least one point. You do not need a diagnosis to get a statement.

Do not wait for a DX, your child is supposed to be assessed on need not on diagnosis, although a DX will help with getting problems taken seriously.

It is a matter of opinion only that SS are the best places for children with SEN.

My DS with obvious ASD is actually better off in MS primary with academically equivalent peers and good social behavioural role models.

SPECIALMUSIC realy glad i saw ur post, i am having a right time with the dx for my ds, he has seen paed, who reffered ds for audio test and fragile x, which came back fine, he then had a ed pyschs done at his nursery and this came back with everything i had issues with ds, handflapping, lack of eye contact, lying face down rocking his body from side to side, fear of loud noises, lack of empathy and social skills, my ds is 5 in sept when he will start mainstream school. He still wets the bed and will not feed himself, i have to feed him every mealtime, and he will only eat certain foods, he will not walk far and wants to be carried, he does not like me hugging or kissing him and he tells me he dosnt like doing this cos he does not like me, he has very repetative behaviour, he will watch the same part of a cartoon 30 times over, hand flapping vigarously, he has now just started to overlap his fingers to, he has been put on school action plus cos of ed pyschs report, and now reffered to SALT on 19 may, I saw in his file a letter from paed saying he had develpoment delay and significant characteristic/features of communication dis i.e asperges, this was sent to nursery and my GP and not to me, if i hadnt seen this in his file i would never have known paed had put this, i am not happy, I have now had to go back to GP and ask to be rereffered back to paed all over again! I feel as though i having to start all over again, the letter from paed was typed up June last year! any advice please :(

There are quite limited places at SS too catering to quite specific needs. My dd has SEN but is academically bright her HT says outstanding. A SS catering for p levels when dd was a good level 3 wouldn't have been a suitable placement. Far better to look at all schools and choose the one most able to meet a child's needs remembering it may not be local nor OFSTED outstanding.
I think you might also find that parents are always fighting but for many the professionals procrastinate, backtrack, delay and can be ignorant of the issues and so they not the parents are the reason for late dx and SA.
Personally I have had to educate SENCo's, teachers, LSA'S and HT's, I have chased LEAs reminding them of their legal obligation when they are either evasive or ignorant. I have given information to GP's and HV's that have little knowledge and all the while meeting the needs of two children with disabilities.
Boards like this mean that other parents can benefit from some of us who are long in the tooth to such battles (13 plus years down the line) and avoid the pitfalls because you can be damned sure the professionals will dilly dally before giving information that might cost time and resources.

I agree with EllenJane1 generally good advice but one thing i would add is that it is very much a post code lottery.

We have lived in 4 different countries and still do not have a diagnosis for my son (he is 11 now). Like most children with complex problems he is a bit like a Ven diagram. Lots of circles of different conditions overlapping and he is slap bang in the centre of them all.

I really feel a diagnosis is not required but as a Health professional myself it does make life a lot easier with one but that diagnosis needs to be the correct one.

Would you want a cancer diagnosis just so you got better treatment for your broken leg.

specialmusic, I think the thread is a good idea and have recently been thinking myself about how we definitely need some sort of sticky thread that contains all the links and basics about the SEN system for people who really need help but don't know where to turn for advice.

As Hethbell said though, it varies widely from county to county and each LEA will have a different name for different roles and services, which makes it more complex to offer advice.

That said things I've thought would be useful on a sticky thread would be things like links to:

• Basic clear information about how the system 'should' work, such as the DirectGov SEN pages

• A downloadable version of the SENCOP

• A downloadable version of the Disability Act Not sure if this is the latest version - hopefully someone else will know.

• Information on the www.direct.gov.uk/en/DisabledPeople/RightsAndObligations/DisabilityRights/DG_4001068 Disability Equality Act 2010]]

• Support sites and forums etc for specific disabilities eg NAS. Obviously these would be many and varied and would need to be recommended by a parent who has experience of using them themselves.

I also though it might be useful to compile a list of 'quotes' from people who have been there before - a sort of top tips or 'if you could offer one single piece of advice' type of thing.

I don't have a clue how we would go about organising it. I know there have been thread in the past where its been tried, but then they've disappeared into the mists of time.

I guess it would also need reviewing every few months to make sure it always contains the most up to date information - not sure how that would work.

I definitely understand where you are coming from though - it breaks my heart every single time I read yet another thread from a parent or carer who is being misinformed, fobbed off and given the run around by the professionals.

Doh!

Of course links to

• IPSEA

• [[http://www.sossen.org.uk/ SOS!SEN

• The Advisory Centre for Education

and other similar organisations would also be a must.

All very good advice. Would also add to NEVER think the LEA (or associated professionals )have your child's interests at heart, IME they are just looking for the cheapest option.

This is a fantastic thread. I think it should be stickied.

EllenJane1: You are right in saying that a dx is not necessarily needed for a statement but in the last LA where I worked the panel would not touch kids without it.

It is a matter of opinion only that SS are the best places for children with SEN.
I'm afraid I disagree with this point. Partly because I have worked as a teacher for so long, both in mainstream and in special education. But also because for example in my country of origin, Hungary, where all children with SLD are educated in special schools we have higher literacy rates amongst the Down Syndrome population than certain areas of the UK has among the general (non-learning-disabled) population. That's because they are taught reading and writing with specific methods different from mainstream, by teachers who have specifically been trained for this as part of a very specifically designed curriculum. So I know what specialist help can do. Another example is CP: sure that a kid with athetoid CP could attend mainstream school no problem - but in my opinion if he attends conductive education 8 hours a day 5 days a week focusing on nothing else, it will probably get him out of wheelchair and make him capable of doing things like filling or holding a kettle. However, this can only be done before a certain age. So imho specialist help early on for this child is more important - he can catch up on his GCSEs any time in life. Yet another example is visual training. Children with certain types of visual impairment who have some residual vision left can be put through visual brain training, which is based on the pre-9 plasticity of the brain and could improve the child's vision to such extent that they can walk in the street unattended or will be able to read signs like EXIT, etc. This, again, is a very intensive programme and does not fit in with any mainstream education, i.e. it is not something you do 2 hrs every day after school. It requires very intensive work and trained specialists. But if I had a child like this I would much rather he went through this rather than attend a mainstream primary school with a TA to help him.

>asdx2: There are quite limited places at SS too catering to quite specific needs
Where I live there is a school where conductive education is done, another one mainly for deaf children; another one specifically for ASD (this one from nursery to 19, I think). There is a school specifically for kids with MLD and another one for ESBD. There are also "general" special schools but if you live here you know which one is best for a PMLD kid and which one will teach your Down's Syndrome kid life skills best.

Specialmusic, I think your last post highlights the problem with us giving out generic advice though. Each case is so individual, from what difficulties the child has, through to which LEA and PCT they come under.

In the area I live in SSs are few and far between, the two schols that we have for children with ASD are aimed towards low functioning children and this is something that the professionals we work with will tell you. Not only are these schools totally unsuitable for my ds (who has AS), there would not be a cat in hell's chance of him getting a place at any of them anyway, so we have to fight tooth and nail for support in mainstream, as there's no other option available to us.

It sounds like the area you live in is well supported and it would be lovely if we all had the same services and opportunites, but I'm sorry to say we don't.

I also think that saying SSs are the best place for all children with SENs, doesn't take into account the vast spectrum of problems involved - some of which may not need the services an SS would provide.

What I think this thread highlights more than anything, is that SEN is such a complex area that a one size fits all plan or service could never hope to cover - hence all the problems arising from the Government's Green Paper.

I really appreciate what you are trying to do here and I think we are all/both coming from the same place of concern and wanting to help others using the knowledge and skills we have gained, either through being the parent of a child with SNs or from working with children with SNs.

I wish I had the answer. All I know is that for the most part the system we have sure 'aint working and if it was, we wouldn't need to be having this discussion.

I have nothing against SS in fact I am in the middle of a fight to get my ds into an Independent SS out of county for post sixteen. I think a lot depends on the provision available in your area.
In our LEA we have two maintained generic SS catering for children with a wide range of difficulties from Down's Syndrome to CP to ASD to MLD. Ability wise levels go from P scales to the most able at yr 6 level 2.
We have one ESBD school commonly known as the LEA dumping ground for any child who can't be contained elsewhere and whose parents haven't done their homework and fought like merry hell to keep their child out. Again highest academic levels are level 2/3.
Then we have an ASD SS school but only for children with SLD alongside the dx and that sums up the provision.
We have two secondary ASD units attached to mainstream taking just two pupils per year. Ds has one of the first two places available as they only opened the year he went to Secondary and he travels 30 miles each way for the privilege.
There is also one primary ASD unit with plans for an additional one if the demise school building programme hasn't scuppered the plans for the new school building it was planned for .
For children such as mine who don't fit anywhere because academically they are top end mainstream (dd is apparently exceptional according to HT) but with moderate or moderate to severe autism there really is very little provision in SS unless you are prepared to go to Tribunal for Independent SS.
I am yet again locked in battle with the LEA to get the provision ds needs as I did five years ago because the LEA offer the bare minimum they can get away with.

I agree with many of the points special music has made, but I still feel the emphasis on SS being the 'best option' is still a little 'skewed'. You do say it depends on the disability, but I have to say I have heard many adults with physical disabilities have said actually getting a good education, was what gave them independance and power and freedom more than not being in a wheelchair, or lifting a kettle would... 'getting your GSCEs later' is not as easy as it sounds...

Having an accessible environment and proper support can make this possible.

Please don't hear what I am not saying... IYSWIM, I know SS is right for many kids, (not mine, at the moment, this may change as we get to secondary school.) but the important thing is finding the right place, asking the questions getting a feel of the place, doing the research.
(The school with the specialist unit, we were considering was when we looked into it (IMO) crap!. Turns out the local primary, in old victorian building, has turned out to be fantastic, with staff learning to sign, using it with all the kids, and looking to give ds what he needs to thrive and develop...

I think not making assumptions is important too..

To warn you, I'm having a bit of a rant here!

specialmusic, one in 100 children is estimated to be on the autism spectrum, there are not enough SS places for all those children, and little provision for those with average and above intelligence. There are many, many children with disabilities who are not SLD or PMLD, as I'm sure you know.

'It is a matter of opinion only that SS are the best places for children with SEN.' was my quote.
'I'm afraid I disagree with this point.' you say.

I'm sorry, but it is merely your opinion that SS are better for all children with disabilities, how can it be otherwise? You can disagree with my opinion but you cannot assert that your opinion is the only correct one. You may feel that in your experience that is the case, but there are many parents and educators who would disagree with you. You have a right to your opinion, you do not have the right to tell me my opinion is wrong. I did not say you were wrong on this matter, I would not be so rude, I merely said that it was a matter of opinion. Please afford me the same courtesy. Please don't generalise in such an unnecessary fashion.

You were, in fact, wrong to state categorically that a DX is necessary to obtain a statement. That really is a fact of law, not an opinion. I'm sorry if that upset you.

I am sorry, but you have hit a nerve. There is no special school in my county that I feel is appropriate for my DS. There is no special school for MLD at all, and my DS wouldn't even fit into a school for MLD. He doesn't have MLD. That is very common around the country. Your county sounds rather like an exception. There is no ASD school, no hearing impaired school, no Deaf school in my county. There are some special units attached to MS schools, but not for ASD. There are 4 special schools for children with SLD and PMLD, and 3 for ESBD. The 2 that were for MLD have closed. I visited them when they were still open and concluded that my DS would be better off in MS at that time.

My DS went to a fantastic early special school for children up to reception age in my town, where I still occasionally work, and where I was a governor for 3 years. I helped fight against the LA in that time to keep this wonderful special school open, so I am not anti-special school, by any means.

I do think Special Music that you seem to be adopting the one size fits all approach that parents with the special knowledge of their particular child know is actually a load of old tosh tbh.
I believe the school dd attends a mainstream school is the right school for her, she is happy and thriving making fantastic progress across the board. Why should her academic abilities be put on a back burner so that a SS school can teach her life skills? As it is her school OFSTED rated outstanding for SEN provision and they cater for the autism alongside brilliantly.
Ds has the highest level of maintained provision in our LEA for any child with ASD who doesn't have learning difficulties. His place in the unit comes with ft 1 to 1 support which according to LEA is unheard of but I secured that for him by being prepared to go to Tribunal (LEA backed down 2 days before) There is no higher provision available hence the fight for Independent out of County provision.
An awful lot of parents on these boards have "been there, done that and bought the t shirt" and whilst we obviously value your input it's pretty condescending to assume that your opinion because of your professional experience is the right one tbh.

I think it's great that someone has started this thread. My opinion? Best thing I ever did was get a DX for my DS. Once we had it, I asked the question: should we get him statemented? HT said 'he's not bad enough', Senco said 'LEA are only statementing excluded children', EdPsyc said ' no need, he'll be fine'. My friends at ParentPartnership said 'ignore the lot of them, go for it' . we went for it and a statement has been awarded. The DX was the crux.

It was this phrase that really put my back up.

Do not put your disabled child into a mainstream school just because you, as a parent have the right and because this way the disability can be "pretended away".

That was actually pretty patronising and hurtful.

Definitely, 8oxoffrogs, I would always encourage parents to get a DX because it can be enormously helpful, both to open doors to provision and to enable you as a parent to investigate methods of intervention.

Sometime DX can take years, especially if your DC is borderline between many disorders. That musn't put you off getting the appropriate provision in place for your child at school. A DX makes it much easier, tis all.

But is your child at special school Boxoffrogs? because my only gripe with SM's posts are that she advises that special schools are the only suitable placement for SEN children.
FWIW my two started the statementing process before dx but both had statements and dx before nursery ds at 3.3 and dd at 2.10, it was the need rather than the dx that started the process aided by one incredibly determined and pushy mother

That phrase is inappropriate Ellenjane but I would have found the general advice on special schools really helpful for my child when she was starting school.

8oxoffrogs, you were really lucky to have a PP that gave decent advice because for many areas they are totally useless.

Apologies if I have upset anyone.

Sorry if I got all ranty, specialmusic. We really need sympathetic professionals on here as well as knowledgable mums who have also got great experience and lots of empathy because they have been there and lots of differing viewpoints, as well.

Tell you what, I'll agree to differ on that SS point.

Thank you for the original thread, we have been discussing doing something like this on a sticky, recently. It would be very useful, but there is also a need for personal, specific advice as well as general advice. There is a lot of general advice already on the mumsnet website about SN and SEN.

No offence taken here specialmusic I'm ranty myself and you touched a nerve I suppose. A professional and a new poster being quite emphatic that her opinion was superior to the opinions of parents whose experience was nothing like your opinion I suppose is something we've all had happen at one time or another. Unfortunately for you, you got the brunt of my frustration today,sorry for that.
From your name can I assume you do music therapy or am I off the mark there?

Hi mind if I join,had another bad day with ms school. Had another dirty nappy given to me to take home as school still hav nt sorted out a special bin to put them in dd has been there since Jan.
Have had lots of other issues as well and just dont know if ms is right for dd but have no other options as the sn school isnt suitable either.
Seems reading this thread that im not alone.
Thankyou for starting this one.

An unmumsnetty hug happyday. My dd is happy in her school which is mainstream and in fact toilet trained her but it's not the local one and we have to travel to get there. Are there other options for you? Is there an outreach service that can give input? Any professionals involved that would fight your corner? IPSEA and SOSSEN are great for giving you support and advice on how to get the school to meet a child's needs and the options available if they don't.

It's interesting special music as I would argue that the provision in that part of the world is light years ahead for the teaching of MANY types of disability. To teach special needs in E. Europe, you need much more training for many more years than a standard teacher and to become a real specialist in a specific disability, much like our hospital consultants do over here. These teachers are also very highly regarded socially.

In the UK those who spend the most time with our kids - the humble teaching assistant are often the least experienced or well qualified of the workforce yet are entrusted with the most vulnerable of all our children. In addition a suitable special school is no longer even a choice for parents as the last government closed so many of them down!!!!! This drives my Mum, an ex- SEN teacher herself, with a good 4 decades experience under her belt potty!

Would I like my boy to go to a school where the teaching and support staff specialised in asd/sensory issues for kids with a high intellect - yah bet I would!!!! Have I looked around to see if such a place exists within reasonable travelling distance - of course! Sadly there is no such place and my child has a choice between mainstream and a pupil referral unit, (I'm sure you know what those are!).

I'm 3 years into a fight for a definitive diagnosis and he's still being "assessed". Not helped, or given therapy, but under assessment and his case is far from a rare one.

He does however have a statement because I'm not a patient lady, looked up the law and realised a firm diagnosis wasn't needed. However this statement needs "tweaking" via a tribunal. I estimate that the timescale between my running out of patience with the school/diagnostic team and getting a statement of his needs that is fit for purpose will take 12 -18 months. Again - this is far from a rare event, even when parents are very proactive.

There is also a danger in being " too proactive" as a parent in that you can antagonise the very professional groups whose help you so desperately need. It's a fine line to tread, especially as attitudes and provision available vary so much across the country.