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 This is because until there is no statement, all help is essentially a goodwill gesture and it can be withdrawn at any time.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.

ASDX2
Thanks for that. My dd is happy at school, but I feel they are failing her and dont care enough about her special needs.
I have spoken to school liason and she definatly says that the sn school is not suitable for dd OT said the same. She is so behind though, she cannot say more than twenty words still in nappies very limited in what she eats so I collect her for lunch. She has hypotonia and many more difficulties.
Had mri has got some brain scarring but still no dx.
On a brighter note she is loving funny seems to understand most things makes friends and makes me laugh as much as cry.

I am pleased your dd is happy in ms and I think I will perhaps have to start looking around for another ms that is more sn friendly .

Bochead have you looked at Independent schools, ds has spent the last five units at an ASD unit attached to an outstanding mainstream school which met his needs intellectually and for the autism. Anxiety and his deteriorating mental health means it's no longer meeting his needs so I'm on the way to Tribunal for Ind SS now but would say that the unit has been exceptional in it's provision for ds who is very bright but moderately (more like severe at present tbh) autistic. Is there similar provision in your area?

Happy what does the ed psych say? as really the ed psych is the opinion that counts tbh. If she isn't fully included in all aspects at that school and that includes having lunch there then I would say the school isn't meeting her needs. Is she statemented? Why isn't the support there for her to eat in school? A child in dd's school has similar issues with food, there is a child who is tube fed and a child who is spoon fed but they are all in school with the support they need for lunchtime because they are entitled to the same opportunities as every other child there. To do otherwise is in contravention of the Disability Discrimination (Equality) Act.

asd2 - there's an independent school that's willing & able to take my son that would be ideal for him 1/2 an hour from me. Fees are £800 a month. My chance of getting the lea to pay for this rather than a pru? probably close to zero having spoken to a few well respected sen legal eagles who are familiar with my lea recently. It's beyond frustrating, and triggered the balance on my choice to try and sell up and move ths year.

Thank you, EllenJane and asdx2.

>asdx2: From your name can I assume you do music therapy
Yes. I left education to focus entirely on what I believe is a marvellous tool to help children, especially those who are on the spectrum and especially in the area of communication and dealing with frustration/change. If you are interested, more info at www.specialmusic.co.uk

Dd loves music and has an incredible repertoire of songs. Before she could speak and was entirely echolalic she could sing at perfect pitch any song she had heard She loved the radio programme "Songs from the Sixties" so had quite a varied repertoire. She still sings but lost the perfect pitch when she gained her own voice.

>bochead: 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.
In Hungary SEN teacher training goes on at a university college ("Barczi") in the capital and you can teach SEN children only if you have a degree from this college. It takes 4 years full-time (meaning you attend lectures, seminars and practicals between 8.am. and 5 p.m. every day and then go to the library to study) to do a degree and the first two years most of your studies are along the lines of pathology, physiology, patophysiology, neurology, psychometrics, developmental psychology and psychiatry. You go to autopsies, learn everything in Latin, much like doctors here. In the last two years you specialise in one or two kinds of disability. The degree you obtain is absolutely useless for anything else than working with kids with those disabilities, which means you have to be very committed from the start and you have to be sure that this is what you want to do because otherwise it's 4 years completely wasted. Despite this the university college is several times oversubscribed and you have to pass very tough entrance exams to get in. (I must also add that there are no tuition fees in Hungary for your first degree.) The "end result" is a professional called "SEN Educator", which is a profession completely separate from being a MS teacher with no interchangeability at all. During the course of my training I was taught to read and understand all medical paperwork; I can read EEG printouts, skeletal anomalies on X-rays, blood results for PKU. I am not saying the training is perfect but I am proud that I have a degree from there. :)

That sounds incredible specialmusic, especially when you compare it to the fact that, even in some special schools in the UK, many of the staff have no specific SEN qualifications.

I dream of somebody with that amount of knowledge, experience and most of all, caring and dedication being involved in my child's education.

Oh I forfot to say, my ds actively hated having to play an instrument as part of the schools enrichment programme last year - he was allocated a viola and did his best to avoid it for the whole year!

However, since he was tiny, listening to music has been the one thing that has consistently moved his emotions. I remember when he was about two and we were out shopping, there was a busker playing a really sad and evocative piece of music on the violin and ds suddenly started sobbing as if he had a broken heart. All he could tell us was that the music was making him sad. Its was because of that incident that I realised that he does have empathy, he just can't read other people to know when he needs to use it. If you do manage to 'touch' his emotions, he has empathy by the bucketload and he hates other people to be unhappy.

Interestingly, he has always preferred not to listen to music. I think this is because it connects him with his emotions on a level he's not able to handle, so it makes him feel out of control.

He has improved - he likes a bit of Elvis these days (my fault) - but only the 'happy songs' and his friend likes Michael Jackson, so he purports to like him too, although in reality he's only ever heard one album at his friends birthday party. Other than that he will only listen to Irish Folk and again - only the 'happy songs'. I used to sing Nancy Spain as part of his bedtime wind down routine, always had, right from when he was newborn, but suddenly, one night when he was about five, he burst into tears and between sobs, said 'please don't sing that one anymore Mummy its too sad'.

I often think if I could work out how to do it, music could be a valuable tool for helping him get in touch with and learn to handle his emotions (emotional stability and control is a big problem for him), but I haven't a clue how to go about it and wouldn't want to risk making things worse, iyswim.

Listening to music is part of "receptive music therapy", and most people "medicate themselves" intuitively this way, mostly choosig the music accoding to their mood, sometimes consciously, sometimes unconsciously. Some try it the other way round, too, i.e. putting on something to change their moods, but that's more tricky, as we all know that when you are stressed, simply putting on pan pipes or "whale music" won't take the stress away (for most people anyway).

What I do is very different because we don't actually play music when we play music with my clients :) . When I work with kids with ASD or LD I do things like creating dialogue, question/answer sequences, shared playing. This develops the underlying skills of communication. For example if you reflect at how we talk to each other you will notice that when someone speaks, they do not stare at the other person continuously, but they always make eye contact just when they finish, to signal "I've finished, now it's your turn". Someone with ASD may actually verbalise this thus avoiding to learn this skill but with music there is no other way, i.e. you have to look at the other person to keep up the dialogue. There are lots of things and skills like this and through music you learn it kind of "painlessly" :)

>moosemama:my ds actively hated having to play an instrument as part

of the schools enrichment programme last year - he was allocated a viola
I cannot for the life of me think of a reason why a) he was allocated an instrument instead of being offered to choose one and b) why on earth a child would be given a bowed string instrument, which takes about a year of diligent practice before the sound is purely bearable. The trick is to use high quality professional tuned and untuned percussion which, of course, is not easy given that a diatonic bass metallophone costs in the region of £600. A much cheaper option is to get an upright piano, sometimes you can even get them free through house clearances or on eBay/AdTrader. However, pianos must be regularly tuned and you must also make sure that the cover lock works (partly because kids jam their fingers but also because it is better if it is a "special time" and the child has to ask for it).

>moosemama: I could work out how to do it, music could be a valuable

tool for helping him
There is an abundance of books on Music Therapy on Amazon and sometimes there are short courses as well, but it is sort of quite complex, too. There are several models ("schools") of MT and also music therapists usually have 4-6+ years of university level training before they are allowed to practise.

All the children had to play a string instrument and I think it was based on hand and arm size rather than anything else. He could actually play quite well by the end of the year, despite never once picking it up to practise at home, but had absolutely zero interest. He's always been the same, we've always had a big basket containing various basic instruments, drums, maracas, shakers, whistles, recorders, a ukelele, triangles, bells, xylophone etc. Both my other two dcs love it and have always chosen to get them out and play with them, ds1 actively avoids it. The other two adore their grandfather's keyboard and spend hours messing around with it - ds1 - zero interest again.

I was just thinking, I wonder if its got anything to do with sound sensitivity as well as the emotional aspect? We were unaware he had any sound sensitivities - other than not liking loud bangs - until it was noticed by the Ed Psych and ASD team during classroom observations at school. In addition, on once occasion, he was doing an exercise with the EP that he was fully engaged with and enjoying, when some music started up in the adjacent school hall and he completely zoned out, she couldn't get his attention again until it stopped, so much so, she thought he might have had an absence seizure. Same thing happened on a couple of other occasions, as the foundation stage were practising their Christmas play.

I wasn't thinking I could do any sort of music therapy with him really, I totally understand you would need to be an expert to attempt it. I was more wondering if, by gently exposing him to music of different moods etc on a more regular basis, he might eventually become less resistant and if he did want to discuss how the music makes him feel, it might be a good thing for us to talk about, especially as he is already doing some work on emotional awareness with his ASD Support Teacher.

Not a SS, a 'small' Primary (approx 140). DS has Aspergers and is bright as a button, but very complex and so therefore misunderstood by school. DX was important to stop him being outside the HT office every day, and to get the support he needed to fulfill his potential.

This has got fascinating...

ds has just started music sessions with music bod... (I'm not sure her background) but she seems to be able to play everything... (and the room is full of instruments! even ones Iv'e never heard of!)

She has lots of ASD clients as well as other disabilities,

I was really thrilled second session ds was tinkling around one end of the piano and she was playing the other end, kinda filling in the gaps (Im not musical, Im sure you can tell ) and they played together for quite a while, (for him anyway) .

He loved playing the little accordian type thing, and liked the drums and the thing that makes notes when you break the beam.

Already he is coping with her singing, (only his hands loosely on ears not wanting mine too.)

Its great...

...oh, and I realise how VERY lucky we were to have a fantastic ParentPartnership. They honestly could not have been more helpful, but I know from friends and family that this isn't always the case.

I think PP varies hugely from area to area. I know I spoke to them years ago and they advised that I should be prepared to lose some of the support hours because 1 to 1 for the duration of the day was "unusual" Needless to say I declined their support and of course ds kept the 1 to 1.
This time round in the latest battle I have a worker who is first class not least because she has a son in the very school that I am fighting for and has done the process herself.