9yo DS2 and school

[CouthyMowEatingBraiiiiinz]

DS2 had massive development delay when younger.

He was dxd with Hypermobility syndrome and hypotonia at 7mo.

He was dxd with speech and language delay at 4yo (was referred to SALT at 18mo but first appt wasn't till he was 4 as no SALTS available).

He was dxd with ENT issues (Auditory Processing disorder) at 4yo.

He was dxd with dyspraxia at 4yo - verbal and motor.

He was dxd with GDD when he was 18mo, I forgot that one.

He also has reports with comments like "obviously on Autistic spectrum", from SALT and Paed, but no formal Dx. (I'd eat my hat if he isn't Autistic though).

He also has encoparesis, and suffers from constipation overflow daily, despite Movicol.

He was on SA+ from preschool age. In Y3 they dropped him down to SA, despite his issues. At the end of Y3, they took him off SA too. Though he is still on what this teacher calls 'teacher support', which basically means he still gets the input he was getting on SA, but without an IEP or anything I can hold the school to or quantify.

This 'teacher support' doesn't seem to amount to much.

Fast forward to Y4...teacher complains that though he has caught up to the bottom of the year group academically (lvl 3b in Maths and 2c in Literacy at this point of Y4, his handwriting is still hovering around lvl 1b), they have to assess him Orally, and he also continuously fidgets and gets in and out if his seat.

He still doesn't have the writing slope the SenCo promised me before Reception, he still doesn't have the wrist splints the OT promised before Reception, and new issues are arising.

I have managed to self refer back to SALT, Physio and OT and am waiting for appointments.

What can I do to help him stay in his seat?

I should add that his dad has dyspraxia, Autism and ADHD, and that his toddler brother has been dxd 'hyperactive with a high probability of ADHD', and is being assessed for Autism in May next year.

Fiddle toys? School don't allow them even for those WITH a dx. School notoriously shite with SN, no opportunity to change school as no places in entire town EXCEPT for the school currently attending as this school has the bulge class.

Help?!

He is not at the levels stated by the school btw, no way in hell.

The school have form for inflating levels until Y6 SATS, at which point they I form you they can't sit as they won't achieve a level - they did it with my DD, and at least 10 other DC's with SN's that I know of. At least 10.

School shite, not concentrating, push for PROPER dx rather than all the 'little' bits?

Am requesting ADOS assessment from GP for DS2 over Christmas hols, on advice of CDC via DS3's issues.

Gah!

Need a firm dx to get help. Not got everything in this thread, need to vent and get it out and maybe see if anyone has any suggestions?

Vitamin pills? Diet? Already mostly GF/CF, due to his brother's allergies. Push for Autism & ADD/ADHD dx? More fighting?

I want it sorted before Secondary transfer. Suggestions?

i think you need to be thinking about a statement if he is behind and struggling so much. i also think you need to push for a referral re autism as well. it sounds a sthough the school are disinterested and doing the absolute minimum possible. if you get more professionals involved tehn he should go back up to school action plus. Maybe also you should push for a CAF/TAC meeting or whatever they call them in your area. secondary will be here before you know it plus with the green paper coming you really do need to consider statementing. have you spoken to parent partnership in your area or IPSEA - they can be very helpful and give some very good advice

Can never get through to IPSEA, only have a mobile and can't afford to hang on the phone waiting forever. No Parent Partnership officer, been 3 years now since we had one.

I would push for a firm DX purely for the teeth it has when it comes to services and the increased likelihood of obtaining a statement. From what I've been told, when the SEN changes to take place, children with a diagnosis will be better served than those who have obvious needs but no diagnosis to back them up.

wow - 3 years without parent partnership is pretty pants! that said mine refuses to help - thought it was just me but turns out there are others as well. yes ipsea are a nightmare to get through to but you can email them now. NAS helpline pretty good - they phone you back and also sos sen can be easier to speak to as well

Thing is, sane as my DD, I'll never even manage to get him assessed for a statement while the Primary is lying about his levels of achievement.

Looking online at level descriptors, by my reckoning, he is at about a level 1b in English, and a level 2c in Maths. Yet they keep inflating his grades when he CAN'T do the work needed to gain those levels.

They did exactly the sand thing with my DD, and she left there working on p-scales in Y6, despite them saying right up until the SATS that she 'would achieve lvl 4's in the SATS'.

My ARSE.

A week before the SATS, they asked me to keep her at home for SATS week, as it would be 'too stressful' for her. I refused, and INSISTED she sat the tests. She didn't get a level at all. School didn't like me insisting...

I have no DOUBT that they are going to do the sane with DS2, inflate his levels until right before the SATS, then ask me to keep him off during SATS week. Because they know they're lying, I know they're lying, they know that I know they're lying, but equally they know I can't afford to do anything about it!

No chance of my LA even assessing while the school are lying about his NC levels - I'm in Essex, and they have (illegal) blanket policies on levels at which point they will even ASSESS.

Can't get an EP appointment because it's the school SenCo who puts the DC's forward to see the EP, and she hates me (long story involving DD's mid-year SEN transfer here when we moved, and SenCo taking ALL of DD's help away, a complaint on her file blah blah...)

The ONLY way I will get him assessed for a statement before Secondary transfer is to pay privately for an independent EP report. I can't. I don't have the money.

Ouryve - that's what is scaring the crap out of me, Secondary transfer AFTER the changes come in, but without a firm dx.

I currently have two and 2/3 academic years to get a statement in place.

I am trying to get his dad (also VERY poor, despite working) to save for a private EP assessment and dyslexia assessment. He's talking to his Uncle to try to get somewhere.

It really will be the only way.

Socially, he will NOT cope with MS Secondary. He just won't.

I'm hoping that a firm dx for his younger brother, DS3 will get the tests done that he needs. (Currently awaiting Microarray test results on DS3 as the Paed believes he has a chromosome deletion syndrome or two, one from me and one from his dad...

When we get those results back, if they are positive for a chromosomal issue or issues, then I can get Microarray testing done on DS2.

But there's massive delays on Mucroarray test results currently, DS3's are due between January and April, but could be delayed further. And they won't test DS2 until AFTER DS3's results are back.

DS2 was only put in MS as a trial because SN schools were full as he is in a VERY large year group, biggest here in 20 years. He is still there, but mainly because the school deny all the bullying he gets, even when he needs medical treatment from GP for it and they ignore his social issues and lie about his academic issues...

He SHOULDN'T be in MS, even I can see that it's not the right place for him.

Blu tack! Bingo. That might actually work. Thank you.

Nope, no DLA. Am currently filling in the firm for DS3, as his is more clear cut as he HAS a dx of hyperactivity AND has life threatening allergies.

I'm going to try again for DLA for DS2 in the New Year, mostly because I can only deal with one bastard form at a time...

I've done mine, am doing DS3's, DS2's is next on the list, and DD after that...

How do I do it? Vats of caffeine, a very black sense of humour, occasional tears, the odd wibble in the corner when I want the world to stop so I can get a rest, and a bucketload of patience and ten tons of frustration...

If you can get his ?ASD assessed via the complex/ high-functioning social communication clinic at Great ormond Street they will also do a load of IQ, SLT testing etc as backup. Since he has diagnosed APD, which is a known asd "lookalike" that GOSH are also specialised in, it would be the best place.
GP can refer there eg for 'second opinion', and GOSH asks the local CAMHS to rubber-stamp the referral (since it's a diagnosis-only clinic and camhs will then be the ones taking over any propsed treatment plan, it's polite )

Any Kumon or similar tuition centre wanting your money will do a formal assessment of his reading/ writing/ maths and tell you how bad it really is. All you need then is an accurate classroom observation, ie someone watching him in class and noting down exactly what he does/ says, minute by minute, in detail. Anyone sensible who knows about SN and children can do useful observations. The difficulty is getting school to agree that they can observe. This is where the NHS and voluntary bodies come in handy; if you could (for example) borrow a student nurse or trainee SW to sit in DS's class and observe him for a morning, no-one feels threatened.

A proper EP will add intepretation, which does help at tribunal, but is costly. I think if you get an applicaiton for statement in, get started with some evidence against the inevitable refusal to assess, and then contact IPSEA or SOS:SEN explaining your circumstances, they would probably give useful advice, very possibly take much of your ds2's case on and perhaps even give you some of their precious pro bono expert hours.

but dla first, obviously

Just been told by GP today that he probably DOES have scoliosis, need to see the other GP 'Who knows about spines' on the 28th, and then probably a referral to a consultant about it.

The school nurse hadn't even been told about his encoparesis, that he has been medicated for for 4 years...

Is it any wonder the school don't get him to clean himself up and get changed if they aren't even passing on the info or putting it on his file?!