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Can I throw in the towel now? 1

(32 Posts)
2boysnamedR Tue 12-Jan-16 13:20:57

Just a moan. I asked ss to help me as I'm at my wits end. Ds is to young as under five.

He is dx'd with Asd totally non verbal. All services have stopped ( early years, portage, pead) and he's got no ehcp.
I have to apply for a ms school by Friday. After much soul searching we have decided ms is never going to work and I am fed up of sharing personal details with a string of strangers who never make any difference.

So we have decided that our olders boys ( shite school have appealed three times for a statement they ignore ). can have him

Why? Because all local schools are covered by the same la staff so a fresh start isn't 100% possible. He's non verbal - he will fail where ever he goes. I don't have to tell school any backstory. I can be "he is non verbal and autistic. We both know I can not get funding so I suggest you crack on. Enjoy"

I really feel I have tried so bloody hard over the last six years with his brother and now him.

I don't want to do this anymore. I want my sanity.

My non verbal kid has no chance so why do I feel guilty in just playing the la game and saying "if it's a problem for you then it's a problem for you".

Ineedmorepatience Tue 12-Jan-16 16:22:26

You feel guilty because you dont want your little one to be failed!

The system is so wrong because its setup so children have to be failed! But you already know that!

Be kind to yourself flowers

2boysnamedR Tue 12-Jan-16 16:33:13

Your right. If it has to be this way then so be it. They won't be able to say it's me being precious this time. I'm going to more elusive than snow on the surface of the moon. Nod smile and walk off

Worse case senario he ends up excluded in a pru and they will have to look back at his early years records and take it from there.

stopping thinking about it or getting angry is going to be hard.

Ineedmorepatience Tue 12-Jan-16 18:06:09

Yes it is going to be hard and it is so wrong but as you say what can you do!

So long as your little one is safe then you will just have to go with it just be mindful of safe guarding issues!

2boysnamedR Tue 12-Jan-16 19:15:18

I don't honestly think he will get past reception in ms. If there is any safeguarding issues I would take that straight to the la. They know his history, it would be them then deciding on the ehcp or lack of. Luckily there is a six foot fense all round the school and lock on main door grin they will need them

Ineedmorepatience Tue 12-Jan-16 19:45:44

I kind of want to say it serves them right but it is so wrong that you are in this situation! shock

2boysnamedR Tue 12-Jan-16 22:59:07

There is some karma in there but mostly it's practicality. I can't be in two pick ups at once. Mostly I just don't see a happy ending ending anywhere for him. But yes, I hope he makes someone's day there.

Let's see them downplay and minimise him

Msqueen33 Fri 15-Jan-16 18:23:54

Firstly hugs. I have three girls. 6,5 and 3. Middle dd has moderate autism, adhd, spd. Getting through the toddler years nearly destroyed me. My youngest daughter also has autism and is non verbal. Most days I'm just keeping it together. Have you gone for an ehcp yourself? We applied just before middle dd started school. Originally turned down and appealed.

2boysnamedR Fri 15-Jan-16 20:09:51

No not going for a ehcp for the toddler. I will be gob smacked if his nursery can't secure one.

I have decided that I will be better appealing once I can prove MS fails him ( it will there's no way he will be talking by September). He has been going to a mainstream nursery for two years. He's made no progress but has progressed at bit in his special setting. I would take him to the appeal

I found the appeal process very hard and ultimately without a funded statement. If ever appeal again I would want more than 3 weekly half hour SLT which is basically I all have to show for my appeals. It would be appeal for SN school or nothing. Contents of EHCP wise I'm not signing any draft without it being perfect.

I fear I'm being set up to see the toddler in MS but that would be a mistake for the LA as there would be no state places for him and I have been in contact with a £50,000 a year aba school. They are very keen to have him but I'm not sure I have the stomach for that fight.

zzzzz Sat 16-Jan-16 10:40:26

If apply for ehcp assessment with all your reports, expect to be refused assessment and keep it in your back pocket for whipping them with when they have to give him one....but I am a bitch and I would also collect the names and qualifications of every individual that fails him.

In the meantime as soon as I have finished my own school/ehcp hell (last push so a month ish I hope), I am planning to start a thread or possibly something a bit bigger to share what got ds talking, reading, and progressing. If we wait for these fuckers to help our children WILL become what they predict. Be brave, you are tired, it's going to be better and you are not alone.

2boysnamedR Sat 16-Jan-16 12:04:53

I just don't know what to do. The special needs school panel sits in March and I should get my result to see if we got in a few weeks before I get my mainstream result.

The thing that really worries me is that no LA EP has assessed him yet.

He has been discharged from all services too which is weird as he had everything but it all got withdrawn and now there's a nine month gap before he starts school.

At least if I knew he wasn't getting a ehcp right now I would have time to appeal one for school start but in theroy I could be doing refusal to assess, to issue and contents which took me two years for ds2.

Ideally he gets a echp I just appeal that on placement.

Years ago he would got a statement and special school no problem but in the age of cut backs a child that presents as if has brain damage could shoe horned into ms

zzzzz Sat 16-Jan-16 12:18:42

For my ds who is also an easy spot for SS, reception was fine. Yr1 not so much. Try not to panic. It doesn't have to all be sorted now. Children are children for ages and there is lots of time for mistakes and delays. I know its so horribly stressful and upsetting but the wrong school will not mean he is failed, because he has you. Do your best and then let yourself relax because you are there for the long run and you need to find a way to be happy.

Weirdly what helped me calm down was keeping a "diary" of where we were and how ds was doing. I call it a diary but really it was just photos snapped on my phone with a caption written underneath and then stuck into a word doc. Every few days I would read back to see how he was doing and then write a few more ideas about what we could do to help. Then try that and see how he progresses. It took the pressure off and gave me a way of not straining at it all the time.

Whatever happens with school find a way for you all to be happy NOW with how it is now.

As far as the being discharged thing goes, rerefer yourself for all the ones that are self referable and write to the Dr asking to be refered to the ones that need his/her referral. They will soon find you won't go away and deal with you. Ds has been discharged from SALT multiple times. He is below the bottom 0.1% for language.......who the fuck do they think should be on their books angry

2boysnamedR Sat 16-Jan-16 13:01:02

My older boy was 1% on his language and never had any SLT so I don't think they won't anyone on their books. What the NHS offer com paired to a private therapist makes you realise that NHS isn't fit for purpose. NHS SLT did the celf parts which put him at a six month delay but a month later the private SLT did the celf parts on his area of weakness and he was half his life delayed (3 years)

KeepOnKeepingOn1 Sat 16-Jan-16 15:49:20

Sometimes it can help to phone and speak to a service that has discharged your DC and asking them what their evidence of progress is. But this depends on location and therefore the local NHS provision.

I live in one county but on the border. Before 2014 DS2 was in a school in the neighbouring county and therefore seen by community paed, Salt and OT in primary heath care service of neighbouring county. They had different criteria for referral (including age - some services have started to block referral of children between the age of 9 and 11 or post 10), level of support delivered whilst a current patient and criteria for discharge (i.e. progress).

Since he has moved to an in-county school he is no longer seen by the team involved for the past 6 years but by a new team that have different referral criteria, provision for current patients and discharge criteria.

Therefore his Statement has to specify SALT and OT and pay independent therapists because the local NHS does not provide and will not provide. Despite GOSH HFA clinic requesting that local OT services accept him as a current patient (discharged as no service provided for DC of his age), local services refused referral. Since when could referral be refused when it comes from a 'centre of national excellence'?

DS2 was discharged from all services (not because he had made progress) when I applied for Assessment and the LA were keen to point out on numerous occasions that he had been discharged. But at the same time, being a current patient brings fuck all advantage! Lack of progress whilst a current patient is reinterpreted that nothing would work and so there is no point increasing support. Catch 22.

flowers I can understand why you feel as you do. sad I can't be guilt tripped into thinking that there are 'worse' DC than DS2 - do you mean DS1 then?

MeirAya Sat 16-Jan-16 18:14:27

Most referrals get rejected because local services like OT provide the services they are "commissioned" to do (ie what their contract says they are being paid for).

They can be commissioned by the local NHS, by the local council, or by the individual school. And most services (take your pick- OT, SLT, physio, ed psych, LA advisory teachers, outreach, CAMHS) refuse anything that isn't funded/contracted.

That doesn't bother me (much). What really winds me up is that they usually pretend it isn't happening.

Dear Dr Out-Of-Area

Thank you for your detailed referral of this child who I agree needs my team's assessment and input.

Unfortunately we cannot see MiniPerson. This is because he is 9 and the CCG and LA are in a Mexican standoff over who should fund OT provision for mainstream key stage 2 children.

Should you, or MiniPerson's parents wish to query this further, the relevant senior managers are Mr Beetle (LA address) and Mrs Juice (CCG address)
love&hugs from all the OTs here

MeirAya Sat 16-Jan-16 18:15:23

See. It's easy

Noeuf Sat 16-Jan-16 18:20:07

You say the panel sits and you'll find out if he has a place at special school? But he doesn't have an EHCP? I'm a bit confused - have you applied for one, and are expecting the decision before the panel sit?

2boysnamedR Sat 16-Jan-16 18:34:17

It's all about weird here in my county. You do not need a ehcp to get into a special needs nursery ( of which there are only a few). You get into them via a panel.
When the kids at these nursery then need to move on there is another panel.
You can't get into a special needs school without a ehcp BUT the county are still in a flap moving from statements to echp so very far behind ( sad they seem to be for the last few years). So there will be no ehcp by panel time. But the panel will be same evil bunch of people who will sit on the ehcp panel. So in theroy they know who is getting what.
Saying that he's not seen in EP since he was two so has no proven learning difficulties. It's a mess.

Noeuf Sat 16-Jan-16 18:56:27

Oh what a mess. I can understand the nursery but not the school. Or do you mean that they may allocate a place because the ehcp is in progress and it should be completed by September.

2boysnamedR Sat 16-Jan-16 19:27:34

Yes they can allocate the place based on the ehcp being issued before school starting. I was told to view SN schools, I was asked at one school if ds had a ehcp. When I said no she said there was no point viewing! The finance manager then explained the situation I'm in is common - but other under fours in county do have EHCPs! So it's not one rule across county

Noeuf Sat 16-Jan-16 19:36:27

So you may have a special school place for him? I'd probably wait and then appeal (on whatever decision) and possibly depending on result wait and see what evidence mainstream could offer
Does he not access salt? No therapy to address his lack of speech?

2boysnamedR Sat 16-Jan-16 20:15:24

I have expressed my preference for two SN schools for the panel to consider but there is no gaurantee. They are talking about a speech unit in mainstream too.

He has no therapy but he does have a SLT in house to assess as needed and all the staff are trained up for non verbal asd kids. He can only have SLT if it's written into a ehcp. There's nothing outside of school on the NHS because he is in a Sen nursery. You automatically get excluded from services! Also all NHS therapy stops at year 1 for mainstream

2boysnamedR Sat 16-Jan-16 20:21:06

I waited 18 months to get 4 half hour speech sessions held in nursery. They explained about the high attention bucket and now and next board. That was it!

He makes and holds eye contact now so he's moved on and there's nothing new for me to try. I have paid to learn Makaton after PECs didn't work.

The local asd school said they never use MAkaton so I have told the panel he can't go there. They said no one uses Makaton in the outside world. But I never see people using pecs either. It's just theroy you could hand a card over to anyone but he won't go off to get a card, he always has his hands. He can't conform to fit pecs as much as he can't stop having asd!

Noeuf Sat 16-Jan-16 20:39:44

That's true. Are you waiting on an agreement to assess?

2boysnamedR Sat 16-Jan-16 23:08:22

No we have nothing concrete at all that he's being assessed or the LA are doing his ehcp. Only people's word that no child has ever left his setting and gone into mainstream. I was told one boy went to mainstream last year but the parents chose that against advise ( but in fact it worked out ok). I have a very strained relationship with the LA and it's no secret. I'm being told that this child is very high needs and it's going to be ok this time, he's in the system early etc. Everyone is saying I need to trust that he will get a ehcp. I do trust his nursery. I can't trust the LA as it would be like repeatedly taking in a adulterous man. Nothing would ever make me trust my LA. But I do trust the nursery. However it's not the nursery holding the cards.
All reports have worded so that he needs very small classes, very high input etc. The SLT said she can't word it to say "this child needs a special school" but she can word it so that it excludes mainstream by default. BUT..... The LA could just leave all that out.
I really don't want to appeal again. Me and dh have even planned what we would do if he gets excluded from MS. If he gets sent to a PRU. That's how much faith I have of this working out.

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