Where do we go from here?

[NatalieJane]

Back story is here for anyone who has the time(!) to sum up:

HV suspected DS2, (then) 3yo, may have ASD, she referred to Portage (that was then pulled when he started nursery), Ed Pysche, SALT and the Paed.

Paed saw him and referred to OT, Psychiatrist, and to have his hearing and sight checked, more to rule out any problems rather than that we had any concerns.

Nursery say they don't think he has anything going on except problems with speech and language.

Paed didn't actually say it in words but led us to believe she suspected ASD as well.

Ed Pysche said she thought he possibly has a speech disorder, and something else, but not ASD.

DS2 had his first SALT assessment on Wednesday this week. She has diagnosed a speech disorder, put him on a waiting list that could take "days, weeks, months, or years", she didn't pick up on anything else until I told her about what the others thought.

HV came yesterday, declared that he is a different little boy to the one she saw in October, said he is basically attention seeking and put it all back on us saying we need to make use of one warning, 'thinking time', and when and thens. She is coming back in two weeks to see "if we have put her advice in place" note: NOT to see how DS2 is. And she thinks he has a sleeping disorder, she is going to look to see if there is a sleep clinic, but if there isn't, that's it.

Something has gone on with the referral to the Psychiatrist, I am 100% sure the Paed said Psychiatrist, because the night before DS2 had had a very scary 'episode' and when she said Psychiatrist alarm bells rang off in my head wondering what on earth she thought going on. Now the HV is saying that the Paed must have meant she'd refer him to the Ed Psyche, so I said that the HV had already refered to the EP, HV said she didn't. On the EP's report it says he was referred to her by the HV. Following?!

So basically, in another, much shorter nutshell, we have been ran around in rings, not knowing what the hell is going with him, not knowing how to help him ourselves, and now we've been left to put this 'advice' into practise, we've no more appointments for him, no one else to ask anything of, everyone seems to have washed their hands of him because, it seems, there is something more complex than a 'simple' diagnosis.

I am absolutely livid, and completely heart broken for him, he is such a gorgeous little boy, he is funny and cheeky and cute, makes us laugh everyday, but he has all this 'stuff' going on in his head, and no one is helping him. I don't know what to do?

Have you got any charities near you that can support you and offer. Advice? I now get help from 'kids' but my health visitor pushed hard for us to get the correct support. Even with all that though i still remember my first paed appt when he wouldn't take me seriously about his behavior untill he realised Im a primary school teacher and then it was all smiles and 'what else have u noticed' grrrrr

it did make me angry, you don't have to be a teacher to know ur kid

It is hard enough to deal with the every day stuff and all the difficulties of getting the help your DS needs without the unhelpful attitude of the HV!

Could you ring up the paed's secretary and her check whether it was a psychiatrist that your son was going to be referred to and whether or not it has been done? For future appointments ask the paed (and anyone else) to include you on the list of people who get copies of heis reports. THey will always do this - but sometimes you have to ask.

can you contact the paed again telling them you want an ADOS done if they then correalate all info together and he has the ADOS done , you will then get to the bottom of this they did all this to me first time round hoping the "problem " will go away and tried to make out its my parenting skills as the HV is you i kept telling them ive two other DC older who are doing fantastic at school and ive doe nothing differently this time round its just that hes doing/ not doing XYZ ect ect it went on for 2 years getting the run around my DS was sick of being picked n poked and so was i as it was distressing him so i stopped for a bit but things got progressively worse and so did school so i went to GP was ref to child development clinic saw the paed they contacted school then and he has some assesments done finally the ADOS and all of a sudden i had my DX and now am in the process of giving my DS the help he should have had all along but for people like youve mentioned as they just would not listen at all he has classic obvious symptoms thet it is a disgrace they treated him like this so dont let them do it to you or your DC shout for advice/ help and DX .. they lkept telling me you dont need a DX but yes you do its the only way to get them ALL the help and support you both desperately need good luck

its hard to tell as a lot of the traits overlap but if you put all the traits you mentioned together it is something that should be checked ,when my ds was diagnoed he saw ed psy and a psychiatrist did the ADOS , he saw the SALT the paed again a few times OT and people like that they add all this info together with the ASDOS and decide wether the DC has the triad of impairments and come to a mutual conclusion the DX , so wether its AS or ASD or something else YOU know best you know if things arnt right as the head of ED PSY when i met him (as i wasnt happy with the way the LA's ed psy did her report and i complained) said to me you know whats best for your son ...wow only person to ever actually say that to me in all the time we saw different "profeshionals" he was the only one whos ever said that, and its true who knows yr child better the the HV or YOU his mum who lives with him?...

Before I answer you questions, we've had a developement.

HV rang, the EP report I recieved yesterday had just landed on her desk, now it isn't clear to me at all, but the HV is saying that the assessment's the EP did, were the statatory assessments for a statement, and he's got the statement!!! :o :o :o

This changes everything. The HV is back on board for one, now the nursery HAVE to do something (and I for one can not wait to see the SENCo's face on Monday!), obviously, we've had no actual statement yet, and I am sorely realising we'll have to fight for everything on it, but at least we've got the chance for that fight. And there is a good chance it will be in place fully for September when he starts school.

And as an aside, it does prove to DWP that the nurseries report was full of lies. So hopefully when the decision maker sees it all, we won't have to go to the tribunal.

Starfish, I did ask the Paed to copy me in on her report, that was back in December, we've never had a copy of it, in fact this EP report is the first report we've had from anywhere.

Betty, I have no idea what ADOS is, will look into and contact the Paed - thanks :)

Starlight (good to see you back :)) I think he has lots of ASD type symptoms, and up until a month or so ago, I'd have said yes (in my little knowledge) it's ASD, but seeing him now with the way he has come on so much socially since starting nursery, he's holding good eye contact, he has even started using small amounts of imaginative play, I'm not so sure. I am by far an expert, but looking at some critera I saw linked to from MN a few weeks back, that triangular theory thingymebob, the whole social element of it, doesn't quite fit anymore. So while I wouldn't be shocked to find that it is ASD for sure, I think it's as possible that it is something else entirely, which is a bit scary, thinking in terms of physical possibilities.

Still can't believe he's got the statement, I know we've a long way to go, but it is just such a bloody relief!

LOL That should read "I am not by far an expert!"

Ah, I won't tell anyone you've been here, we'll keep it our little secret

Ah, again!

OK, well, I'll quickly try and get hold of the EP and see what she has to say - fingers crossed the HV hasn't just made a big cock up :(

OK so just spoken to someone at the LA, our EP is on leave today, so I asked whoever it was on the phone if she would know anything about, she said she deals with the statements and she hasn't sent anything out recently, but that the EP may have dealt with it herself.

So on the report, does any of the following mean anything to anyone?:

DS2 should be placed on the SEN register at Early Years Action Plus, and a request made for EEYAP.
He will benefit from Targeted Learning Journey...

There is more, but they are deffo not relevent to any statement.

Am going to be so cross with HV if she is wrong.

Hi, just read this one. Early years action plus is the second stage of SEN Firstlt children are put on EY action (Equivalent of school action) which means the school or nursery recognise there are SEN but can cope with it in house and do an individual education plan. After that comes EY action plus which means outside agencies are involved such as EP or SALT. After that comes statutory assessment which the parents are involved in and have to fill in their contribution. Statutory assessment may lead to a Statement being issued. It's all very proscribed in SEN code of practise and has to be done properly. It could be that the EP has jumped the gun a bit and has already done her bit for statutory Assessment but they must go through the motions of law! You have to be informed that statutory assessment is happening. If the report says early years action plus that's not statutory assessment yet. Maybe she's saying in her opinion statutory assessment would lead to a statement. That would be great! You need to read up the SEN code of practice (google it) and read the stuff on statutory assessment and statementing. Good luck.

I have a copy of the SENCoP, but assumed the HV had read in between the lines and knew the statement was on it's way or whatever.

But makes no difference does it? This isn't leading directly to a statement then?

Bloody HV... she was so excited on the phone that he'd got 'the statement'. Balls. :(

Ok, well in the Early Years world, things tend to be slightly more fluid and help is (slightly) easier to come by.

What I mean by that, is that (as an example) DD1 was given 15 hours per week 1:1 on the strength of 1 visit from the Area Inclusion Co-ordinator. This woman was not an Ed Psych, but simply the person whose job it was to help settings deal with children who had difficulty settling.

So, the HV could be right in a sense, that the Ed Psych has said 'you need to apply for SEN funding for this child'. That is good news.

However, the only phrase you need in that entire report that tells you he DOESN'T have a Statement, is that he is to be placed on 'Early Years Action Plus'.

Now the good news, is that the Ed Psych has recognised that he will need extra intervention. The bad news, is that you are going to have to demonstrate that a school will not be able to deal with your DS's needs with their own resources.

Of course, it is only bad news if they can't If your DS is going to be ok on a little extra help, that is fine, and really on this board we can go a bit OTT with the idea that only a Statement will do. Only 2% of children need a Statement, and not every child on this board will be in that 2%. HOWEVER, if you think that your child will need significant help or specialist help, then you will be looking to secure them a Statement.

What you need to do is log everything. Evidence, is key. Whenever the staff have struggled - log. Whatever they say, log, with date and time.

Thanks Lougle, problem being that the nursery aren't accepting he has any problems (except with his speech) and have said that other than juggling his hours, they aren't willing to do anything else.

And the staff tell me nothing, nothing of any use anyway, according to them he has never once shown them anything, no matter how tiny, to do with SEN.

We're back to square one basically aren't we?

Yes I was about to say everything starlight said but she beat me :) it's ok you just have to make sure you keepin control and keep fighing. Ds is in the process of getting a statement he was on ey action in nursey then had to be on school action plus in reception for 1 term before they could apply for tis 2 funding with a view to statementing, they did and he got 25 hours 1:1 funding and I got a letter saying they would consider statutory assessment. Then I got a letter saying he was going to be assessed for statutory assessment and had to write a long parental advice letter and then almost immediately got the LAs paediatrician asking to see him to do his report and his OT came to assess him again so she could write her report and school have to write one too. Then they will read all the report and hopefully issue him a draft statement Which then has to be approved and only then will he have his statement.

Starlight, I've asked questions, I get lies back, when I've taken him in in the morning and he's barely slept, I warn them that he may be difficult, I go to pick him up and am told he has learnt to read! They will not tell me anything. I can believe that he behaves differently at nursery, but I cannot believe that he has never once put a single foot out of line, and yet, I have never been told he has.

The nursery SENCo, is the owner of DS2's nursery and another nursery in the next village, she works day to day at the other nursery and comes into DS2's nursery every 7-10 days, not for DS2, just to show her face I think. She has made it very clear she's not willing to pay for help him in any way, other than juggling his hours, and she has said she wouldn't even do that if the nursery was full.

I've obviously got the option of taking him out of that nursery and finding a place somewhere else, but he has found a lovely little friend, he likes the staff, and he has come on a lot socially since starting there, so I'd rather not move him, aside from anything, the way he reacts to change, it'd be a nightmare for him. But, at the same time, he is starting school, that's 6 hour days 5 days a week, as it stands, he'll have no support, no file from nursery with any truth in it, no nothing. It will break him, he just will not be able to handle it. And even if he suprised me and managed somehow, he would be so far behind his peers, it won't be long before he get's that 'naughty' label, which will then stick with him through school, he'll end up going off the rails, with a wasted school life, and no one will help then either.

I just don't know what to do, I don't know who else to go to for active input, I don't know when anyone else is going to see him, I don't know anything. It's all very well putting up a fight, but I've none else to fight with. I won't give up, I can't, but at the moment there is nowhere else to turn.

We will end up losing him forever.

Oh and FWIW I do have a log, of sorts!

Oh, Natalie Jane. Don't despair. He's really very young and you have already had an assessment by an EP who has seen issues and recommended early years action plus. That is a great starting point. If nursery won't help him school certainly will. You'll need to be a pushy parent but you'll get loads of advice here.

You can ask for statutory assessment, it's often taken much more seriously by LAs if parents request it rather than the nursery. Log all the obstructive comments from his nursery. Talk to the EP next week. Get in touch with Parents in Partnership. They will advise you independently.

My DS2 didn't get his statement til Y1 and he had an ASD DX. He's done really well at primary with a few ups and downs. His classmates are aware he's 'different' and actually are very supportive. Make some friends with the mums and play on their sympathies and he'll get party invites.

It's been a bit of a rollercoaster this week, hasn't it? You'll get through it and you'll do the best for your DS.

i found the nursery and all my DS's subsequent schools all wanted to pretend it wasnt a big problem at meetings then they would be asking to see me nearly every day after school or ringing me so their reaction to yr child havin sen is no shock plus we must remember they are prob charity funded so they wont want to have the possibility of having to give anyone 1-1 or spending anything they can get out of (this is generalising im sure there are some fantastic pre schools/ nurseries out there too but this is what ive found/ heard from other parents .unfortunately getting a statement IF you need one at all is quite hard and takes months and yr DC will have to be on school action plus before they will even contemplate it these days unless your DC has very very obvious probs befor starting school that is, but youve started the ball rolling and lets hope you get somewhere soon dont worry but please if you need help and support or advice shout loudly or you wont get it from them

NatalieJame I share your frustration at being told how different he is at nursery. We had that at nursery and still get it at School. Fact is, in our case, at School my DS is quite different to what he's like at home. Although, some things do go completely unnoticed due to the fact there are so many kids there, and the fact that my DS does not show his emotional side at School.

I'd suggest Parent Partnership before you do anything else. They will advise you and accompany you to meetings if you want and help you with paperwork. They won't do anything you don't want them to either. It's confidential.

With regard to School, don't expect a miracle. You may be lucky with a good SENCO. But you may still have to repeatedly ask and insist on things. it's a shame but it seems this is a predicament for many parents/carers. It's great that he's on School Action Plus already.

My DS is currently being assessed for ASD, but now they are also assessing for Learning Difficulties as he does struggle at School (soon to be on School Action Plus). The psych did say some learning difficulties can result in some of the behaviours.

If you still think it's ASD at any point, push it. Don't doubt your own instincts. I have spent far too long driving myself mad doing that. You know him best!

Above all, hope it goes well.