Autism Extra Support At Nursery Question...

[Dad101]

Hi all, frst post so please be gentle

Our DS has suspected autism, delayed speach and some other milder issues. At this stage we have had a meeting with the peadiatrician after beeing referred by our speach therapist and we're waiting assesment. He attends a local mainstream nursery for 5 hours a day Monday-Friday and after an application (Initiated by them) he now gets 3 hours each day of 1 on 1 which we're really pleased about... But... There are a couple of questions that are niggling us, I hope with the experience/wisdom here some of you can perhaps help with...

1. Upon the start of the extra 15 hours per week on 1 on 1 support (This only started on Monday) I asked the staff at the nursery how it would manifest itself to which they responded that his key worker (Who's lovely and seems to really care) would be spending time with him, although wouldn't be doing anything different to the norm, just going about with him as he plays as usual really. It struck me that where-as it's great that he's getting the extra time and attention as far as I'm aware his key worker doesn't have any (Or very little) special training in dealing with SEN/children on the spectrum. I asked about whether it may be possible to have someone from outside the nursery provide the extra support but was told this isn't usually something that the LA agree to readily and there are long delays. Where do I stand with this?

1. Again, the nursery is lovely and we're grateful for the extra support that's been made available, however on the basis of close family members working in education I'm all too aware that somethimes the extra support may not actually be given and instead divided between the other children and/or just used as a cheap way for the nursery to fund extra staff... Obviously short of hanging around outside or going undercover we don't have any means of being certain that the extra time he's entitled to is actually being used pureply for him.... Is there any way I can test or ensure it happens? Perhaps by asking to see what outcomes they are working towards and then looking and measuring those outcomes on a weekly basis? Maybe asking to see a breakdown of how the extra 3 hours a day was made up at the end of each week?

Again, thanks in advance for any help or suggestions and apologies for the mini essay! This is a worrying time for us and everyday at the moment feels like a fight to make sure we get the best outcome possible for our little guy.

Hi, my nam3 is Charlotte and I am in my final year of my BEd at UCL in London. We are studying this term about SEND and inclusion difficulties. Would you mind if I asked you how you are getting on with your request for extra support? How are you finding the process? It seems to be a very complex issue. Kind wishes, Charlotte

I forgot to say that my BEd is in Education and children's wellbeing.

Hi @Dad101, I would suggest that you meet with the nursery SendCo or even the area SendCo and they need to draw up an IEP (Individual Education Plan). This is standard for any child on a SEN register, which yours must be if they have funding for 1-2-1 support. Your DC needs to be assessed in terms of the Early Years Foundation development levels to establish a baseline and then interventions need to be put in place to help them reach their age appropriate level.

This will then list current concerns, for example communicationor social interaction. It also has to list very specific outcomes and the interventions that they will put in place to acheive those outcomes. For example: Outcome: DC to consistantly communicate needs via objects of reference. Intervention: Use object of reference to communicate with DC for a minimum of 20 instances a day. It also states who is responsible for carrying out these interventions.

Then the IEP needs to be reviewed regularly, ideally once a term, but also updated at any time as you receive more input from professionals such as Speech and Language Therapy.

I would ask them how they are maintaining adult:child ratios during the 3 hours if the keyworker is acting as a 1:1. Unless they have excess staff ratios to begin with, they would need to bring someone else in, as the key worker is effectively removed from the other children.

This is the statutory framework for Early Years Foundation standards and care: https://www.foundationyears.org.uk/files/2017/03/EYFSSTATUTORYYFRAMEWORK2017.pdff_
A long read, but worth it to know what should legally be happening.
Also the SEN code of practise, specifically chapter 5: https://www.gov.uk/government/uploads/system/uploads/attachmentt_data/file/398815/SENDCodeeofPracticeeJanuary2015.pdf

And don't let them tell you a diagnosis is a pre-requisite. It isn't.

Hope that helps. It can be a battle sometimes, but worth it. Best of luck with the whole assessment process. We've just been through it and it can be tough. Knowledge is power. Don't be fobbed off. Another excellent document in terms of assessment is:
www.nice.org.uk/guidance/cg128/chapter/Recommendations

@LiefievdM, first things first, apologies for the late response to this. I'd assumed after a few days that my questions were either silly or I was being too precious/fussy given the lack of responses. Thank you so much for your detailed reply! lots of great information there, your post has gone some way to putting me in the picture.

RE the nurseries sendco (I'm assuming that's the same thing as the 'senco'?) we've had several chats with her but setting up a meeting with her and asking to see and discuss viewing or drawing up an IEP sounds like a great first step. Our DC has a book that the nursery keep that lists what age range he's functioning at for various aspects of his develpment, ie communication etc so it sounds as though they already have aprocess in place for assesing his development levels which is good. Having clear plans as to what interventions they have planned and outcomes they are looking for and documenting means there will be something we can measure and monitor, great news. the IEP sounds like it's the key to getting a handle of what's going on so thanks for that :)

In terms of asking how they are maintaining their adult/staff ratios, do I have a right to ask to see specifics for any given week? My concern is that we have no real way of verifying whether (Irresepective of staffing) or DC does genuinely get 3 hours per day of proper 1 on 1 as opposed to there just being extra people in the room :( Unforunately I guess this is concern we're just going to have to learn to live with as there's no real way of verifying the actual real time spent with him in a 1 on 1 format.

The links to the statutory framework for Early Years Foundation standards and care and the SEN code of practise are a Godsend and have really helped to give us an idea of what to expect (And also their obligations and framework RE care that should be provided). Thanks you sooooo much for posting those!

At this stage we have a second appointment with the paediatrician in March but formal assesment doesn't begin until July, plenty of things to work with in the meantime though and where-as this has been a really tough time for us we take comfort in the fact that we can be proactive and fight for the best possible interventions/care without wasting time 'waiting'. All the evidece seems to suggest that the earlier that intervention takes place the better the outcomes can be...

Wow what an uplifting story of hope. Your nursery sounds like it is on the ball and SEND has been updated from SEN to include disability. I think you do have a right to finding out if your child is receiving his 1:1 sessions. This is a delicate area. Maybe you could ask what his 1:1 lesson will involve each week so you can extend the teaching at home. That way you are showing 8nterest in their practices and you will be able to see the teaching support your child us having. You sound like a loving mum and I am sure the nursery will see that :)

No problem @Dad101. I know from how confusing all this can be when you are just starting out on the journey. Having the actual statutory documents helped me a lot. I'm someone who needs to know the facts and rights and then I can work with that.

Your nursery does sound like they are making a good effort, so don't be too "guns blazing" with them. An aside question about the ratios, maybe: "so do you have to get someone extra in to make sure your ratios are maintained when (keyworker) is 1-2-1 with (child)?" This is really simply to make them aware that you are informed. There is honestly no way to check up on whether 1-2-1 is actually being given for the entire time. The only measure would be the IEP. If outcomes aren't being achieved, then you can question that and suggest permanent 1-2-1, more intervention, etc. if outcomes are consistently not achieved, definitely ask for an observation by the Area sendco.

You are absolutely right about early intervention. If read many many studies that have proven that early intervention improves outcomes. However, it's not a magic wand. For us, our son still doesn't speak after losing his speech about a year ago. However, the masses of intervention we have been doing, such as: regular special needs playgroups; social communication playgroups; introducing very basic picture/object based communication; and attending a mainstream nursery; etc, have helped him a great deal in terms of behaviour. A year ago he was angry and frustrated all the time. Now he is mostly a happy boy. He still has all the issues he had a year ago in terms of social interaction and communication etc. It's just that we've learnt how to "speak his language" so to speak. And he has some tools to use to ask us for things like juice or his favourite snack etc.

You're definitely in the right place for help. I would be lost without Mumsnet special needs boards. It just sometimes takes a while to get responses, because most of us are pretty swamped, as you can imagine.

Also do comtact any special needs charities in your area and see what they offer in terms of playgroups or coffee mornings or similar. Just having an opportunity to chat face to face with other parents in your situation is worth it's weight in gold. It really helps to know you're not alone and you can pick up really good tips.

@LiefievdM, thanks again :)

Yes, I think we'll approach his nursery with a perspective of, "Can we have a look at the IEP and a chat about it to make sure that we're doing the same kind of things at home" perspective rather than a "We know our rights and we're going to perform our own audit"... They're actually really good and we're lucky to have them on our side so the last thing we'd want is to alienate them.

Also, good advice RE SN playgroups or coffee mornings etc, I'm embarrassed to admit that's something we hadn't really thought of!

Our little chap has a great nature, he's just turned 3 and where-as he does have some language and can name some things in books, ask for drinks/food etc and sings nursery rhymes pretty much constantly there's no verbs, just nouns. He can't converse with us and won't say hi or bye to anyone. Seeing him in a nursery setting brings home how far behind he is, and it's worth mentioning they've held him back a year too... No sensory/food or sleeping issues but some tiptoe walking, hand flapping and spinning round is present and he seems to struggle to sit still or concentrate for anything over a few minutes, he's always on the go! Also very little in the way of joint play, shared experiences or bringing things to show us etc.

My wife has a history of some autism in her family and her nephew at our childs age was told by his nursery that they couldn't cope with him for any more than one hour per day as he was so angry and frustrated and pretty much spoke his own language that no-one (Including his parents) could understand. Fast forward to now and he's fourteen, in mainstream school and actually doing some of his GCSE's early! When I speak to him these days I'd honestly never guess that he was on the spectrum if I didn't know. He's a lovely lad an everytime I'm around him he fills me with enthusiasm and positivity. Also, a great book I read is 'Send In The Idiots' by Kamran Nazeer, he didn't speak until he was four, attended an Autism based SN school and ended up working as a government advisor and author, again something really encouraging and insightful.

Thanks again for your responses here, as you say it's great to touch bases with folk in a similar situation. The internet, for all it's ills really can be a force for good at times :)

Happy to be able to help

It is great that you have your wife's nephew to give you that long term view. What a great story. Definitely made me smile. Thank you.

Send in the idiots - thanks for the recommendation. Ordered! A very interesting (though long) read is aso Neurotribes by Steve Silberman. It tells the history of the autism diagnosis and therapies in a really fascinating style. I for one am very grateful that we find ourselves in the UK in 2018. Our kids have so much more acceptance and opportunity now.

We also didn't notice any sensory behaviour in our son. He had some stimming and the issues with social communication/interaction, but that's all we noticed. Only once we got talking to other parents did we realise that he was actually displaying loads of sensory seeking behaviours or repetitive behaviours, etc. They'd say: oh my son does xyz because he is sensory seeking/avoiding, and I'd think: Oh! My son does that too. We were just so used to his quirks we didn't really see them for what they were. Anyway, I digress.

So glad to have helped and all the best with the assessment. From what I've heard this part is generally thought of as the toughest part. Getting someone to take you seriously and see what you see. But you have your nursery's support and that is a huge help already.

All the best