DS with ASD starting school Sept 2018 - I am feeling overwhelmed

[Hurricane74]

Hi

My son has a diagnosis of ASD and is due to start school next Sept. We are in discussion with the LA about an EHCP and have a Joint Assessment Meeting for early December. I had hoped he would go to a mainstream school and see how it goes, with the option of a school with an autism unit or a SS is things don’t work out. But now am feeling very doubtful a mainstream school could meet his needs. We had a report from the LA yesterday based on observations of him at preschool and it makes such sobering reading. It puts his developmental age at 8-20 months for most areas (he is 40 months) and his understanding and listening skills at 0-11 months. (His moving and handling skills are almost age appropriate). His main issues are social anxiety, sensory issues around noise and his lack of understanding and speech. Has anyone experience of a child with similar issues managing in a mainstream setting? If so, what kind of provision did you ask for and receive? Thanks for reading.

Sounds tough dimples I don't know whether it's the return after Christmas or general winter coughs and colds but DS is v anxious and teary at nursery again (took him ages to settle in the first place). I feel for you as its tough to manage. I think the anxiety makes DS regress as his speech has gone back a bit too. Fingers crossed things improve for your DS.

Thanks SueVide, I guess it is a tough time of year for adults and kids. Just went to check on him - he looks so serene in his sleep

We have had an unexpected turn this week, having not really wanted / asked for ASD resource base in mainstream primary I believe we may now have secured a place for DS at one not too far from us (awaiting confirmation emails). It wasn't what we originally wanted but they have impressed me with their approach and i now believe it may well be best of both worlds for our DS. Feeling like i just want to pin it all down finally but hesitantly feeling a slight wave of relief....

How is everyone else feeling now applications are in? Are EHCP assessments etc coming along ok? Our EHCP process has really knocked me for six energy and stress wise.

That sounds v promising Chasing finding a place with an approach you like must be such a relief.

Chasing that sounds like a good option.

We've just had our EHCP assessment application refused. So the appeals begin!i already feel very deflated by the process and it's not really even started yet. Ugh

Sorry to hear that Livpotter.

Our application was refused and I appealed and then the day before the deadline for the Council to submit their evidence they called to say that they would not contest my appeal and would assess (this appears to be a common experience - makes me so angry).

Now we are on the assessment phase things seem to be going better and the council appears to be listening more to their own Ed Psych ...

It is so draining though isn't it. Good luck

I agree the whole process is completely draining. Sorry to hear you are having to appeal already Liv. Sadly i agree with dimples lower numbers of EHCPs means less money going out. By refusing most they are saving some of that pot of money because not everyone will appeal and then not everyone that does will end up with a plan. Keep plugging on its the only way. Also seek legal advice and advocacy when you can/need to, this made a big difference in how our LA treated us when it came to the important stuff and also saved my sanity.

Thanks dimples and chasing, you're both very reassuring!**
I've heard that this happens a lot and I was prepared for it but I still feel annoyed. It also annoys me that they cited that the nursery haven't proved that they are doing enough (when they clearly are) and not that fact that it is very obvious my ds is going to need an EHCP. Like you say it's all about saving themselves money.
One thing that is good is that it has prompted them to contact the nursery about top up funding, which I was told was not available cross-borough so that's a plus.

Sounds good chasing
That's the type of setting we are hoping for for DS but can only apply via Ehcp process so have applied to the village school for now.
We have some forms to fill in ahead of first Ehcp meeting in march- things like what we like about DS, what works, what doesn't. Has anyone else had something similar? Not sure what to write really or how it will feed in to a ehcp, feels a bit patronising to be honest. Anyone have something similar to complete, what did you write?

Mamapants we had to fill out a form like that for the initial EHCP application. It covered what we thought DS's needs we're and our aspirations for him. We're waiting for the panel to decide whether we get a plan but they haven't asked for anything else.

It was really difficult to fill out as the questions were deceptively simple given that they will use it to decide how much support and funding to provide. If you have a local parents support group SENDIASS or Family Lives they might be able to help.

That's what I thought suevide the questions on our forms don't really translate to what help he needs and that we want.
I mean I like all kinds of things about him but that's neither here nor there when it comes to what support he needs.

Hi everyone, sorry for complete silence here. Hope you are all surviving!! We now have a final EHCP I am pleased to say. The less good news though is that we didn’t get a place at our first choice school which has the autism unit. They came out to visit DS but said they felt the dynamic between him (anxiety and sensitivity to noise) wouldn’t work with a couple of boisterous boys they already have. It’s a real shame because I feel he needs that level of specialist care. So now am left with local school where Dd1 and Dd2 go which I feel is not brilliant for SN or a school ten minutes away which is 2 form I take (up to 60 kids in reception room) but has good reputation on autism. It’s so tough. Just don’t know what to do for best.

That is tough hurricane have you been to visit the other school?
Great that you have the EHCP though and that you are happy with it.
Im still waiting for DS1 s school to give me an appointment date for going in.
And had a date for second part of assessment. Am hoping they won't then want more appointments.

PS I wouldn’t be too worried about the initial form you mention for EHCP. The rest of the plan goes into all the detail about the provision and care they need and we hadn’t plenty of opportunity to comment on that. I think the form just gives you chance to set the scene a bit. I did use it as an opportunity to talk about his need for 1:1 time, and help to communicate and love of outside etc and basically shoe-horned in my most pressing points!

SORRY I mean HAD plenty of opportunity to comment on that!

Thanks hurricane that's useful. So difficult going through a completely alien process that's so important. It feels totally out of our control.

Yes have visited the other school and met their senco. I definitely felt it was too big and couldn’t see him settling there but the senco was great and really positive and enthusiastic about taking DS on. That was however before she saw the EHCP! The local authority are consulting with them now so we should hear in the next two weeks if they will take him for definite. Do feel that single form entry would suit him a lot better but the local school is so short of money and teaching assistants I feel DS would get lost there and not be properly supported. I guess, as somebody once said to me, whichever school we choose doesn’t be have to be permanent if it’s not right. We can always move.

True, can always move if it doesn't work. People are always telling me as well to consider what will work best for them right now because you can move them if/ when their needs change.
I really hope we can get a place at the unit, it's a very small school and so lunch and break would be with everyone but wouldn't be too overwhelming.
My DS quite likes crowds and noise but only for a very short amount of time and then he's exhausted and grumpy and wants to be on his own.

Can't seem to shake off feeling low after a rather depressing meeting at nursery on Friday to review my son's support plan. I think I had been downplaying his social difficulties with other kids. His key worker said that recently she thought that he viewed a few other children as friends but these other children did not view him as their friend as he was not really operating on their level/too rigid in his thinking. To be honest I thought he was quite oblivious to the concept of friendship which was in some ways easier to cope with than this 'rejection'. When I ask him who he has been playing with at pre-school he always names the adults, no children.

The other thing that was disappointing is that he has made great strides with toilet training (with me he nearly always tells me when he needs to go) and he has been having fewer accidents at nursery, maybe 3 a week. However, I just learnt that he has never told anyone there that he needs to go - I think he has just got better at holding on and going when they all go. He has been telling me when he needs to go (not reliably though!) for about four months. I struggle as to how to help him transfer what he can do with me to other settings.

Sorry you had a depressing meeting. I think one of my saddest moments was when the nursery told me my ds had no friends and most of the other children are scared of him because he's so unpredictable.

We have had the same problems with toileting at nursery. Sometimes my ds just wouldn't go for the whole time he was there (7-1!). We started potty training at the end of August and he has just got to the point where he will go fairly reliably at nursery.

With my ds it seemed to be a problem with generalising, he can't see that the same rules apply at home and Nursery or if different people are around (ie his key worker instead of me) so he's had to learn it almost from scratch at Nursery. We used visuals for him (a picture of the toilet) to encourage him to ask, otherwise the nursery staff keep an eye on him and try to encourage him to go when he seems ready.

Thanks livpotter.

Unfortunately my boy flies into a rage if anyone suggests that he needs to go to the toilet. That was a good suggestion re the picture of the toilet - I'll give that a go. My son seems to really struggle with generalising too and seems to adopt different practices in different environments. His language is radically different at home and nursery - when I showed them a video chatting to me at home they were amazed by his vocabulary and sentence structures.

The friends thing is hard isn't it. DD seems to have started to pal up with a couple of younger kids at her pre-school and I so so hope it is for real but at the same time I can't really afford to let myself believe in it because it's so hard to hear bad news and I know I am a born optimist so tend to see the positive in everything - sometimes to an unrealistic extent. I am slowly developing a tougher skin and I think I'm just going to have to do lots more of that.

We have found with DD that things do eventually trickle through. So first she'll manage new social skills with me and/or her Dad or nanny, then other close adults, then adults at pre-school, and finally (finally finally) her peers (in one-to-one or small groups - I really doubt she will ever be confident socially in big groups but that seems less important so I'm not focused on it).

So I was really happy at the weekend that she was doing some good play skills with me - actually taking my suggestions to develop a game she had started (initiation!), and copying, taking turns, etc.... but I know that it will probably be months before she can do the same with other children her age. We just try to expose her to as many opportunities to practice as possible (while she is so little this works, I think, but I do worry as the children get older and more aware and judgemental that the opportunities to practice and get things wrong "for free" will dry up a bit...)

Yeah I think I'm going to need a tougher skin too.
Had a really tough time at soft play, poor DS just hated it the whole time, upset and crying and strangers tutting at him. So hard DS1 wanted to stay but DS2 was miserable.
Need to chase up the local school about meeting to discuss DS.

Mamapants, it must be hard when you have two with different needs.

Lighttripper you need to keep hold of that positivity!

My boy received a party invite today so that was a plus (until we actually have to go!)