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.

SueVide I know exactly how you feel. This is our 2nd attempt at an EHCP and I had to appeal against their refusal to assess. I'm thinking that if they finalise the plan without including my amendments then I'll just see how things go and I guess that I can always appeal to the tribunal after the first review. My son's anxiety is through the roof at the moment so I'm trying to stay as calm as possible - easier said than done. I'm exhausted

I feel for you dimples. At least DS has been relatively ok. It must be really tough dealing with the EHCP while trying to manage your child's anxiety. I almost think they are banking on the fact that we'll run out of energy to deal with them.

SOSSEN said to get everything in writing in case things go to tribunal so I've emailed a summary of the key points after each phone call and tried to do as much by email as possible. My coordinator is always pushing for phone calls
where she tells me that all the unlawful stuff is LA policy but mysteriously fails to add this to emails she sends and I'm v sceptical of anything she says now.

We haven't even got to that stage yet and I'm already feeling how stressful and tiring the whole process is so I feel for you both.

I find it amazing that you have to go from being your average parent to suddenly having to know random case law in order to fight your point the whole time. You would think that they would want to make thing easier for parent's of children who need EHCPs not harder!

SueVide that sounds like a good approach. If I had the time and energy I think I would want my day in court. I think it's appalling how unlawfully many LA's policies are and how they misrepresent them to parents who already have enough challenges on their plate.

Hi all! Hope you had a good weekend and DCs did OK in the heat!

We've finally got dates through for ADOS and pre-school visit. All in the next month (including the meeting with us to take us through their findings).

I don't know much about the ADOS. Would we be in the room with her or in a separate room? They don't seem to be proposing to talk to us at all as part of the assessment (maybe they feel they've got enough from previous meetings? Though you'd think they might want an update... unless they talk to us while she is in ADOS - but then they said that only one of us needs to attend, whereas you would have thought they would ideally want both if they are getting an update on development?)

We've been waiting so long, feels very strange how we are finally here. Very mixed feelings about it!

Hi Lighttripper glad your appointment came through.

I was very conflicted before my ds's ados as I thought he'd made so much improvement that they wouldn't diagnose him (not sure what I was thinking there as it's so obvious he's autistic!). I was really nervous for him.

I went by myself with ds and I was in the room talking to one person while the other played/did the tests with him. I think though they have two different tests, one for verbal children and one for non-verbal (which ours was). So if your dd speaks it might be different for you.

Hope it goes well and hopefully you will find out one way or another.

Thanks livpotter! Probably they will talk to us at the same time then. She should be OK on her own once she's warmed up a bit. Presumably you go into the room with them so they can get comfortable with a new person?

I need to get my paperwork sorted out. I'm sure I read somewhere that they ask about dates and stuff and I do have lots written down but it's all over the place across different notebooks. I'm going away this weekend so maybe I'll take them with me and try to make a bit more of an orderly list of the important stuff so I can find what I need if they ask questions in the meeting!

I do feel DD is very borderline but it seems lots of people feel that and then get quite a high ADOS score, so I'm trying to be prepared for all outcomes! She is verbal and doesn't melt down (as I understand what a melt down is - she does get angry and shout at us when we don't do what she wants but that seems pretty typical for 3 year olds... maybe I'll be told she does it differently!). But then that's always been the case and they've still told us they think she is on the spectrum. So some parts of what I read about AS seem very different and I feel we are totally fraudulent even being there. But then we've never pushed to be assessed, and other parts of it feel very relateable and relevant to how we parent DD, so I think we do need to go through with this final step and find out what they say.

Anyway, not long to wait now I guess!

LightTripper we had a joint assessment (paed & salt) not ADOS as such, I don’t think. They asked me for a complete medical & developmental history - 90 mins of questions. When did they meet milestones, babble and on and on. The letter said it would be a play based assessment so I wasn’t prepared for it and wasn’t able to answer all the questions exactly, I knew some by heart but not all. I would have been much more prepared if I’d known. Good luck. Either way I’m sure you’ll be relieved to get it over with.

light our experience of assessment was the ADOS play assessment with us in the room, but we weren't taking part. Speech therapist played with DS and clinical psychologist filmed, then they both scored without us there. We then had a three hour interview (!) On another day (ADIR) which was with speech therapist and educational psychologist. Then I had to hassle for an appointment for results. And we are still waiting for the report to go with it!
The questionnaire was hard going and me and DP gave different answers a lot.
Don't feel like a fraud, it is a spectrum so everything on the list isn't going to be present in your DD.
I like liv was kind of worried they'd say he wasn't, when really there was no question. He

We had a ‘team around the family’ meeting this week to talk about transition to school. His new reception teacher attended. I’ve spoken to her a couple of times before (pre-diagnosis) and she is very experienced and has worked with ASD children before so he should be in good hands. I still had an emotional wobble in the evening though after processing it all, worrying about how he’s going to cope. It seems so real now and so soon.

We should hear about the EHC assessment next week. I understand it went to the panel on Thursday. I’m on tenterhooks.

I hope everyone else is doing ok.

Good luck open sounds like your meeting went well and an experienced reception teacher sounds promising.

Thanks mama and open for the ADOS intel. We have our assessment soon and I'm dreading it. Even though we're certain that DS has asd, the confirmation will still be tough.

We're waiting to hear from the other (more SEN focussed school) although we've accepted a place at the school where he goes to nursery through the main process. I'm looking forward to getting the place confirmed and starting transition stuff.

SueVide our assessment was a bit stressful tbh. Not only were we not expecting such detailed questioning (obviously we expected to discuss him) but DS was very anxious and would not stay in the consulting room, let alone do any of they tasks they may have wanted him to. He just wanted to play with a big dolls house that they had in reception and in the garden. DH fielded him while I talked to the paediatrician. The SALT did go out to see him for a while.

Like you, we had been expecting the diagnosis but I still found getting confirmation very hard. A bit of me hoped that I was wrong and it was just a developmental delay. Whilst confirmation didn’t change him, it threw his future into uncertainty and I couldn’t talk about it to anyone without crying for several days afterwards. After a few days I had processed it and calmed down. I manage my feelings by trying not to think too much about the autism and just concentrate on his strengths and weaknesses and how we can support him with those.

At the end of the appointment they told us the diagnosis, after discussing it privately, but we had to wait ages for the report to be issued having it chased a number of times. When it came it had several errors and, frankly, just wasn’t written well. Don’t be afraid to ask them to revise it if you need to.

The school meeting sounded really good Open. You must feel reassured. Fingers crossed for the EHCP!

I hope you hear about the school soon Sue. When's the assessment going to be?

Good luck Sue, Open and LightTripper.

I'm expecting to hear back from the Council this week about my proposed changes to the EHCP. I imagine my experience will match yours Sue.

Am feeling like I may be ready to re try toilet training.
Anyone got any tips for toilet training a non verbal, non cooperative 4 year old?!

Best of luck dimples.

mama that sounds like a daunting task! We used the Oh crap it’s potty training method. It worked pretty well for us. Do you use visual symbols?

Thanks open pictures are a really good idea. We really need to make an effort to use them more.
What would you suggest - picture of toilet, sitting on toilet, treat??

Hope it's good dimples.

Good luck Mama. I basically spent the first few days running up to my ds with the potty every time he started to go then gave him an M&M every time he did anything in the potty even if it was only a drip. He eventually got the idea that potty equalled chocolate. I also had a picture of the potty and a picture of chocolate and showed them to him each time he used the potty and got chocolate. He got it much quicker than I expected but that may be more to do with it being the right time than what I did!

mama I’d try to use the same visuals as they do at your DS’s nursery, I’m sure they’d be happy to share them. I’ve attached a pic of some our nursery gave me.

The Oh crap method is very specific. If you can afford to definitely download or buy. I have it on Kindle otherwise I’d be happy to send it to you. The first stage is similar to what Liv mentioned. Block out at least three days, have him naked from the waist down, watch him like a hawk (doing literally nothing else - it’s good if you can take turns with a partner) and every time he starts to go you sit him on the potty mid-pee and, in this case, show him the toilet or potty symbol. You keep doing this until you see signs that he’s starting to get it. Then move to the next stage.

Thanks liv great tips.
He's a bit big for a potty which would be easier. Shouldn't have put it off so long.

Also some advice please. Its DSs 4th birthday in a few days, its on a school day. What can we do to make morning special in some way as he won't know its his birthday. We having a little family tea party after school but would be nice if he had some idea it was a special day before then. Balloons maybe good, what else?

For us each stage took longer than the book suggested but it did work. Method or coincidence, who knows but it gave us something specific to focus on.

mama we just took party bags in for all the children who were in that day and cake. At nursery they always sing happy birthday to the child etc. DS wasn’t really interested so they didn’t push it.

Thanks open wasn't thinking of in school though. Meant at home with us. He goes in taxi to school so not sending anything there. No idea if they do anything. Just wanted him to wake up and know something special was going on.

Ah, sorry. Then balloons and decorations and a few presents to open? A special breakfast if he’s a good eater (mine isn’t).