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.

If it makes you feel any better Open my ds has been mainly living off breadsticks and milk this week!

Open, groups and parental courses sound good. I haven't heard any reference to those in my area but sounds like a good idea

livpotter that just makes me feel bad for you and your ds! It’s rubbish isn’t it? He finally ate said toast and cereal when dh came home from work. I’m going to try dropping snacks to see if it helps even though he can often be the same at breakfast having not eaten all night...

dimples ask your SALT if they run anything like that. Ds is part of an early help programme so we’ve accessed it through that, referred by the SALT. I’ve been waiting since November to get on them.

So, that's done! I feel a load has lifted. I didn't realise how anxious I had been about it until it was done.

They actually didn't have any questions for us - we just sat in the room while they did the assessment. DD was pretty good - about average. She seemed pretty tired and played up a bit (chucking stuff around) - so not her best day but I can't say it's completely out of the ordinary!!

I think she did well on a lot of it but I can definitely see areas they'll be marking up as autistic traits. She answered the assessor when her name was called but didn't look at her. She then glanced at her to see where she was looking, but misjudged it and thought she was indicating a picture rather than the toy cow on the table that the lady was actually trying to draw attention to. She also didn't take up any of the opportunities to ask the lady questions about herself. In fact, when she was asked her favourite colour and then the lady said her favourite colour was something else, DD looked at her very seriously and was obviously trying to work out what it was, and then just said "I don't know" rather than asking the question!

She also did well on most of the imaginative play (doing pretend play with a doll and some small figures with furniture etc) but when the doll needed feeding and there were only toy plates, no toy food, seemed completely flummoxed by it - kept suggesting that the food might be lost or hiding in the box. They had a tiny bottle of toy drink and when the doll said she was thirsty and could she have the bottle Isla pointed out that it was "only imaginary" because it wasn't moving and didn't have any bubbles, rather than feeding it to the doll! I was really surprised because she often pretends objects are something else, but she obviously really struggled with this particular setting. So that was interesting.

They didn't seem to want any more information from us, so I guess they are just going to go on what we've said in past assessments with them. They are also seeing DD at nursery next week, and then meeting us again the week after that (though my impression was that was to report back to us what they think rather than get more information from us).

Anyway, it feels like that is the hard bit done. Though I'm sure in 2 weeks I'll be equally freaked out by finding out the results!

Glad that it went ok light it's such a relief after so much waiting and worrying. Your DD sounds like she did really well. Hope you're having a well deserved and

We both went for and after, with OH (and I also had a sarnie because I managed to leave mine on my desk at work, so was starving by that point!!)

Well done LightTripper! Hope that you have had a relaxing evening.

LightTripper so glad it went ok and you feel a load has been lifted. It sounds like she gave them a pretty good view of what she’s typically like? That’s the best you can hope for I think and the most likely to lead to the correct outcome, whatever that is.

Glad it went well today Light.

Yes open I tried cutting out snack but then he didn't eat at all. I've found leaving things ready on the counter seems to encourage him to try things and he's randomly stated wanting raw onion as they talk about them on Hey Duggee! I feel the best I can do is encourage him to eat when he wants to and not force it when he doesn't.

Hi open. She was a bit coldy and didn't have her best day. There were a couple of times she just said "No, I don't want to do that" when I think on a better day she would have had a go. But it was definitely all "in character" if you see what I mean, so I think they got a pretty good impression of her on a not great but not terrible day. Part of me wishes she'd had a fantastic day and "knocked it out of the park" but I guess that's not really sensible when you think that this assessment could be the difference between getting support and not getting it.

I have a friend whose daughter has a very restricted diet Liv (I think some kind of anxiety issue rather than ASC) and I know she says that given what she's now learned from CAMHS etc. her main wish is that she had been more flexible and not made meal times such a battle ground when her DD was small! It is hard though as you have to tailor your parenting so much: she parented all 3 DDs the same, yet one eats about 5 foods (now more actually, she is improving her repertoire with age and a more relaxed approach) and the other two eat everything and anything!

Didn't have a massively relaxing evening as I was catching up on work, but I did manage a bath and really nice bedtime with DD and DS who were both in a very cuddly mood, so all good!

Thanks light that is reassuring! Glad you had a cuddly evening with your dc.

I have received the revised draft EHCP and it is much better as it expressly refers to 1:1 with time against each row which adds up to full-time. I am so happy, I could cry!

Now back to battling with physio, SALT and post-adoption support (I'm trying to get sensory integration therapy through them but they aren't returning my calls

That's great news about the EHCP dimples!! So pleased for you. I hope the other people come back to you soon.

dimples76 that’s great. One less battle is good. Hopefully you can get the others sorted too.

Liv at least raw onion is a vegetable!

Well I called to book our NHS OT appointment and they have it down as a handwriting issue . That is merely one concern - that he still holds a pen/pencil in his fist and has little interest in it so has the skills of a much younger child - there are other issues too. At least we can raise other things when we see someone I suppose. I knew it would be rubbish, I’m so glad we can afford someone private to help us but what a shame for those that can’t.

I attended my first class of the SN parenting course yesterday and it was supposed to contain the parent sensory talk which replaces any actual therapy for sensory issues in our LA. Well it was pitiful. A few slides about hyper/hypo sensitivity and associated behaviours, sensory seeking etc. but absolutely no practical information on ideas or strategies to help which is what I was expecting. For someone who hasn’t read anything about this I imagine they will have learned something but otherwise it wasn’t really helpful. I’ve already got the book Understanding your child’s sensory signals and The out of sync child and will order a couple more mentioned upthread.

On a much more positive note, I took ds to soft play yesterday afternoon to meet a friend and her ds of the same age. For the first time he made a friend while he was there, it made my heart soar. It only really happened because she doggedly pursued him for quite a while - it was really quiet but there were a few other girls there - but then they spent ages playing together, copying each other and seeking each other out. He didn’t talk much to her and certainly not in an age appropriate way but she didn’t seem to mind. At one point I heard her ask his name and he told her though didn’t ask hers. He called her ‘girl in pink dress’. When she left he said goodbye and gave her a high five and went to the door with me to watch her go. This is a massive step for him, I’m so pleased. He wasn’t really interested in playing with my friend’s son much though.

EHC question.

With the approval to assess we’ve all been sent new forms to complete with additional information. What did those of you who have got this far do? I think it’s just if there’s any new information rather than re-doing everything?

Ds has matured since the Easter break and is much improved at nursery this term - joining in more, less negative behaviour etc. They have been giving him much more 1:1 support as they have received SENIFF funding for him and this has helped too, I think. They have hopefully found someone to work with him for the rest of the term, subject to references. Should we stress that he’s making progress with 1:1 or will they use this not to provide anything? As illogical as that sounds. Obviously, there’s still a massive gap between him and his peers. I just don’t want to do the wrong thing.

Open that is a lovely story re the soft play. You must have felt v proud.

I wasn't asked to update the 'My Story' I had written for my son once they started the assessment and it was 5 months old then (as we had refusal and Tribunal in between). When I saw the draft EHCP changed some factual inaccuracies e.g. that he was wearing insoles. There were other things based on other people's reports that weren't true e.g. that he didn't know his colours but I left that alone as although I know that he does know them, if he can't demonstrate that to other people it's still a problem.

I think it is probably worth mentioning that he now has additional 1:1 support which has enabled him to participate more in nursery activities as that reiterates that more support is needed. Good luck

Glad the EHCP is good *dimples!

Sorry about the parenting course open. I was wondering if they might offer us any support if DD is diagnosed and thought a parenting course was most likely ut that doesn't seem very helpful. You have to give these things a try but it's so crushing if they don't tell you anything new.

Amazing story re the soft play though! It just goes to show, see people just click together. That's just chemistry and can be true for our DC too!!! Amazing how well he did when he was really motivated to do it. Brilliant achievement!

Especially in a soft play which I tend to find pretty overwhelming as an adult!!

Haha open very true! Great about the soft play!!

Thanks for the advice dimples and thanks for the kind comments everyone. I could have kissed that little girl at soft play. I will never forget her.

Light I shouldn’t be too judgemental of the course. I’m sure I will learn something. The next two sessions are run by a SALT, the same one I spoke to when I took my son to a drop in clinic last year. Later sessions cover visuals, play, teaching new skills and behaviour. If we get any useful tips should I post them here?

We watched a couple of YouTube videos they suggested last night. Amazing Things Happen and A is for Autism. They were interesting, I find these sorts of things incredibly emotive because they highlight, simultaneously, all my hopes and fears for ds. We then watched Temple Grandin’s TED talk. She’s such a fascinating person. Dh is reading her book about the autistic brain.

Pleased to hear that you EHCP draft is in good shape dimples. At least some LAs know what they're doing!

open we're due an OT assessment and I'm expecting it to go like yours. Sensory is our biggest need followed by fine motor. I'm expecting to have to pay for private sensory therapy but it is frustrating that the NHS seems to have cut back on this when I'm sure it makes a huge difference. Not sure where to start with therapists but tracking someone down is on my list.

open I agree with dimples about the EHCP. One of the big barriers to getting provision is that they want evidence that something works before they fund it. Definitely make sure you attribute progress to the 1:1. Such a sweet story about the soft play. Your heart must have completely melted.

Survived DD's 4th birthday party, yes!!! I think she had a good time. Nightmare getting her to stay in bed the night before or after, she was so overexcited. She's still asleep now!! I should get her up or tonight will be as bad but I'm enjoying the lie in toooo much....

Thanks for the EHCP advice. I need to co-ordinate with nursery and a couple of other professionals who can input.

LightTripper I’m glad your dd’s party went well. Hopefully she’ll settle down over the next day or so.

Sue I hope your OT appointment goes better than you expect. Our biggest issues are the same I think, though our private OT thinks he has reduced core stability and lax hip ligaments too. She’s going to see him at nursery tomorrow morning so I’m looking forward to getting an update from her.

Also, he can’t pedal yet so some sort of processing issue?

Sorry, I meant motor planning. This terminology is all new to me!

I know so much new vocab. It feels like I've had to become an expert in law, biology and education just to keep things on track.

It sounds like you're really on the case with OT open DS's gross motor skills are ok and he can ride a bike if you don't count his dodgy steering but his fine motor skills are weak. If the assessment works on this stuff with nursery/school we can focus on the sensory stuff privately as I think they are slightly different areas of OT. Here's hoping we'll both get things sorted soon.