Wait after ADOS till we find out….

[Lmgb1981]

Hi all,

my dd has her ados last week, has anyone been in the room with their kids while it’s been done? I’ve no idea how it went, she is very behind in school and socially she would rather play with younger kids than peers her own age (she’s 6) very in your face and not understanding personal

I know no one will know but just wanted to rack your brains to see what you think.

first was the puzzle pieces on the board she didn’t ask for more pieces the salt offered her more each time she ran out but was able to make the puzzle pretty much to the last bit the Salt helped her with it.

then they moved on to some little wooden dolls a fire engine a piece of string that the salt told her was a hose and some pieces of furniture, she enjoyed this and interacted with the game the salt said the dad was tired and pretended the tv was on and he wanted it to be quiet dd kept pretending to hide the tv up then she said the dog was babysitting the baby. She lined up some of the furniture too.

next was a book about a gorilla who took the zoo keepers key and let all the animals out (I think) the salt would say what was happening and waiting on dd to elaborate but all she was saying was he has a key literally pointed out what the picture showed etc

she showed her a picture of a beach scene and asked her what she saw, dd said some people and an aeroplane salt asked her has she ever been on an aeroplane dd said yes, salt asked her where she went, dd told her where, salt asked her what did she do on holiday dd said went in the pool and checked out my room (we were in Florida she went to Disney universal etc) but that’s all the information she wanted to share. Then salt said she’s going on an aeroplane next month, dd just looked at her so she said it again dd still didn’t respond so she said it again and dd said no your not and laughed.

then they done the dolls birthday party dd really enjoyed this and engaged really well but this is something she does nearly everyday with her dolls at home, she didn’t react when salt pretended to burn her hand and never blew out the candles didn’t join in singing happy birthday but did use the napkin to clean up the spilled juice and put baby to bed on a chair and covered her with a blanket.

she done the brush your teeth and she put the toothpaste on the toothbrush and says now you brush, salt pretended to brush her hair and said is this right dd said no and showed properly. Then salt pretended she had a mouthful of water and actioned she needed a cup did pretended to hand her a cup.

there was a blanket on the floor and salt used her eyes to point at it, dd didn’t understand this and eventually salt pointed at it and told her to look underneath she looked under and there was a remote control car dd picked it up and looked under it for the switch salt asked her was it broken and did said I think so, she put it on the floor and pulled it a bit by the aerial salt told her to come back to the table and she covered the car back up before she went back over.

bubbles was next she jumped up and down and said l love bubbles she wanted the bubbles but wouldn’t ask and just went and put her hands on the bubble tub and jumped and down. She moved on to the rocket toy she was shooting the rocket at me and salt.

She then took out some pop up toys a jack in the box and some blocks and other bits, she pressed all the buttons on the pop up toy, she wound up the jack in the box but I don’t know whether he actually popped up or not. Salt prompted her to try stack the blocks and dd started then realised there was some numbers on them and tried to do them in numerical order.

she initially has eye contact when answered you but then will look away.

my instinct tells me she is autistic so if they come back and say no I actually don’t know what we will do, she is struggling massively her teacher feels the same as me but I feel she interacted really well during the assessment.

before we left I was given a Vineland ti fill in, I’d already done an adi-r and given forms filled in by myself and her teacher. So I’ve posted the Vineland back to her and hoping it’s not too long till I hear back as my brain is fried.

any words of wisdom and if you’ve read to here thank you so much x

@Namechange65475 I am glad you have a diagnosis now. at the school saying there’s no issues.

Thank you. In addition to everything else, I think it will give me the confidence to be more pushy with the school.

There are a lot of high needs in the school so I can maybe see how children slip under the radar when compared to the ones who are non-verbal and/or have very outwardly-facing behaviours. And their report was done six months ago; I think some of her behaviours have been a bit more obvious to her teacher since then as she has become more comfortable with her (DD told me she tried to lick her teacher's lanyard yesterday as she was marking her work; she said she didn't know why she did it).

But we've been dealing with intermittent school-refusal for the past 18 months, they're aware of her massive sensory issues with clothes and her anxiety around toileting. On a day a couple of weeks ago when we'd struggled to get her in, even one of the office staff referred to her son, by saying he also had SEN, for goodness sake. What does it say when the office staff can pick up on SEN, but the SENCO can't?!

I feel pretty gaslit by them tbh, as I have been really doubting myself and going crazy by over-analysing everything.

Oh and also, because of the school's report, they had originally refused to assess (was a private provider, via RTC) - despite the fact that she had been seen by an NHS paediatrician and accepted on the NHS waiting list.

@Namechange65475 does DD have an EHCP?

@Headfirstintothewild No, but I think I will be applying for an assessment.

As above, despite the school refusal (we are frequently late and although sometimes she is okay going in, other times she displays distressed behaviour), there is no consistent transition process into school (we do go through the office, even on days she is on time and okay about going in, but that is only because she requested we do that one day and now it has become a routine, nothing the school suggested).

I arranged a private OT sensory assessment which concluded that she had "significant sensory modulation differences" and apart from putting a band on her chair, none of the other recommendations have been implemented.

She has gone down from greater depth to expected in reading and nothing has been looked into as to why.

She struggles a bit with handwriting (large and messy for her age, awkward grip, complains her hand hurts). I've given her a pencil grip, which she says helps (and the OT subsequently approved), but again, the school didn't pick up on this and have done nothing else with her apart from a very short small group intervention in year 2, which doesn't seem to have really helped. (She's not the worst in the class for handwriting skills so I think the school just shrug their shoulders a bit).

I did feel as though I was going crazy a bit as due to the lack of intervention, the school has made me feel as though it's all in my head!

@Namechange65475 definitely request an EHCNA.

@Headfirstintothewild I assume that it's best to wait for the diagnostic report before applying for the EHCNA? (Said the report would be 4-6 weeks).

I had been thinking about getting a private educational psychologist assessment; should we wait?

Also, I think DD would benefit from OT, play therapy and tutoring: should we start looking into (some or all) privately now?

Thank you 🙂

@Namechange65475

I wouldn’t delay requesting an EHCNA. The legal threshold is relatively low (has or may have SEN, and may need SEN provision to be made via an EHCP) and based on needs, not diagnosis.

If you request an EHCNA and the LA agrees to assess, an EP report will be part of the needs assessment. SALT, OT and clinical psychologist assessments can too.

Personally, unless money is no object, I wouldn’t seek an independent EP assessment now before applying for an EHCNA. Anyone good will have a waiting list and you don’t want to delay applying for an EHCNA. Also, if you apply for an EHCP and have to appeal at a later date, as many do, by the time you get to a hearing, any report now may well be considered out of date. And, if the LA e.g. agree to assess but not issue you may decide instead you desperately need to target your money at e.g. independent OT and SALT reports and the LA EP report will do (not brilliant but satisfactory compared to the need to get independent SALT and OT).

Whether you decide to look at private therapy sessions and tutoring now is up to you. But, if the choice is between paying for therapy sessions &/or tuition now or being able to afford independent assessments should you need to appeal, potentially more than once, during the EHCP process, then I would always choose the latter. To explain, independent assessments to secure support via an EHCP will in the longer term provide far more support for DD than the majority of parents would be able to fund themselves.

@Headfirstintothewild Thank you, this is all really helpful.

I have a short meeting with the SENCO and class teacher next week; the SENCO is quite patronising and 'takes charge' of the conversation, so I find it hard to be assertive with her.

I also think she doubted any ND and I've felt quite fobbed off by her. She also seems okay at coming up with practical solutions to immediate problems, but fails to look at the big picture. (Ie uniform accommodations, but fails to see that the sensory issues are worse because of school anxiety).

DD also finds it hard to articulate why she doesn't want to go to school.

On response to telling the SENCO about DD's diagnosis, she just said that she was looking forward to seeing the report and the recommendations it might provide.

What sort of things do you think it would be good to suggest they implement in the meantime?

• Are schools able to provide a daily timetable in advance so DD knows exactly what's happening that day before she goes in? (They do have a class visual timetable in the room)

• A more consistent transition into school? Not sure what this would look like or whether it would help...

• Just general understanding? DD had to ask her teacher last week for her spare trousers as hers had got wet at lunch. DD asked her teacher where she should change. Instead of just telling her, her teacher asked her where she thought she should get changed. DD knew the answer, but I think wanted to be certain.

Don’t let the school fob you off requesting an EHCNA. Some incorrectly say it isn’t necessary/DC won’t get an EHCP.

The school should be able to provide a daily timetable in advance. There might occasionally need to be changes but they could notify you/DD as soon as they are aware. The school and staff should already be aware of DD’s needs, but reiterating that to staff and updating them on the diagnosis should happen.

A better transition into school could be looked at too. For example, would it help DD if she arrived 5/10 mins early or late via a quieter entrance? Do they have someone who could meet her each morning? Do they have somewhere where they could provide a softer start in the morning?